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Posted By : Leenie - 12/31/2006 6:24 AM

I had my PFO (Patent Foraman Ovale) closure on Friday (Dec 15th 2006). A PFO is an opening in the heart, which doesn't close completely after birth. The opening, 0.5cm, was allowing unfiltered blood and clots to travel to my eyes and brain, resulting in serious symptoms of haemorrhaging and mini-strokes for many of my 26 years. The PFO was finally identified in July 2006 and I was whisked on to the surgical waiting list to have it corrected. I was also given aspirin and plavax to take daily to help thin the blood, and all of my symptoms of paralysis, slurred speech, numbness, tingling, weakness, headaches and blurred vision vanished. Hallelujah!  

The surgical team attempted to do the procedure on the 8th but an unexpected allergic reaction to the antibiotic Vancomycin caused me to break out in a rash all over my neck. This apparently is called "red neck syndrome" and is a known side effect of this antibiotic. Hives developed in an itchy, red welt mess all over my back and my tongue and lips swelled like the results of a bad cosmetic lip enhancement. I threw myself on to an offered stretcher and promptly passed out. I was quickly given phenergan and something else equally doze-worthy plus oxygen, resulting in a long, drug induced sleep. I can't do anything simply - it isn't my style.

The doctor kept me in, much to my annoyance, for the whole weekend, releasing me on the Monday with strict orders to return at the end of the week. Frustration that the surgery wasn't over consumed me on the Saturday but I soon reminded myself that everything happens for a reason and maybe my body wasn't ready to undergo the procedure on the 8th. Or maybe something more unfortunate than a simple anaphylactic reaction would have happened and I decided I should be thankful for the reprieve. 

The 15th arrived in a rush and I found myself back in cardiac investigations of the Prince Charles Hospital. The staff remembered me, courtesy of my troublemaking the week before, and I was given expensive, non-allergenic antibiotics with no problems. Trying to get a decent vein in my arm to insert a canular is a challenge but the doctor didn't do too badly - it only took him two attempts instead of the usual three.

The surgeon came to get me and I was forced to walk as quickly as my little legs could carry me, dressed in my massively oversized Jacaranda purple gown, down the hallway. He gripped the IV stand in his heavily insured hands, and threatened to accidently pull the drip out of my arm if I didn't practically run to keep up. He deposited me in the theatre and disappeared. The theatre nurses indicated that I was to clamber up on to the surgical table, where I lay, nervous anticipation engulfing me. I swallowed the lump that threatened to form in my throat. I had refused the sleeping tablet, anticipating a decent sedative once in the theatre. Big mistake! Note to self: accept all drugs offered when expected to stay awake during an op!

Oh my Goodness, what a horrid experience.

My groin, which had been previously Brazilianed but an enthusiastic nursing student, and legs, were washed down with ice cold, beetroot coloured alcohol (and not the good type). A surgical cloth was placed over my body and the surgeon's assistant arrived to cut open my legs. Local anaesthetic injected into both sides of my groin didn't do much to hide the pulling, pushing, pressure of sutures and insertions of tubes and wires. The drug they had put into the IV to help me relax didn't arrive until half way through the procedure due to a blocked canular. After much ooohing, aaaaahing, ouching and tears from me, the unenthusiastic patient, they finally realised something wasn't quite right. They flushed the canular, reattached the drip line and Hello! there we go. The good juice.

A mesh cocktail umbrella styled device was threaded up through the groin to the chest. It was pushed through the hole and popped open, then pulled back through and popped open on the other side, producing a shield to prevent fluids from travelling through. Pretty amazing! An xray and an echocardiogram was performed to ensure that it is in the right position. Two to three weeks post-op endothelial cells grow over the device, sealing it.

Recovery. The lovely nurse who looked after me applied lots of pressure to the groins to help stop the bleeding, and there was quite a lot of that happening! She alternated between using hand pressure, pressure bandages and a device that was strapped around my waist. I had to lie flat without moving my legs for five hours. That was hard on my back and knees but the time didn't go too slowly. At 9pm i was allowed out of bed, and was sent back up to the ward. Overall, the worst part was the procedure itself.

I wasn't allowed to drive for a few days and I can't do much exercise for another month. I usually go to the gym once a fortnight and to hydrotherapy weekly so that is out until after my next cardiology appointment. Routine dental care is out for six months (what an excellent excuse to avoid the dentist!!). I also experienced bruising, tenderness, bleeding and pea sized lumps around the incision areas, fluttering in my chest for the first 24 hours, shortness of breath for the first three or four days, and the feeling that something was "stuck" in my chest. Imagine having a big bit of phlegm in your chest that you want to cough up. Now replace phelgm with chicken bone! Yuck. Once my brain realised that, "oh! that is supposed to be there!" the feeling went away. A week on, I still feel a little tired, extremely tender and bruised in my groin area still and some mild palpatations but I'm sure all that will improve soon. I go to the cardiologist for a check up and another echo mid-January, 3mths post op, 6 mths post op and then annually for a little while.

Update: It is three weeks later and everything is going well. I had a check up on Friday and the device is looking stable. The lump in the right groin was ultrasounded but it is fine and should go away eventually by itself. I went to a music festival yesterday and today and felt the benefits for the first time - more energy and no puffing... even after walking quickly up a hill. I'm feeling more confident in myself too!


Posted By : patched1129 - 12/3/2007 3:20 PM
I had my PFO closed Thursday, November 29, 2007. I am having terrible chest pain. The "chicken bone" you mention sums it up well. I had a full stroke 9/21/06. Two TIA's prior to that (which I just learned I had from the MRI read by a better doctor). And, two TIA's since the stroke while on 325mg of aspirin. I am now on plavix and aspirin. My doctor thinks the pain is from the TEE and the esophogus might have been damaged. I had similar pain in 06 when they did the TEE but not this bad. Any thoughts on this one? What did you do to relieve the pain? I am taking 3 Advil every 6 hours.

Posted By : tafish - 12/19/2007 4:30 PM
I also had my PFO closed a couple of weeks ago because of stroke and history of migraines. I have this moving chest pain (chicken bone) that you both have described. Did your physicians ever find out the cause of this problem? Could it be pulmonary hypertension? Please let me know because I am having no help from my physicians.

Thanks!

Posted By : patched1129 - 12/19/2007 4:57 PM
Did you have the TEE done with your surgery?
 
The feeling finally went away.  The doctor felt strongly that it was simply damage to the esophagus from the TEE.  I felt it was my heart getting used to the patch.  I kept imagining this implant pinching the walls of my heart.  It was the worst.  But, I woke up 6 days ago and it was gone.  I haven't had it since.  I did over-do some lifting on Monday and got a similar pain in my chest.  At this point I am a little confused as to what causes the pain or what it is.  This forum was the only thing that kept me from losing my mind.
 
Advil did help, some but not much.
 
I still can't sleep on my side, though.  Since my stroke in September of 06, I have pain in my chest if I try to sleep on my side.  It is like pressure.  I have no idea what causes it.  The doctor kind of dismissed it.   Also, I will wake up with that terrible throbbing in my right temple if I turn to my side during the night.  Anyone have that?  I have always slept on my stomach or sides.  Only on my back during pregnancies.  This has become very irritating.  I haven't had any migraines since the surgery, though.  A couple of headaches, but again, Advil helped.
 
How are you doing other than the pain in the chest?

Posted By : snugglesrn - 12/20/2007 5:23 PM
Have any of you had any migraines since the closure? Just curious, I have a small PFO that they want me to get close to take down my stroke risk and help with my migraines and I haven't done it because of the expense (not the greatest insurance). I am not sure if I do want to get it done now after reading the post.

Posted By : patched1129 - 12/20/2007 6:04 PM
To be perfectly honest, I have never really felt this good.  I would do it again in a heartbeat!
 
My children and husband have noticed the biggest difference.  I recommend it for the migraines, especially.
 
The way I look at it, I had "dirty blood" going from the right to the left and circulating through my body and going to the brain. 
I think we do need the lungs to clean the blood and it's not good to bypass that.
 
Have you had any MRI's.  When I had my stroke, it showed two older mini-strokes or TIA's that I didn't know I had.  Very interesting stuff.
 
I can't handle taking medication for the migraines and most of those cause the blood to constrict from what I understand which is bad if you have the PFO.
 
Let me know how you are.
 
By the way, I haven't had a migraine since.  I have taken Advil a few times for minor headache but it went away within an hour.  I was waiting for that pain that would make me want to hurt someone and it never came.  Yippee!

Posted By : snugglesrn - 12/21/2007 3:39 PM
That's great to hear. I had a MRI, MRA and CAT Scan done. It was all done on my head though. When my symptoms first started to appear they though the third ventricle of my brain was enlarged. Then they thought it was seizures and now I am diagnosed with Acephalic migraines with Aura, Migraine with Aura, Cluster migraines and ice pick migraines. During a neurolgist exam they heard a murmur in my heart and sent me to a cardiologist who found the PFO. Now they recommend having it because of the high risk for a stroke (my half brother has the same condition as me and was treated for a TIA, which make me higher risk for a stroke) closed but due to insurance (not the greatest insurance) and lack of money I am postponing it.
My migraines have gone down to just annoyances (no auras) since I stopped using the toothpaste that I was using. I also stopped consuming all artifial sweetners. I have a migraine (not bad though) about 4 times a month. I think I will reconsider the surgery.
Thanks for all the information.

Posted By : tafish - 12/23/2007 11:10 PM
Approximately two weeks following my PFO closure, I continue to have really terrible chest pain (kinda like something is stuck in your chest or like when you eat something cold really fast and you have really bad chest pain-minus the cold feeling). Thanks for the information from Member pateched1129-I am sure that I probably did have a TEE during surgery, but my physician just states that there is nothing wrong with my heart. I have come across a great website

http://www.sorensenmd.com/nviResearch.php they have alot of patient information of what to expect following a PFO closure. I wish my physician had provided this information to me prior to my PFO surgery. The website indicated that mild chest pain or pressure was normal but, severe chest pains was to be of concern. They also mentioned that it was common to experience headaches following surgery. I found this information to be very helpful. The only information I was not able to locate was how long this chest pain seem to last -because it is really driving me crazy? Can anyone provide me there experience to how long it lasted because it has been approximately two weeks for me and its is still continuing. I also seem to have a high heart rate? Any information would be greatly appreciated.

Posted By : bobby181207 - 1/7/2008 1:25 PM
Prior to my PFO closure on Dec 18 2007 I had a bonafide stroke (leading to partial vision loss) and, over 9 years earlier, a TIA which briefly left me speechless.
The operation went off smoothly and without discomfort (I was made to sleep through all of it), although the ultrasonic examination the day after revealed that the PFO, originally 9x4 mm in size, had not been closed completely. The surgeon suggested that the remainder would close by itself within the coming months and slated a follow-up examination in 4 weeks time.
After returning home the next day I (and my wife) was relieved to discover that the damage to the groin area was minimal, and within three days I was walking normally. On the doctor's advice, I took up my normal running schedule, 10 km 3-4 times weekly, 10 days after the operation.
Like others here I continue to experience chest pain, like the chicken bone described here, but it is by no means incessant or excrutiating, just mildly uncomfortable and worrisome at times. Whereas I never have had migraines or even headaches to speak of (except after too much inferior wine), I frequently experience tension in the neck and real headaches - most every day. On the other hand, I also had intermittent chest pain before the PFO closure, which had apparently been caused by back tension and was successfully treated with massage. So I am now wondering of course whether the present sensation might be some sort of psychosomatic reaction. (Just reading this forum has caused my chest to act up again!)
Who has any thoughts on this?

Posted By : patched1129 - 1/7/2008 1:47 PM

Go to the section under Heart and Cardiovascular Disease > PFO closure.  There are many of us that are going through the same things.  We have all felt like we were going crazy at some point.  It is very helpful and much more detailed on symptoms. 

I actually kept some of the things to myself because I felt like it had to be in my head but when I posted my symptoms other people were experiencing the same things.  Thank goodness I listened to my body and them.  They put me on beta-blockers last week.  What a difference in how I am feeling, today!

As I stated in the other section, I am not a good sick person.  But these things happening are very real.  Do you have the heart racing problems or trouble sleeping on your side?  Check into the other section as I think it will help you as it has many of us.

 

 

 

 


Posted By : Wildfire27 - 1/10/2008 8:23 PM

Hi all,

I'm 27 and had a stroke last year. Wow how that changes your life! I felt like the only one on the planet to have a stroke so young. After thorough testing, they found nothing. They blamed it on birthcontrol thickening my blood and causing a clot. I went to  a leading hospital and they found the PFO. I have a doctor's apt tomorrow morning to plan what surgery and when. I'm terrified. I've seen so many pros and cons but of course I can't get over the cons. Any advise????

Please confused

 

Wildfire27


Posted By : patched1129 - 1/10/2008 8:32 PM
Welcome Wildfire27!
 
Check out the Heart and Cardiovascular Disease > PFO closure section of this forum.  I am seriously feeling better than ever.  Yes, there are cons but on blood thinners, I had two more mini-strokes after my stroke.  Also, the migraines.  The funny thing is that I must have always had headaches and until now I never realized it.  My husband can't believe the difference in me as well as my daughter.  As with anything, healing is a process.  The unknowing part of not knowing when I would have another stroke was just too much for me.  I would do this again in a heartbeat!  Read more and hopefully you will feel more comfortable.  Also, remember, we are the ones that have had issues.  The people that haven't had any problems have nothing to write about.  They are out having a good time!!!
 
Good luck.

Post Edited (patched1129) : 1/10/2008 7:39:56 PM (GMT-7)


Posted By : Wildfire27 - 1/10/2008 8:37 PM
Thanks Patched1129. I really appreciate it. I hope for your continued healing and hope to post good news tomorrow.

Thanks again,
Wildfire27

Posted By : upanatom - 1/15/2008 4:39 PM
I had my PFO closed on 12/12. First week and half went fine then I went into AFIB. That really sucked. I've had great difficulty getting my doctors to answer my phone calls (2 day reply). After that I've been having PVCs and strong heartbeats sometimes. 5 weeks after things are getting better. I'm on coumadin and plavix and a beta blocker.

I had an echo U/S done and things were fine.

I would say that taking more time to heal than you might think is the right approach. I was very active prior to the closure and while I'd like to get back in the gym, I'd also like to have my PFO close up and heal correctly.

I've been told its ok to start "light" aerobics but no weight lifting >25lbs for 6 months. I think I'll give things a bit more time.

Posted By : patched1129 - 1/15/2008 5:06 PM

Welcome, upanatom!

I am still freaked about getting on the treadmill!  Welcome to our PFO closure club.  Check out other information under Heart section.

I am feeling better on the beta blocker.  Still have the heart racing but seems under control.  I don't feel like I am having a heart attack, now.  They had to cut my beta blocker in half because of the stomach pains the whole dose caused.  It worked better at the regular dose but my stomach couldn't take it.

I go back in 6 weeks for TEE to check my progress.  I hope to post excellent news at that time.

 

 


Posted By : upanatom - 1/16/2008 2:48 PM
Thanks for the reply. I was hoping to find a PFO "Support Group" online. I know the docs like to sell the procedure as no big deal, but clearly the heart responds in ways that are often not clear.

When you're on the treadmill, what are the details of your workout? 20 minutes at 130bpm, etc.? I'm still trying to decide the best way to start up training again.

I'm on Metoprolol as beta with no stomach issues.

Good luck on the TEE.

Posted By : patched1129 - 1/16/2008 3:03 PM

I just bought a brand new treadmill.  It is still sitting there waiting for me.  I am literally too freaked to use it.  I stopped working out at the gym when I got so sick with the migraines and learned I had the additional two TIA's while on the blood thinners.  Thus, having to have the PFO patched.

I will let you know when I get the courage to get on it.

I put my husband on the South Beach Diet because his cardiologist recommended it for him (he has cardiomyopathy).  I am only 104 pounds so I am sneaking snacks when he is not around to be tempted.  We are quite the pair.  He is 44 and I am 38.  Both heart patients!!!  The heart hospital is very familiar with us.  He had his angiogram the week after my stroke and first TEE in 2006.  When I had my surgery in November, they remembered us well.

I am sure I will get moving soon.  I feel like I am doing aerobics when my heart starts going wild.  I figure it has to be burning some major calories with as fast as it goes.  I will update after the TEE first week of March.  My best to all of you.

 


Posted By : upanatom - 1/17/2008 7:30 PM
Just as some background. The pro football player Tedy Bruschi had a major stroke in Feb 2005. It was caused by a PFO. He had it fixed in March 2005 and started playing football again in Nov 2005. He was having biweekly TEE's during practice to make sure everything was ok. He had written a book about his experiences if you're interested.

So keep that in mind that things should heal in the long term and you'll be good to go.

Posted By : Neurogurl - 1/17/2008 7:45 PM
Hi Wildfire...I am the same age as you and I also have a PFO. The doctors told me it was very small and not worth closing. But, I have so many symptoms. Could you tell me if your PFO is small, medium, or large?
 
Also, for everyone else...could you all share with me your symptoms prior to your PFO closure, the size of the hole (whether it was small or large), and if your symptoms were a daily encounter. Thank you all.

Posted By : upanatom - 1/17/2008 10:59 PM
I had a TIA that led to discovery of the PFO. It was "medium" size according to my doctor.

Your doctor has probably told you that ~20% of the entire population has PFO's. 2nd and 3rd opinions from doctors are always good.

Posted By : Wildfire27 - 1/19/2008 10:42 AM
Hi Neurogurl,
I deffinately recomend getting a second opinion. I went to 3 doctors to find out what was really going on. The doctor says mine is moderate (aka medium size) Apparently they don't close them unless you've got reasons why the medicine rehabilitation won't work with you. Yes I have symptons daily. I wake up with a headache most of the time. Anytime I'm exercising, I get a horrible headache, and I yawn the whole time. What symptoms are you dealing with?
 
Wildfire

Posted By : Neurogurl - 1/22/2008 5:48 PM
Hi Wildfire..I have really wierd symptoms. And its been 2 years now with these symptoms...
I get headaches, blurred vision, sparkly vision, trailing vision, lightheaded/dizzy. They were running tests to make sure it wasnt my heart and thats when they found I have a "small" PFO. about 6 bubbles passed when they did the bubble study. Is it definite that I will have a stroke??? Not only that, I have factor v leiden which is a genetic blood clotting disorder....

Posted By : Wildfire27 - 1/24/2008 1:01 PM

Neurogurl,

I wouldn't say you're for sure going to have a stroke but I would STRONGLY recommend a second opinion from a well known Heart Institute (Johns Hopkings, St. Lukes, Cleveland Clinic) I would definately take a full aspirin a day and seek another opinion. I had my PFO closure done yesterday and am very pleased.

Let me know if you need any thing else.

Good luck. And keep in mind. Take control when it comes to your health. Don't let one doctor tell you anything definate. Make sure you get more options. It took a stroke and 3 doctors for me to find the right one.

 

Keep me informed

Wildfire


Posted By : upanatom - 1/27/2008 12:57 AM
Question for Wildfire27. Congratulations on a successful closure. What has your doctor told you about recover? Can you start aerobic exercise in 6 weeks, 3 months, etc?

I'm 6.5 weeks post closure. I'm still taking it easy.

Posted By : Wildfire27 - 1/27/2008 9:21 AM

Upanatam,

My doctor told me not to lift more than 10 lbs for 4-7 days, than no more than 30 lbs for 1 month. He said after my sutures heal 1-2 weeks I can start light to moderate cardio or when I feel up to it. But that's just what my doctor said. I hope all is well with you. I have a question for you. Did you have any headaches post surgery???

 

Wildfire27


Posted By : upanatom - 1/27/2008 11:17 AM
No headaches. I began to feel some "pressure" or "stiffness" in my chest after the first week, which my doc said is normal as the heart stretches and adapts to its new "roommate". At 1.5 weeks I went into a-fib and ended up back in the hospital however.

My internet research mentioned a study with ~5% of PFO closures having some type of heart beat irregularity as part of the healing. I'm on a beta blocker now so that makes doing aerobics confusing as they suppress the heartbeat.

Posted By : Wildfire27 - 1/28/2008 12:32 PM

Upanatum,

Thanks for the info. I'm feeling great. They've got me on blood thinners for 6 months. I don't have any discomfort as of yet. Hopefully your a fib is done with and you're back on the road to recovery. Thanks again

 

Wildfire27


Posted By : jaimwa - 2/24/2008 7:21 AM
Hey Guys

I totally new here - 1st post!

I had a mild stroke in October 07 causing me an INO which resolved fully after about a month.

Just had a PFO closure done there on Thursday. No Ill effects so far. Feel great. On Plavix for 1 month and Aspirin 75mg for the future.

It was carried out in London by the foremost expert in the UK - he did 4 the morning I got mine done! He used the atriasept device http://www.cardiainc.com/products/products-pfo2.html (WFS) for me which I was pleased about as it is more bio-absorbable than the amplatzer as it has way less metal in it (I read up a lot on devices before I met the surgeon and really quizzed him on different ones). He said it went extremely well and he got a really tight and flush closure.

I don't feel like there is anything inside me at all. In fact I feel no different at all, apart from relief that it's over and peace of mind that my stroke occurrence is a lot less likely. Oh I must say my throat is sore - it's black and blue from the TEE - but getting better by the day.

I am a gym freak and play a lot of sport - well I did before the stroke and can't wait to get back to it. The advice I received advice was to not lift anything for the first week or so and not to play contact sports for 4 weeks. So fingers crossed I will be back at it in a month! Does this seem too short a time to anyone?

I have a follow up scan in 3 months.

Thanks in advance for any replies!

Posted By : upanatom - 2/25/2008 4:22 PM
Good to hear you fell well about the PFO closure. A black and blue throat sounds a bit rough however. The TEE shouldn't cause more than a minor irritation. I've had two done and that's all I've ever felt. Maybe they need to knock you out more next time?

Take it easy getting back into activity. This is your heart, not your elbow. Its in there beating all the time.

It takes about 6 weeks to heal to an 85% level. This is true in surgeries in general, not just PFO closures. If you're mathematically inclined plot 1-exp(-x) to get an idea.

That's the beauty of the body's healing process. It really does go pretty quickly at first but then the last 10-15% take a long time.


|

Posted By : PFOgirl24 - 4/29/2008 1:59 PM
I had a PFO closure on Feb 8th 2007 & i've been having heart pains that feel like something is stabbing my heart ever since. They come on fast & stop after i take a few deep breaths. I've asked my surgeon about the pains & he cannot find anything wrong. Does anyone have any idea what this is?

Posted By : upanatom - 4/30/2008 9:26 AM
No idea at all. 15 months after closure and you still have the problem? Have you talked to the doc about allergies/reactions to the type of material used in the closure device????

Posted By : PFOgirl24 - 4/30/2008 10:21 AM
I actually do have a metal allergy, but he used an CardioSeal Septal occular implant that is supposed to use less metal, therefore minimizing the risk of a reaction. I never thought about a reaction. Thanks!

Posted By : upanatom - 4/30/2008 12:19 PM
Glad to help out if possible. Get better and be well!

Posted By : MigrainesForLife - 5/5/2008 1:27 PM
Hi everyone! I am a 26 yr old male and was diagnosed with a large (At rest: 3/5 rating; Bearing down: 5+/5 rating) PFO a couple of weeks ago. That means that an awful lot of bubbles get to my brain most of the time. I am scheduled to have the closure surgery on May 15, 2008 and am real freaked out about it, but all of your posts have helped me some, so thanks!

A little background on me, I have had headaches/migraines all my life. I can't really remember a time that I didn't. I get dizzy/light-headed frequently and my vision changes frequently. I really hope this procedure helps.

When the diagnosis happened, the doctor immediately put me on 325mg asprin every day. I have stomach (IBS) problems and so this hasn't been easy, but I have held with it. Is there anything that anyone would suggest to help me prepare for the procedure?

Thanks!

Post Edited (MigrainesForLife) : 5/5/2008 1:54:12 PM (GMT-6)


Posted By : omya - 5/22/2008 3:21 AM
Hi there
thank you for having such an informative post,and wishing you all good health and speedy recovery.
My husband had a TIA October 06, was diagnosed with PFO (they say it's not big!)..they're suggesting transcatheter closure..
I know that nobody knows the future, but in a brief comment, on the long run, do you think it's better to have it done regarding the side effects of the presence of the  device in the heart.
Thank you for your replies and help, the procedure is planned for 5th of June, so please reply as soon as you can.
thanks

Posted By : s2k - 11/10/2008 2:44 PM
Hi, in May 2008 I had a large PFO closure, 22mm....The PFO was discovered because I am a scuba diver and noticed that I was getting some chest pain and blue lips, also very clumsy. When I had the operation I could not believe how painful it was, it took about a month before I felt okay again....Then 2 months after I started to get chest pains again, sharp pain. The doctor put me on beta blockers as well as the plavex and aspirin I am already on. I had my 1st eco bubble test in July and was told the procedure had not been 100% successful; it closes at rest but not under exercise. I have just been to my second eco bubble test and same problem, still not 100% successful....I now have pains in my legs and still get some chest pains, not as bad since being on the beta blockers. I am seeing my surgeon next week to find out more and what’s next for me.....Has anyone else been through a similar experience?

Good points, no more migraines and not so clumsy....plus my complexion is much better....


KP

Posted By : s2k - 11/11/2008 12:04 PM
Had my PFO closue done in May 08, large PFO 22mm, bad news is its not fully sealed.....I have some good points, the migraines have stopped but I now have chest pains and achy legs....

S2k

Posted By : IraqMigraine - 11/17/2008 12:00 AM
I have a couple of questions.  I was in Iraq and had something like what I would imagine was a stroke.  I felt my arm go numb and my face drooped and was unresponsponsive.  I was medevaced out and diagnosed with a migraine headache.  A large PFO was found.  I am not military.  Does insurance cover this procedure.  My city is very small and has a very limited number of neurologists.  My arms keep going numb and my face keeps going numb.  I have severe headaches.  I went to the ER and was diagnosed again with a hemiplegic migraine and given Topomax which hasn't helped and I'm still having severe numbness and tingling on one side of my body and face and still the headaches.  I don't know what to do but the more I read about PFO's the more I think it might have been a stroke and the more I think it might be a series of mini-strokes.  I can't get an appointment for 5 to 6 months with a neuro but I can get an appointment with a cardiologist within the month.  What are the criteria for getting this thing closed?  I've never had a migraine in my life.  I've always been exceptionally healthy!  Does anyone have any advice?  Please help as I have nowhere else to turn. 

Posted By : greenhope - 11/28/2008 2:16 PM
Hi, IraqMigraine and welcome to the forum! I just saw your post. We have a very active thread regarding PFO's in this forum under "Heart & Cardiovascular Diseases." The thread is called "PFO Closure - open Heart or Transcatherer 3." Many of us have posted lots of useful info. on that thread and the 2 previous ones.

It sounds to me as if your situation could be potentially serious. Make the appt. with the neurologist, but go see the cardiologist first since this is the first appointment you can get. For the neurologist, let them know you think you may have had a stroke and maybe they can schedule you earlier - try and make them "feel" the seriousness of your situation. Make sure you see a cardiologist that knows how to do PFO closures - many of them don't! I made that mistake. Also, through the cardio's office you may be able to get an appt. w/the neuro sooner because he is recommendng that you see one - the cardio office staff may be able to make the appt. to the neuro for you.

Good luck to you in making your decisions and I hope you will keep us posted.

greenhope

Posted By : rf1 - 1/7/2009 9:11 AM
I had my PFO closure on 6/28/08, and after 6 mos. my bubble test still showed a opening and not much change in the amt. of bubbles that passed thru at the 1 mo bubble. What does your doctors reccomend? are you taking 81mg asprin and plavix? rf1
s2k said...
Had my PFO closue done in May 08, large PFO 22mm, bad news is its not fully sealed.....I have some good points, the migraines have stopped but I now have chest pains and achy legs....

S2k

Posted By : rf1 - 1/7/2009 9:15 AM
Hi s2k, my pfo closure 6 mos ago was not 100% succesful either! My cardiologist is consulting w/ neuro & surgent but thinks we should give it another 6 mos and reevaluate then. Has anyone had a PFO closure that took a year to seal over completley? What did your doctors say? What medicines are you on? Thanks rf1
s2k said...
Hi, in May 2008 I had a large PFO closure, 22mm....The PFO was discovered because I am a scuba diver and noticed that I was getting some chest pain and blue lips, also very clumsy. When I had the operation I could not believe how painful it was, it took about a month before I felt okay again....Then 2 months after I started to get chest pains again, sharp pain. The doctor put me on beta blockers as well as the plavex and aspirin I am already on. I had my 1st eco bubble test in July and was told the procedure had not been 100% successful; it closes at rest but not under exercise. I have just been to my second eco bubble test and same problem, still not 100% successful....I now have pains in my legs and still get some chest pains, not as bad since being on the beta blockers. I am seeing my surgeon next week to find out more and what’s next for me.....Has anyone else been through a similar experience?

Good points, no more migraines and not so clumsy....plus my complexion is much better....


KP

Posted By : lloyd0307 - 1/11/2009 5:56 PM
I was diagnosed with a PFO about a year ago,  and with migraines for about the last 30 years the doctors have decided that I have tried just about everything, so they said that they will close the PFO.  My question is about the medications that I am currently taking.  Do I continue to take them? they were meant at migraine preventative  . . . like 100 mg of Topomax.  Should I continue taking that? or work my way off of it?   How long of a recovery time is the PFO Closure Surgery? How long can I expect to be out of work? How long until 100% activity? I am anxious to regain my activity level and lose some of the weight I have gained throughout the last couple of years.

Posted By : rf1 - 1/11/2009 6:47 PM
S2k- Sorry to hear yours was not 100% succesful either. My doctors are wanting to wait a year and see. On this site others are waiting till the 1 year echo for those results as well. On this blog others have also said that their echo technition said that it can take up to 1 year to close, and to be patient. I am hoping for that, and I will pray for you too!
I don't get any leg pains other than when I had the surgery. I did get what is called an av fistula ( when the veins & arteries become intermixed by mistake when they go in) but thay often resolve on their own, as my did in about 3 mos ( I had my pfo closure june 2008). If you are having leg pain still I would discuss w/ your doctor, if you have not already, and maybe ask for an ultrasound of your legs/groin area. I don't think the surgery or the opening should cause leg pain? Good luck at your doctors visit. keep us posted , as to their thoughts.
RF1

Posted By : cattledog - 1/15/2009 12:19 AM
Hello everybody.  I am new to this forum, but am thankful there is something out there that seems like it can be of help.  I didn't think I would have a lengthy recovery, but it seems to be that way and I'm trying to find out if there is a period of time that I should consider, instead of the 2 weeks that my doctor told me were all that were needed for a complete recover so I can go back to work in construction.
I was 30 years old this last October 2008 when I had a full-on heart attack.  It was a process of elimination that revealed a PFO issue.  I ended up going to UCLA and having the procedure done by a professor at the university on December 3rd, 2008 and it's been an experience.  I feel like things got better in some regards, but then I had other types of pain after the procedure.  Though I feel like the pain isn't as bad as it was right after the procedure, it's been around 6 weeks since the procedure and I've had a couple of seconds long sharp stabbing pain periods, low aching daily, the heart feeling like it's going to pound out of my chest a couple of times, a weird feeling in the center of my chest that I can't explain except for those who have ran and after a long, fast run, you find your lungs burning...sorta like that, and overall aching if I do too much physical exertion, even yard work. 
I have a TEE on the 27th of January, 2009, and am hoping things are healing well, but must admit that I am concerned by the aching in my arm and heart area at times, that this isn't normal and something is wrong.  Perhaps it's just fear, since every little ache after my heart attack caused me to fear for my life, like "the big one" was going to happen and my wife and 5 children would be without me permanently.
I just want to carry on with my life, but it seems to be dragging on as if this PFO recovery is supposed to be long and drawn out.
Sorry to ramble, but I'm not sure what to think, what to expect, and even what to ask my doctor when I go there in less than 2 weeks.  He hasn't returned my calls or e-mails and I feel like they actually think I'm making up the pain and/or concerns.  Anything would help.  Thank you.

Posted By : cattledog - 1/15/2009 12:21 AM
Also, is there a medicine that I should be on besides aspirin? The doctor took me off plavix and metoperol after 1 months of the surgery. I also have vicodin for pain.
Anything would help. Thank you.

Posted By : rf1 - 1/15/2009 10:09 AM

cattledog- sorry to hear all that you have been through. I to had a PFO closure after multiple strokes ( at 35 years old) at the same time that left me without feeling in my arms, speechless and memory loss that has since resolved ( thank God) All that we have gone through has made us anxious with good reason, but your doctors should never not answer your calls or make you feel your not getting the answers you deserve!. My recovery was complicated and I spent 5 days in hospital, but I never had any pain around my heart. It is normal for the first few days to experience heart flutters as the device gets adjusted. My heart rate was also elevated, but resolved after a few days. Some people on this blog have been treated with a beta blocker for this? The only pain I had was in my legs from the surgery and weakness ( I had a bleed after the cath.) I can say that it took me about 2.5 mos to feel my normal self, but no pain.

I was told to not lift anything more than a gallon of milk for 8 weeks, do not do any thing that would cause you to strain alot, and light exersize such as walking only. I am taking 81 mg of asprin , plavix and a statin ( cholesterol med). Was told to take plavix x 6 mos or until the bubble test indicated the PFO was closed all others for life & asprin would be bumped up to 325mg at that time. I think you need to address these issues sooner than your appt with your cardiologist, if you are have pain and funny heart stuff or atleast tell your primary and get an ekg. I am a nurse, so I do have some clinical background, but your doctor knows you best. If you don't feel right you need to find the answers for you and your family. Good luck! Let me know how you make out.

P.S. was your PFO closed with a device? if so what type?

RF1

cattledog said...
Hello everybody.  I am new to this forum, but am thankful there is something out there that seems like it can be of help.  I didn't think I would have a lengthy recovery, but it seems to be that way and I'm trying to find out if there is a period of time that I should consider, instead of the 2 weeks that my doctor told me were all that were needed for a complete recover so I can go back to work in construction.
I was 30 years old this last October 2008 when I had a full-on heart attack.  It was a process of elimination that revealed a PFO issue.  I ended up going to UCLA and having the procedure done by a professor at the university on December 3rd, 2008 and it's been an experience.  I feel like things got better in some regards, but then I had other types of pain after the procedure.  Though I feel like the pain isn't as bad as it was right after the procedure, it's been around 6 weeks since the procedure and I've had a couple of seconds long sharp stabbing pain periods, low aching daily, the heart feeling like it's going to pound out of my chest a couple of times, a weird feeling in the center of my chest that I can't explain except for those who have ran and after a long, fast run, you find your lungs burning...sorta like that, and overall aching if I do too much physical exertion, even yard work. 
I have a TEE on the 27th of January, 2009, and am hoping things are healing well, but must admit that I am concerned by the aching in my arm and heart area at times, that this isn't normal and something is wrong.  Perhaps it's just fear, since every little ache after my heart attack caused me to fear for my life, like "the big one" was going to happen and my wife and 5 children would be without me permanently.
I just want to carry on with my life, but it seems to be dragging on as if this PFO recovery is supposed to be long and drawn out.
Sorry to ramble, but I'm not sure what to think, what to expect, and even what to ask my doctor when I go there in less than 2 weeks.  He hasn't returned my calls or e-mails and I feel like they actually think I'm making up the pain and/or concerns.  Anything would help.  Thank you.

Posted By : cattledog - 1/15/2009 4:53 PM
I'm going to my primary on Saturday, so that should help to some degree to feel heard and taken care of.  As for a device, yes, I had a Helex Septal Occluder, Catalogue Number HX1520 put in me through the groin.  I was only told to not lift anything more than a gallon of milk for 2 weeks, and I was also told I could return to construction after 2 weeks, even though I didn't and haven't; only light electrical work.  Perhaps I was allowed to do things too soon and it is hindering my recovery?
 

Posted By : rf1 - 1/16/2009 7:37 AM

Cattledog - I'm glad to hear you are going sooner. Make sure you are heard! It takes time to heal emotionally & physicaly. I could not have even have imagined going to work, especially in construction just after 2 weeks. I'm glad you listened to your body and did'nt push yourself. By the way, did your bubble study indicate that your PFO had closed completley? It has been 6 mos for me and it is still not closed all the way. Good luck Saturday.

RF1

cattledog said...
I'm going to my primary on Saturday, so that should help to some degree to feel heard and taken care of.  As for a device, yes, I had a Helex Septal Occluder, Catalogue Number HX1520 put in me through the groin.  I was only told to not lift anything more than a gallon of milk for 2 weeks, and I was also told I could return to construction after 2 weeks, even though I didn't and haven't; only light electrical work.  Perhaps I was allowed to do things too soon and it is hindering my recovery?
 

Posted By : rf1 - 1/16/2009 7:44 AM

S2k- Have you seen your surgent yet? What did he/she say they would reccomend you do with regard to the PFO still not being closed?

RF1

s2k said...
Had my PFO closue done in May 08, large PFO 22mm, bad news is its not fully sealed.....I have some good points, the migraines have stopped but I now have chest pains and achy legs....

S2k

Posted By : cattledog - 1/16/2009 9:31 AM

RF1, I haven't had any bubble tests since the procedure.  I think they did one during the procedure (before & after the installation), and I believe I recall them saying that there were positive results, but I was under the assumption that they would do another bubble check down the road. 

 


Posted By : rf1 - 1/16/2009 9:42 AM

cattledog- was just curious. Seems some people are saying that theirs have not closed as planned. At least with yours, it sounds like it did, and that should give you a little less worry. Best to you.

RF1

cattledog said...

RF1, I haven't had any bubble tests since the procedure.  I think they did one during the procedure (before & after the installation), and I believe I recall them saying that there were positive results, but I was under the assumption that they would do another bubble check down the road. 

 



Posted By : 01IRISH - 1/29/2009 9:01 AM
I have only had 1 bubble test ,but it and the tee are the most accurate in observing full closure of the pfo. my doctor insists that an echo is good enough, I totally disagree!!

Posted By : grs1 - 3/3/2009 8:29 AM
Hi Cattledog- I had a PFO closure a little bit more than a month ago. After the procedure I was feeling sort of the same symptoms you mentioned in your first post ["long sharp stabbing pain periods, low aching daily, ..., a weird feeling in the center of my chest that I can't explain except for those who have ran and after a long, fast run, you find your lungs burning...sorta like that, and overall aching if I do too much physical exertion, even yard work"].
I had my follow up visit with my cardiologist last week. After a normal electrocardiogram and ecocardiogram and a physical examination, the explanation/cause for the chest pain was that I had costochondritis, a condition that causes chest pain due to inflammation of the cartilage and bones in the chest wall. The doctor explained that a sharp, stabbing pain could never come from the heart. I hope this helps and you can rule out further heart complications.
Best of luck!

Posted By : withnail1969 - 3/9/2009 4:41 AM
Hello I'm new here and getting nervous!
I'm 39 year old mum with 2 young children, I had a mild stroke in June 08. I've been diagnosed with a PFO and decided to go for the closure option as I've had trouble with warfarin (high INRs and bleeding). I saw my neuro last week who made me anxious about the risk of stroke during the procedure and that it might not help my symptoms (palps, mild breathlessness, always cold and tired). I keep being told it's my choice and I just feel like I'm having a wobble about whether closure is the right thing for me..... I don't want to take a risk but I guess everything is a risk.

Posted By : tysmyboo - 3/11/2009 2:43 AM

withnail1969-

Welcome!!! I hate to hear that you have not received clear concise information to help you make your choice. I personally went in for PFO tests and did not have it, so unfortunately I dont have personal experience with closure and the following recovery.

My suggestion would be to speak to your healthcare provider, they need to give you all the necessary information for you to make an INFORMED decision and to feel secure in what you decide to do.

I hope that helps some.

Please let us know how things go!!

 


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Posted By : Refman - 3/13/2009 9:04 AM
Like many of you, I had a stroke and was subsequently diagnosed with a PFO. My stroke was the day before my 40th birthday. I have had very little carry over from my stroke. I lost the upper left quadrant of my vision for about a week. My MRI showed that my brain was damaged where my optic nerve passes through causing the loss of vision. The neurologist said that I was lucky in that the part of my brain that was damaged is a part I rarely use. Of course, this was good fodder for all of my friends to use to harrass me. It's almost two months later now and all feeling and vision has returned and most people are shocked to hear I had a stroke. I am so thankful for modern medicine, but never doubt the power of prayer...both are God given.

I had my PFO closure two weeks ago. I am so sorry for those of you who have had bad experiences. Mine was as good of an experience as a surgery can be. It was certainly an anxious time for me and my family but we got through it. The OR was cold but the staff did a great job of wrapping me in warm blankets until they were ready. I was under for the whole procedure so I don't know anything that happened after the ceiling went all wobbly. My cardiologist tells me that it was a perfect PFO closure and that he has absolutely no concerns for me. The bubble test they did after the closure in the OR showed no signs of leakage and he is confident that it will heal well.

I was pretty nervous about what to expect after surgery. I read many of the posts here before surgery and I talked to my doctor about some of the conerns. I was nervous about whether I would be able to feel the closure device. My doctor was very confident that I wouldn't be able to feel it and that if I did it would be psychological, not an actual feeling. I am happy to report that two weeks after surgery I have had no discomfort or feeling of the device at all. The card for my wallet that I have to carry that states what type of implant I have says to call 911 immediately if I have chest pains. Every now and then I'll have a single pain and think -- this is it -- but it is never persistent. All I can figure is that it must be gas or indestion. I did have a sore throat for about a week from the TEE and the respirator. I was told to expect that. Otherwise, I really couldn't be more pleased with the procedure, the level of care from my doctor, the follow up...it's all been exceptional.

The only thing I guess I have had trouble with is overcoming the thought of "oh my gosh, I have an implant...in my heart!!!" I haven't asked my doctor about it but I bet there is some sort of group therapy that I could get to talk about it. If I think too hard or too long about it I think about things like, what if it comes loose or what if it rubs a bigger hole and what if, what if, what if...? Then I think about all of the totally irrational things and realize that if any of these things were possible, they wouldn't have done the surgery. I really don't believe in conspiracy theories or that we're all guinea pigs. I believe my doctors have my best interest in mind and they are there to heal me and I am not there for their amusement. Once I put it into what I consider to be the right perspective, it's much easier to go to sleep.

And above all else...I trust in the Lord. I believe firmly that He allowed me to have a stroke to reveal this condition of the PFO while I am still a young man so that my body can heal more easily and I will have a long life on this earth. And if that's the case, then God is also going to allow me to find the right doctors who will provide the right diagnosis and perform the right procedure to help me live a long life. That is really the most comforting part to me.

Recovery is going well. Plavix and aspirin. No problems with either. Echocardiogram/bubble test in two weeks and then another echo at three months, six months and then once a year from now on. I am a football referee so I hope to be on the field again by the fall. For anyone reading this or waiting for PFO closure surgery, just ask a lot of questions. Write them down before you go to the doctor so that you don't forget anything. There are certainly hard parts to it, but it is do-able. Good luck to all.

Posted By : nervousmom - 3/13/2009 6:23 PM
Hi everyone,
I am scheduled for a PFO closure on March 26, but I may re-schedule. I am a nursing Mom and I can't take Plavix while nursing. My cardiologist suggested just using low-dose aspirin, but my stroke Dr. is very concerned about that, considering my genetic factors. I'm on Coumadin now and have since my PE/TIA after my son's birth about 18 months ago. Has anyone done a closure with just low-dose aspirin? I'd love the benefit of experience and knowledge from anyone who has had their PFO closed. Thank you!

Posted By : lthree5 - 4/20/2009 12:52 PM
Maybe not completely agreeable, or pc, but, stop nursing....and take the Plavix or whatever they want....it's best you're around long term rather than losing nursing time.

Posted By : lthree5 - 4/20/2009 12:54 PM
I had a PFO and ASA closed/flattened a little over three years ago after many TIAs and a stroke. I occasionally get a sharp pain deep in the left side of my chest. Does anyone else experience this? Should I be worried?

Posted By : Industry22 - 4/23/2009 9:57 AM
I wouldn't worry about it.  Serious device related complications usually occur within the first 6 months.  After 6 months-1 year the devices have sufficiently grown into the tissue and chances for perforations, dislocations, and fractures becomes almost non-existant.  Small heart flutters can occur, but if they're not consistant, I wouldnt' worry about them.  Considering they can occur in people without devices as well. 
 
To the nursing mom.  Finish up your nursing and then discuss closure.  This is an optional procedure.  You can take the medication or you can implant a device.  If your medication (Coumadin) isn't bothering you at this point, finish your nursing and then discuss closure options later, with your Cardiologist.  Amplatzer should be your first choice of device if you decide to implant one, it is the industry standard at this point.  Helex is also a good system as well with less metal, but the system is more complex, so make sure your cardiologist has a long experience implanting it... 3-5 years. 

Posted By : withnail1969 - 4/25/2009 4:20 AM

Hello everyone

I'm still waiting for a date for my PFO closure, I'm expecting it to be around June. I wondered what people have been told regarding flying after having the device fitted. My Neuro advised not to fly for 3-6 months but he also advised me not to have the procedure so I don't have complete faith in him (I won't mention his previous misdiagnosis etc etc!) Ideally I'd like to go away in the summer so would appreciate your experiences.

Thanks


Posted By : bbie - 5/30/2009 8:55 AM
Hello PFO People,
 
I'm new to this forum, 46 yr old male with an open PFO and Lupus Anticoagulant.   I had a kidney infarction 2 yrs ago and doctors just discovered that I have a substantial PFO.   Can't answer why they didn't look for that immediatley after the infarction.    Anyway, doctors are now recomending that I have PFO closure on June 29th which I'm now scheduled for.    Has anyone had closure and also the LA blood protien?   Any complications with this or concerns of clots forming on the device.   As usual, my mind thinks only the worst case scenarios.    Thanks for this forum, it's very helpful.
 
All the best

Posted By : microgoo - 7/2/2009 9:46 PM
I just had a PFO closure. I am confused as to whether we all are undergoing the same method. Mine was done via a catheter with an umbrella like device on the end of it. At first they thought there were 3 holes, a large one and two smaller ones but at a different angle it turned out to be one big hole that was shaped like a C.

I had to swallow a tube so they could get a better picture while they installed the closure device. Is this the TEE that is refered to above in many responses? I am on day 4 and have had only minor trouble. My heart either seems to skip a beat once in a while or maybe its a flutter. I can't actually feel it it on my chest just a sunken feeling when it happens.

Prior to this I had gotten a clot in my leg from a long airplane ride and it went through the PFO into my head causing me to lose hand and arm muscle motion for a day. They put me on coumadin and because it was first thought of to be multiple holes told me it would not be a good idea to get a closure. I sought a second opinion after being on blood thinner for 6 months and found a teaching doctor that specializes in this procedure. He has closed as many as 5 holes at once. Luckily ( I think )mine turned out to be just one big one. I was not having migrains that I am aware of. To me they were just headaches.

I will try and correspond on what I encounter in the healing process and post it.



- micrgoo

Posted By : withnail1969 - 7/3/2009 4:20 AM
Microgoo - thanks for posting your story. I'm waiting for a date for my catheter closure. Please do let us have updates of how things are going.
Were you diagnosed as having a TIA or stroke?
The TEE or TOE is the camera down your throat, not a pleasant experience.
Keep in touch!

Posted By : microgoo - 7/5/2009 7:52 AM
withnail1969,
 
They called it a stroke, but it did little damage and I made a full recovery in a few days. That seems to fit the definition of the TIA.  I actually had two within about 3 months. The first was so slight I didn't even know what it was and did not get treated. When treated for the second they said I had two mini strokes and they were both in the same region. Also like someone else they were in an area that is not used much.  I had a concusion from falling off a bike at age 12 and there is a part of my brain that is not active according to some test. None of this was disabling and my life was normal. Unloaded grocery trucks for money to finished college, became an electrical engineer, got drafted for Vietnam upon graduation, etc.
 
I am on day 6 and the fluttering or skipping has gone away. I don't have any pains. I am not pushing myself.
I will try to keep from lifting over 10 lbs for the next two weeks. It's easy to forget because if your feeling good, you have a tendancy to get back into the game. I won't will be going to the gym for about 6 weeks.
 
I am on 325 mg of aspirin and 75 mg of plavix for the next 30 days. After that I don't know if it will be that same amount of aspirin or one or two of the baby aspirin.
 
I do have a question about driving. I got different opinions from the hospital on it. The pre op consultation said about 4 days. The post op said about 1 week. One nurse told me three weeks.  Another nurse said two weeks, and a call to the cath lab said about a week. Any ideas what is normal? My catheter entry point healed just fine.  My sore throat from the TEE lasted about 2 days.
 
Thanks for the reply,
 
microgoo
 
 

Posted By : microgoo - 7/6/2009 10:29 AM
withnail1969,
I read your post asking about air travel. My instructions say no air travel for 6 weeks. Still no feedback on when to drive.

Regards,
microgoo

Posted By : withnail1969 - 7/6/2009 11:55 AM
Thanks Microgoo. 
I've been told not to drive for 1 wk only and could fly within a month. I probably wouldn't fancy it though especially as I'd be off warfarin after a year of taking it. I can't wait to get my date to get sorted.
How are you feeling today?
 

Posted By : KTM94 - 7/23/2009 3:04 AM
I am 33 have had 3 small strokes in the past 3 months due to extreme migraines and chronic head pain I live with everyday. I went to the cardiologist to have things tested with my heart make sure things were going as they should, come to find out I have a hole the size of a lime in my heart. I immediately became the perfect candidate for a PFO. Within minutes I was scheduled to come back within 4 weeks to have this suregery done and see what results came of it. I was told that I would not feel or remember anything and it was a really quick surgery and a one night stay and a few medicines I will go home with. Ok I was scared to go on with the surgery (I mean who isn't when you know someone is messing with your main vein and heart). lol
 
I got my kids all taken care of and off to the hospital me and my husband went on June 30th, 2009. I was already scared to even be there and then it got worse when the Dr. was behind and I had to sit for another 2 hours waiting. UGH!  The IV in my hand was scary within itself (never had one even when I had given birth to 4 babies). Then when I was wheeled into the surgery room it was freezing and I was alone with all these strangers. The nurse talked to me a little bit, but I had the worst migraine (topping any chart) that it was really hard to concentrate. They scrubbed me up half my belly, and thigh with a blue stain (makes you look like a smurf  smurf  ) then they gave me the medicine in my IV that is suppose to be the "wonder" drug of all drugs to make you forget and feel calm. Well it really made me feel calm but I never forgot anything and still felt my head pain.
 
They started the numbing of the leg and that hurt like a bit of a bee sting and then I was numb I guess. I didn't feel anything until . . . WOW!! They hit the right side of my inner chest thru the main vein (thought I wasn't suppose to be feeling this?) I said something to them and I guess they upped the IV med a bit. Then WOW!! They had just moved onto the middle of my chest man that hurt and then WOW!! they must have just hit the heart. Now when I say this hurts and I can feel it I CAN FEEL IT!! They gave me a bit more drugs in my IV. Now my body does not take medicine like a normal persons body does. If you were to take some narcotic it would probably wipe you out and your would go to sleep, see ya in the morning type thing. Ok me? Um NO I get a notch or two or pain relief and just deal with the rest of the pain. Medicine really doesn't take in my body.
 
Well they finished up, took me to the recovery room, and then after a few poking and prodding took me to my over night room. I really couldn't feel anymore chest pain but man did my head hurt still!!  I finally took a sleeping pill and was out. Since the surgery I guess due to the Plavix you are given to take for a period of time I bruise deep black and blue bruises, looks like I am abused or something. You never really realize how much you hit yourself or things that hit you leave a mark until now. My leg is extremely sensitive and bruised at the sight.
 
After all is said and done, if you deal with Migraines 1  2  or 18 a month like I do, I would recommend you have this PFO surgery in a heart beat!! Even if you pay the hospital bill $25 a month for the rest of your life, nothing will ever compare to having a day without pain like I have been given!!!  I dealt with minor headaches everyday to up to 4 migraines a week, and I mean the extreme, puke your guts out, lay in a black room and hush your kids to a mute silence household migraine. Now I think in the 30 days I have had maybe 2 migraines but not the extreme ones I was having. I have had really hard time in my life not wanting to be here a few times due to constant pain and if I can reach any one out there that deals with migraines or you read this and tell someone about it, I will be so happy to tell you JUST DO IT!!! You will NOT regret it! It will be scary til your done but it is SO WORTH IT!!!  Don't listen to your neurologist who says it will have nothing to do with your migraines, I am living proof OH YES IT DOES!!
I would do it all over again (even to go thru the chest pain I had during surgery and the many days I cried before scared and after cuz my leg hurt). I wish you all who have migraines the best of luck and that you will find the comfort of a pain free day like I have. I never thought this day would come!!

Posted By : anwahs - 10/21/2009 2:54 PM
eyes   Hello everyone, I am new here to the forum. I am a 36 year old female and I just had a PFO closure done last Thursday. Today is the 6th day after my surgery. I am still having a mild headache, some chest pains when sleeping on my sides, tightness in my chest, and of course my groin is sore. I had TIA's last month September 16th to be exact, and less than a month later I was scheduled for surgery, I have to say I was scared to death, as far as I know because of course I was completely knocked out, but was told it went smooth. Now if you read the risk factors before surgery it is enough to make you question should I do this?  Weighing the odds that I could have more TIA's and possible a Stroke ( at any time) I went thru with it, but now Im having things happen that wasnt happening before. Oh yeah and some blurred vision has occured. Go figure fix one thing and it causes 10 more things to go bad. I was on warfarin( not a good med.) before the surgery, very hard med to regulate, took it one time right after surgery and the next day they put me on Plavix, couldnt  give me asprin with it cause im allergic to asprin.  After reading that some of your surgery expierences havent been successful with the closure, im wondering what the success rate really is. I go back to the surgeon(cardiologist) next monday so hopefully they schedule the TEE and bubble test again. Good luck and good health to all who have a PFO.

Posted By : cs33 - 10/22/2009 8:45 AM
eyes  HI! I am also new here, I have been reading these for the last couple weeks trying to prepare myself for my PFO closure. I am 23 year old female who just had my closure done last friday October 16th. I was just curious (if anyone still replys here) other than headaches and cheast pressure for side effects after how did the groin heal for everyone? I am still sore and now have a lump that is very sore to touch. The doctor wants me to come in today to check it out....anyone else have this problem?

Posted By : anwahs - 10/22/2009 1:35 PM
My groin is sore, but it has only been 7 days for me, and it says it doesnt dissolve for 3 months..

Posted By : cs33 - 10/22/2009 2:15 PM
wow....is that what your doctor said??? My doctor told me I should only be sore for a few days that I could possibly have a lump for 2-3 weeks after. But because I am still so sore and the lump is getting bigger he wanted to see me. I am only 6 days post surgery but he said it is a hematoma and to watch it and if it doesnt go away within a week to go see him again. I'm so confused as to why I read that some recoverys are so long and my doctors made it seem like it is short and easy....how is yours anwahs???

Posted By : anwahs - 10/22/2009 3:26 PM
I had my surgery last thursday so today has been a week......if you read the occluder paper they give you it even states that the plug they put in could take 90 days to dissolve. I have a huge lump in my leg and its still very sore. I have shortness and tightness of breath in my chest. I just found out in september I had this, a TEE was done after I went in the ER for dizzyness, tingleing in my arm, face,and leg on the left side. A month later they had me scheduled for surgery. The surgeon I see is in Tampa Florida, and he is world renown for doing this surgery. It was a scary expierience. But now I have bad headaches, and  I have never really  ever got headaches.  Im confused to at the recovery process, cause I didnt feel this bad before I had it done, and after reading on here everyone elses recovery, Im still scared.

Posted By : cs33 - 10/23/2009 5:39 AM
oh yes the device they did tell would take 3-6 months to be completly covered by the tissue of my heart. When you went to the ER did they diagnose you with a TIA by anychance? Thats how they found mine, I have had 4 episodes of now I know were TIA's since I was 18 and this last one my husband made me go to the doctor and they started doing a bunch of test to find the PFO, like you within a month I was scheduled for surgery. I am in Houston with a doctor that is suppose to be the best at what he does but we will see how far I get... :-)   I'm sorry you have been getting bad headaches, I had them before so that isnt new to me but the pressure in the chest, tightness and shortness or breath is what scares me. But it seems like most everyone has had that, hopefully it wont last long for us!

Posted By : anwahs - 10/23/2009 7:18 AM
Yes they diagnosed me with TIA'S. Was my first episode that I ever noticed like that and I am 36. Yeah I dont like the shortness of breath either. The doc told me, 2-3 months for heart tissue to close over it and up to 3 months for the plug in my leg to dissolve. Its all still scary, have you had chest pains....I have, alot when I lay down to go to bed. Never had those before. Keep me posted on what the doc says about you. I go on monday the 26th so I will ask alot of questions to and give you a heads up. I know everyone is different but seems like alot of us has been expieriencing alot of the same side effects. Have a great day!!!

Posted By : cs33 - 10/23/2009 7:26 AM
yes it has been a very scary expierence, I often then if I should have done it. I dont really have chest "pain" but LOTS of pressure and tightness....it seems to be happening more the last couple of days, yes when I lay down especially. I dont see why that has to be so "normal" for this! Keep me update on what your doctor says and I'll do the same! since I went yesterday as of right now I dont go back till Nov. 10th. Hope things start getting better for ya!!

Posted By : anwahs - 10/23/2009 7:21 PM
Just left the hospital and my sister in law had a heart cath, i told them about my PFO they checked for it in her and OMG she has a big one. shes having a TEE on Monday. She has been having TIA's for a year now. The doctors said it was acid reflux....thank god the doctor humored her so to speak....unreal!!! yes I will definantly keep you  posted.

Posted By : mandi2cool - 11/20/2009 6:20 PM
HI
 
I am a new member, a 19 year old female.  I was diagnosed with a small-moderate sized PFO in April.  Prior to this, I had been having constant headache's (24/7-365) with miagraines about 5 times a month.  I had also been having sharp shooting chest pain that caused me to double over and pay attention to how I slept at night.  I also started getting dizzy/lightheaded all the time with no apparant reason.  I have been to two cardiologists now that are both in favor of waiting to close the PFO after more research has been done.  I had an MRI, EKG, Echo, and a TEE but they still didnt want to do anything, even after showing the vast communication between the two chambers.  So for the quick fix, they agreed on 81mg of Asprin a day and have pretty much let me be.  However, I am still having the chest pains and contstant headaches/numerous miagraines after being put on a handful of different meds to "help" with this-so far nothing has worked.  I am a college athlete, and sometimes the chest pains/miagraines get so bad that they interfere with training and performance, and even with school. (Going to class with a miagraine just isnt a good time)
 
I guess overall, I am just looking for opinions on whether to close or not to close.  I just want the symptoms to go away for good.  Any help would be appriciated.  Thanks so much
 
mandi2cool

Posted By : missmac66 - 12/23/2009 3:07 AM
Hi, I am a 43 year old female and new to this forum. I had 2 TIA's in july 09 and after extensive investigations a large PFO has been found. I am seeing a cardiologist on dec 31st to discuss this but the dr who did the bubble study said that it definitely needed closing.
I am absolutely petrified but at the same time glad to find out what caused the TIA's. The only knowldege I have so far is what I have gleaned from the internet as the dr rushed off for his lunch without even removing the canular, which was only successfully inserted on the 6th attempt!!
How long have people had to be off work after the procedure? I have had a fair amount of time off this year already & am hoping that this will not take out too much more time.
Be healthy & happy xx

Posted By : loopie53 - 12/25/2009 10:31 PM
I am 38 and just 4 weeks past a PFO closure. I am amazed at what I am reading, as these are exactly the symptoms that I was experiencing! Migraines with visual auras, mini strokes (is there such a thing as a MINI?) and so many tests done that I thought there were no more to do..... After multiple surgeries concerning other things, I was diagnosed with the PFO and my neurologist sent me right to the cardiologist for the closure. It all happened so fast that I hardly had time to contemplate it all. I have since made one "flight" back to the ER, (the day after my OUTPATIENT surgery,) and have been battling with the stabbing pressure in my chest as well. I have been woken up from sleep with it, have been nagged ever since by it, and am now walking around with a heart monitor to see just what my beating heart is up to during these trying times. I am awaiting the "official" reading of the monitor results from the cardiologist, and have not returned to work yet. I was optimistic to get back to work after just a few weeks, but since I'm responsible for so many others at my job they don't want to chance anything by letting me come back until ALL the dust has cleared, so both my cardiologist and my neurologist have to give me the final ok to return. To others that are considering it, all I can say is most all of my symptoms are gone. I do, however, occasionally experience my migraines with the aura, namely as I was being wheeled out of the hospital after the closure and also the day afterwards. I'm not sure wether to contribute that to stress or what, but I can't say I'm migraine- free just yet. I have been battling near seizure-like activities since before the closure, and most have subsided since. Not all. Overall I feel wonderful! ....if they could just figure out why this POUNDING heart is doing all it's POUNDING........ hmmm.... I'll keep you posted!

Posted By : chi town girl - 1/10/2010 2:50 PM
Hello, I am new to the site and to the congenital heart defect "club"! I know I have had this since birth and that 25% of people probably share this defect with me, but it is weird to all of a sudden be included in the club... but after reading, this seems like a pretty good group of people to be associated with!

Thanks to everyone who has posted such good information on PFO closure!

While I am new to the site, I'm not new to the symptoms that are leading me to consider PFO closure. I have bad migraines, seizure-like, for almost 24 years and TIA's for the last few years. Now my doctors cannot decide if my medium-to-large sized PFO should be closed.

Can I ask you who have had closure:
- do you still have migraines? If so, how often, and how bad, and how soon after closure did they start again? Have you had TIA again?
- how do you feel after closure? can you do all the things you did before? more? less?
- have you had side effects? if so, what are they? afib? rapid heart beat? blood clots? pain?


Thanks again for all your help. I am scared of this whole "putting a dual umbrella into your heart for the rest of your life" and am trying to decide if it is right for me...

Hope the new year is a good one for everyone here! Thanks for having me in the club...

Posted By : mghnn23 - 1/14/2010 11:49 AM

Hey Everyone!

 

I had a PFO closure on Monday January 11, 2010.  In March I suffered a car accident in which I broke my neck and my wrist.  In June,  I lost 30% of my vision in my right eye due to an inferior branch retinal arterial occlusion.  It is still unclear whether or not the clot was left over from the surgeries in March or possibly due to oral contraceptive. In August I had a syncope episode in which I fell and broke my nose.  This trip to the E.R is where I met my cardiologist.

            She first suggested I see a neurologist to eliminate any other possible problems.  This turned out to be fine.  She next ordered an echocardiogram to be done with a bubble test.  This is where the PFO was discovered. A TEE was then performed to see the exact location and size of the PFO. 

            Experiences:

Echo: doesn’t hurt at all. The tech will have you breathe in and out and hold it for clear pictures, while holding an ultrasound probe around your heart.  For a bubble test, you will have an IV and a saline solution will be injected and you will be asked to tighten your abdominal muscles.

TEE: This test was not a lot of fun…at all.  The procedure begins with numbing your throat.  I began with gargling a solution in the back of my throat (be sure not to let this touch your tongue!). Then a spray was applied to the back of my throat.  Once this has been done you will have to consciously swallow every bit of spit in your throat or you will accidently inhale it and a coughing spree will occur.  I was then given pain medicine to relax me and some of that “forgetful” solution during the actual insertion of the tube.  The procedure it self is very short and quick.

            The PFO closure,  I was given many pain relievers and again some of that la la forgetful stuff, but I was able to watch the entire procedure.  Of course I could have easily fallen asleep. The procedure itself didn’t really hurt except right afterwards I would suggest not trying to sit up at all and lie as flat as you can.  If you do you may feel a tight chest pain or as some people have described it a “stuck chicken bone” feeling.  For me after about five hours I didn’t feel anything else in my chest.  It is three days later now, and I do have a local pain at the incision site.  It throbs from time to time, but nothing unmanageable.  The only thing I have experienced is dizziness.  I am not sure if this is from the plavix and aspirin they have me on or just tired from the whole ordeal. Also, no heavy lifting or exercising for a while.

            I didn’t have migraines though so I cannot comment on that, but I am glad my chances of any occlusions or strokes in the future have diminished a lot.  Plus, I can scuba dive now without any complicationsJ. Oh, and the second echo after the procedure you can see the little double umbrella or figure eight just perfectly. I didn't have any inflammation or anything around the site...it's just part of me now.


Posted By : wildchild42 - 2/6/2010 5:23 PM
Hi,
 
I'm 18 and was wondering if there was anyone who has had a stroke as young and is having a TEE and could tell me about it. Does it hurt? How long after you have had it will they tell you they can close the PFO. What happens if they can't close it. How long does the TEE take. Do you have to stay in hospital after closer. how long before you can get back to normal. Do the headaches after a stroke get any better. Do they go away after closer. What are the risks of closer.
 
Thanks

Posted By : Mark in Denver - 2/18/2010 1:42 PM
Hi everyone -
 
I had a PFO closure two days ago on February 16, 2010.
 
I chose the PFO closure to prevent me from having more strokes.  I had a mild stroke in November 2005 and another in November 2009.  In 2005, my neurologist recommended a PFO closure after performing the TEE procedure.  I was 47 years old at the time and he wanted me to enroll in a blind study where I would either receive the PFO closure or take coumadin to support study results.  That didn't sound too fascinating at the time and I felt confident that I would be okay.  After my second stroke, I decided that I wanted to learn more about the PFO closure and researched many web sites ... including this newsgroup which I found extremely helpful.
 
The cardiologist that I chose (wonderful!) also educated me about the procedure including that there are "no promises" of preventing future strokes.  The team at Rocky Mountain Cardiologists were simply the best!  This procedure is regularly performed and the catheter lab was well equipped.  The doctor chose the AGA Medical Corp's Amplatzer Occluder to close my PFO.  It is a very soft/pliable one piece device that was easily inserted in the PFO (the cardiologist had a "sample" device that he showed me).  Mentally, for that reason alone, I don't feel like there is anything solid or uncomfortable inside my heart.
 
The procedure was very comfortable.  I don't care who you are ... you gotta love that wonderful, magic "cocktail" that you get!  As others have said, I was not fully asleep but could have easily done so.  I did not have a TEE during the procedure but was able to watch the insertion of the Occluder into the PFO on a screen in the cath lab.  It was amazing to watch!  I did not feel a thing.  The cardiologist talked to me during the procedure but I don't remember much of that.  After removing the catheter pressure was applied to the area for several minutes and then a large, clear patch was put over the entire area.  Honestly, the area where the catheter was inserted was no bigger around than a pencil.  I did have to lie still for 3 hours but was up after that and then discharged to go home.
 
The absolute worse part of the whole procedure was the following day when I pulled that large, clear patch off while taking a shower.  I'm sure the neighbors heard me.  I have some bruising around the groin area and (no kidding) a big red area after I jerked that patch off (LOL).  I have used no pain medications.  Someone said that they couldn't sleep on their side after the procedure ... I thought about that (like pinching the device or something) and then convinced myself that I was nutz and have had no trouble sleeping on my side after that.  The doctor has prescribed Plavix for 6 months and a lifetime of aspirin.  I don't have a check up for 4 weeks so I'm sure the doc is pretty confident that I did well.
 
So far, I can't tell you how happy/glad I am that I chose to have the procedure done.  I will add more comments as time goes by.  Thanks again to everyone who has added their notes.  It really helped when I was preparing for the precedure.

Posted By : Mark in Denver - 2/19/2010 12:24 PM
wildchild42 said...
Hi,
 
I'm 18 and was wondering if there was anyone who has had a stroke as young and is having a TEE and could tell me about it. Does it hurt? How long after you have had it will they tell you they can close the PFO. What happens if they can't close it. How long does the TEE take. Do you have to stay in hospital after closer. how long before you can get back to normal. Do the headaches after a stroke get any better. Do they go away after closer. What are the risks of closer.
 
Thanks
 
Hi wildchild42 ...
 
I am sorry to hear that you have had a stroke at your young age.  You are so lucky that medical procedures are so advanced today.  You have several important questions that you need answered, and like all the rest of us in this newsgroup, you just need to find a cardiologist that your are comfortable and confident with.
 
I am happy to share my personal experience which is the same as others in this newsgroup have described.  A TEE is really no fun at all but is certainly tolerable.  I have had two endoscopy procedures prior to the TEE so I had already experienced having a small tube inserted down into my stomach.  The TEE is not too different than that except that the ultrasound device is position right behind the heart for a clearer "picture" of the heart than an echocardiogram.  While the device is in position, aggitated saline is injected ... you can actually see the bubbles in your heart ... then you are asked to cough ... if you have a PFO you will see the bubbles shoot through the hole into the other chamber of your heart.
 
As someone said, you throat is sprayed with (my term) a "paralyzer drug" because you just have no gag reflex at all -- which is pretty important.  The doc gives some of that good "cocktail" drug so you are uncomfortable but you really don't care too much.  The procedure itself only takes a few minutes -- and the good news is that the whole video is kept of file these days so I did not have to repeat the procedure when I chose the cardiology team to do the procedure.
 
After an in-depth consultation with the cardiologist, he agreed to perform the procedure right away.  I personally had to wait two months for my insurance company to pre-approve the procedure.  The cardiologist was great and he worked with the insurance company and had a peer-to-peer review with the insurance company's doctor(s) to review my case and eventually I was approved for the procedure.  I don't know where you are located but I am in Denver and am lucky to have been referred to an excellent team of doctors who are dedicated to healing people every day.  When scheduling the procedure I was told "the doctor does this procedure every Tuesday afternoon."  Well, its not just the doctor but the whole team of doctors, nurses, etc. in the catheter lab that are practiced to do this and many other procedures.  While being prepped in the cath lab for the procedure, a "new member" to the team asked "what procedure are we performing this time."  The head guy said "Dr Rubenstein is doing a PFO closure today -- watch -- he can do this with his eyes closed."  The procedure took less than one hour.  Before leaving the cath lab, pressure was applied to the area where the small catheter was inserted and covered with a clear patch.  I had no bleeding after that.  I rested for three hours in a nice recovery room, walked for 15 minutes or so and then was released to go home.  No lifting over 10 pounds for a couple of weeks and no aerobic exercise for three weeks.  I have a desk job and could have gone back to work in as little as two days .. otherwise one week off work was recommended to me.
 
I hope this helps.

Posted By : kaiborder - 3/22/2010 2:35 PM
I am scheduled for PFO closure in April tho my insurance has denied it. Hoping my doc's appeal will go through since I have had multiple multiple strokes already.

Posted By : AEV1970 - 3/27/2010 6:44 AM
Hi Industry.  Thank you all so much for sharing your experiences.  In the process of deciding whether to have this surgery and strongly leaning towards doing so.   I am a 39 years old mom of three little children and I had a stroke a month ago after scelerotherapy for a varicose vein.  I was pretty active, healthy, and I guess a little vain as I approach 40 and looked down and saw my mom's blue-lined legs.  Vascular doctor thinks it is unlikely that the theraputic clotting had anything to do with my stroke, but the cardiologists consider it likely.  On blood thinners now and feeling better.  Didn't know I had a PFO--honestly didn't know exactly what a stroke was before this all happened to me.  Looking back now I see I probably had a TIA last year but thought I was overtired or coming down with the flu.  I also had many occular migraines while pregnant--no pain just visual disturbances that the OB/GYN office suggested was hormonal.  (Note to self: Get new OB/GYN)  Bubble test in hospital was postive for what was described as a small, subtle PFO.  I live 5 minutes away from a top hospital with a pediatric center that specializes in PFO Closures.  To be fair, the neurologists and cardiologists did mention many people are walking around wih PFOs but they were concerned that having had an event, the fear of another would be a dark cloud hanging over me.  I am a celiac so living on blood thinners isn't too attractive; I have a restricted diet and balancing nutrients and INR is already turning into a nightmare for the past month.  The physicians recommend a Biostar device for my closure.  While they made mention of the Amplatzer as another device they use, this was not suggested for my surgery.  I mentioned I have a contact nickel allergy; something they said would be less of an issue with the Biostar---but your comment about industry standard makes me wonder about the many other devices and if I should get yet another opinion.  Also, I should mention I just found out that a member of my husband's extended family had a PFO occluder put in over 20 years ago--she had it done after a massive stroke and was one of the first people to receive this implant.  It was an umbrella-like occluder, maybe even an early Biostar and she has raised three children and is healthy and active.  Just thought you all might like to know that there is some good long term results and I am sure that many of you miay be wondering what happens in 20-30 years after implant.
 
Industry22 said...
I wouldn't worry about it.  Serious device related complications usually occur within the first 6 months.  After 6 months-1 year the devices have sufficiently grown into the tissue and chances for perforations, dislocations, and fractures becomes almost non-existant.  Small heart flutters can occur, but if they're not consistant, I wouldnt' worry about them.  Considering they can occur in people without devices as well. 
 
To the nursing mom.  Finish up your nursing and then discuss closure.  This is an optional procedure.  You can take the medication or you can implant a device.  If your medication (Coumadin) isn't bothering you at this point, finish your nursing and then discuss closure options later, with your Cardiologist.  Amplatzer should be your first choice of device if you decide to implant one, it is the industry standard at this point.  Helex is also a good system as well with less metal, but the system is more complex, so make sure your cardiologist has a long experience implanting it... 3-5 years. 

Posted By : jwillis - 4/5/2010 4:33 PM
I am a new member to this forum and thought I would post my story so it might help someone else who has a Patent Foramen Ovale (PFO), Atrial Septal Aneurism (ASA), or resulting stroke(s). As I write this, I am currently at home recovering from a PFO/ASA repair three days ago. I am a 49 year old male. On Valentine's Day morning, I woke up with my head spinning like crazy. It was actually, just stopping spinning as I got up and went into the bathroom to collect my composure and see if I was OK. I immediately broke out into a complete sweat and soaked the floor. I wasn't sure what was happening so I washed my face and dried off and went back to bed. I was very dizzy and started throwing up. I ended up spending all day in bed, because if I got up out of bed, I would get terribly nauseated and throw up. I just thought that I had the flu because I had felt weak all week long. I just couldn't get going and work hard in the weight room on both days that I went there, and I also felt exhausted on my morning runs and bike rides. I am a triathlete and work out twice a day on weekdays and run or bike up to three hours on each weekend day. My wife and I had also begun attending a mixed martial arts class three times a week, and I had just piled this workout on top of everything else I was already doing. This added up to three workouts a day sometimes and at times I was beginning to realize that I was going way too hard. The only reason that I didn't go for a two-hour run on Valentine's Day is because I woke up sick with my head spinning. The spinning "spell" was like a seizure, in that I lost body control of my arms and legs and fell around like a rag doll. I was miserable and tried to sleep but kept having nightmares. At about 2:30 am, I started hearing buzzing in my ears and had another spinning attack/seizure. It felt like a ring of fire spinning around my head. I remember thinking that if this was Satan's version of hell, that this would work. I ended up staying in bed all day Monday as well, assuming that I had the flu and that it had attacked my inner ear, causing the dizziness. I stayed in bed another day, then when I began feeling stronger, I went to my PCP for a checkup and he ordered an MRI after hearing about my symptoms of sea sickness and pyschotic thoughts that continued even after I got up and stayed awake. To make a long story short, the MRI came back positive for stroke in two places, or two strokes...I'm not sure which...I definitely had two stroke-like events or seizures. This lead to an appt with a neurologist, who prescribed two weeks of tests...bloodwork, CAT scan, x-ray, TTE heart echo, carotid doppler test, etc. and eventually a TEE which showed that I had a PFO and ASA. After those were diagnosed, he referred me to an interventional cardiologist. It is interesting to note that I had already been taking an adult aspirin each morning for over a year after having some funny feeling heartbeat rhythms about a year and a half ago, which I think may have been due to drinking caffeine each afternoon to stay sharp at work. After I quit drinking caffeine, the strong heartbeats went away. The cardiologist explained the debates and risks about PFO repair, and future limitations, recovery, etc., if I decided to have it fixed. He said it was my decision, of course, but I had already had one or possibly two strokes, and had failed aspirin therapy. So, I had the procedure last week. The cardiologist used the catheter procedure up my leg and installed an Amplatzer occluder in the atrial septum. After the procedure, he said that the hole was a "medium" sized hole of about 4mm. He had planned to use a 30mm device for the patch, but during the procedure discovered it would be too big, so he used a 25mm device. He said my atrial septum is thinner than normal, so using a big patch like this is supposed to help support the atrial septum and keep it from "waving" open as much. The PFO is the hole, but the ASA is a bulging of the thin flaps that make up the two sides of the atrium. The procedure went very smooth. I was very nervous, but the doctors gave me a lot of the Versaid to "get me to stop talking" and help me settle down. I was fine with this, because I didn't want to be very awake anyway! They used both an x-ray machine and TEE scope to monitor their progress as they installed the occluder. The only hard part of the procedure for me was the recovery...the nurses tied my right leg down to the bed with a folded up thin blanket and put it under my left leg and between the mattresses on both sides to hold it and my right leg down. I had to lay still in this position for 24-hours so the cathether insertion point in my right leg would heal and not bleed, plus, they said it was to help keep the device from becoming dislodged in the first 24 hours. I'm not so sure that the device was apt to move, but the nurse told me this, I think, to keep me from trying to get up during the night. Sitting in this single position was miserable, plus I just could not make myself relax enough to pee into the urinal they gave me. I have always had urinal shyness, and this felt like I was peeing the bed. We are all taught not to wet the bed and I just could not overcome this. Anyway, morning finally came and I was able to get up and go to the bathroom and completely empty my bladder which helped a lot. Once I could get up and move around and sit in a chair, I started feeling much better. Now it's been three days since the surgery and I am feeling really good...almost normal. I was pretty weak and lethargic for two days after the procedure. My leg is healing well...just a little bit of bruising and a bump where the catheter was inserted. The cardiologist said not to exercise for a week, then I could start light walking and very light cycling, then begin building up to light jogging with no jarring or "shocking". In other words, keep it really low impact. No swimming, weight lifting, or archery bow pulling for six months while the occluder patch healed into the heart tissue. He also said no contact sports for the rest of my life...football, basketball games, etc, or martial arts sparring. I hope that I can eventually do some martial arts training again. Hopefully, I will be able to do some that is low impact. The doctor's concern is that a jarring of the body might dislodge the device. He said if that happens, I will be in serious trouble. So far after the repair, there have been no new, bad symptoms. I still get a little bit of the erratic heartbeats which feels kind of like a delayed beat, then one that is really hard. I had this symptom for the past year. I guess it started at about the same time that I started taking aspirin and quit drinking caffeine. It is just kind of annoying, but everyone tells me that my EKG and heartbeat rhythm is totally normal. I still have just a bit of a dull chest ache from time to time, usually at rest, in the center of my chest or in my left pectoral region near the rib cage. I kind of think this is might just be muscular soreness from feeling the irrithymic beats or dull ache, then rubbing the muscles to see if they are the problem. Another symptom is that I have always had migraine aura for as long as I can remember. It would only happen once in a while...maybe once a month or once every three months. It was classic migraine aura with vibrating rainbow shaped blurred vision that moved from one side of my left eye to the other, then it would sometimes end with a light headache. I also had them several times a day for two or three days after the stroke. Well anyway, that is my story. I'm hoping for a complete recovery and looking forward to the reconditioning progress as the doctor gives me the green light to increase my exercise. The cardiologist has ordered a follow up echo exam at one month and three months. Jim

Posted By : lthree5 - 4/23/2010 9:30 AM
jwillis - I have a pain in my left side, deep under my ribs once in a while too, but, doc says I shouldn't feel it.  I felt this with the first one too....yep, just had a second one done last Monday.  Had a large shunt still from one I had done over four years ago.  I also have this "chicken bone" feeling in the middle of my chest that some people talk about.  I'm hoping that was from the TEE and will go away in a few weeks.  I'm glad to hear you talk about that heartbeat too, with this one I'm getting a little slow beat and then a hard one.  Hoping it will resolve itself too.  Going Tuesday for a follow up echo.
 
I had recurring vertigo for a year before I had the stroke (4.5 yrs ago) and they didn't find the PFO/ASA until I actually had a stroke.
 
I'm nervous about any activity too....because of the ASA, I feel like it could "pull loose" or something.  But, dr. did not mention this.
 
Good luck to you!

Posted By : LammingtonMan - 4/24/2010 4:18 AM

Hi Everyone,

I am 39 yo male living in Brisbane Australia. I read this forum from start to finish after my stroke and found it to be a great source of comfort during a very confusing and distressing time in my life.

 

I am writing to help provide some feedback to people considering a PFO closure and I would like to thank everyone in this thread for their input. You have no idea what a relief it was to find some "real" people on-line who were going through the same thing as me.

 

History

 

As far back as I can remember I have had migraines.

Sometimes 3 per month lasting 2-3 days. I have aura with them - you know, speckled vision, vomiting etc. I had CAT scans etc at age 11 and then 15 and in my early twenties and various other tests. No one found anything wrong with me.

But I knew there was something wrong but believing I had seen plenty of doctors and had plenty of tests, the problem must be just "something I'll have to live with"

 

about 2 months ago I had a TIA/Stroke - lost ability to speak or write for 24 hours with a full recovery within 48 hours. It was a huge shock. I never go to the doctor. Never get a cold. While everyone around me can be struck down with various flu's etc - I seem to be able to fight them off. I am fit. No diabetes, no high blood pressure or cholesterol. I have never had a day of sick leave in 22 years. SO this stroke came as a shock to me and my family.

 

I have noticed the following symptoms over the past 5 years:

1. Tired eyes - I am getting tired sore red eyes every day. By 2pm my eyes are dry and irritable

2. lack of "life energy" - I seem to have been feeling like I was living in a fog. Nothing had the crispness of sharpness I remembered as a younger person

3. Mild depression - struggle to get through the day. Become more effected by others actions. Feel like the world was not somewhere I could thrive in

4. Basically a reduction in "LIFE FORCE" - I just thought I was getting OLD!

 

Then at 39 I had a Stroke/TIA

 

So I went to hospital in an ambulance. Had all of the tests.

 

What followed was the discovery of a large hole between left and right atrium sections - PFO. The hole is between 15 and 20mm.

I had the TOE test and that was the only test that showed the hole.

 

So firstly, if you are having migraines with aura and suffer from sore eyes and have noticed a general reduction in the enjoyment of life in the absence of all other stroke risk factors ask your doctor for a TOE test and they might just find you have a PFO. The TOE procedure is quick and painless apart from a sore throat for a few hours after the procedure.

 

I elected to have the hole plugged up with an Amplatzer Occluder device. The operation took 1 hour and 20 minutes. The procedure was successful with the bubble test showing only a few bubbles pass through however my surgeon told me this is normal and that over time the heart's own tissue would cover the device and the device would become part of my heart wall.

 

So, am I glad I had the procedure?

 

You bet I am!

 

The first thing I noticed was that my eyes were not sore anymore. I am guessing a clean feed of blood to my head was providing my eyes with well oxygenated blood. So for once in my life my eyes were getting what they needed to function normally. I awoke in my bed in hospital after the operation in a room with an extremely bright light. I was able to look directly at it without any discomfort. This was something new to me. I have always avoided bright light. So instantly I could detect a change and slowly I started to join the dots and look for other aspect of my health that had improved.

 

It is now 10 days since the procedure and I feel great. The only pain I have is in my groin but that is going away. I had severe bruising in the groin area. I was not told about the groin pain or bruising before the operation. But take it easy for a week after the operation and you should be fine.

 

Also I have not had a migraine or even the dull headache I just live with everyday. I have never taken medication for my headaches as I seem to be someone with a high pain threshold and I basically don't like taking medicines. No anti-biotic - no aspirin etc.

 

Now I take 300mg of aspirin every morning with food and I have been told to do this for the next 12 months.

 

My energy levels are back to how they were when I was 20 years old and I feel more positive about life. I feel better.

 

In a few weeks I will start exercising again when my body tells me it is ready. Listen to your body and only start full work and sport regimes when you know it is the right time.

 

I am slowly getting a rhythm back into my life and enjoying it.

 

The stroke/TIA has made me appreciate life more and now that I have more energy and better health with many of the symptoms I have lived with for years simply vanish - all I can say is get that "bloody hole plugged up as soon as possible". You won't regret it.

 

 


Posted By : CatMom5 - 4/27/2010 10:11 AM
I have had migraines my entire life. They started when I was a young child and at one point I was getting 3 - 4 migraines a week. I had my PFO/ASA closure done 2 years ago and I am quite happy to say that I have only had one migraine since and that was just after the closure procedure. I have gone 2 years migraine free!

Posted By : Mark in Denver - 5/31/2010 8:57 AM
To: No 1 Girly ...

You asked how I was doing after my February PFO closure - you were scheduled in April. First, I apologize for not following the thread of messages for awhile. I have felt so good that I have not thought about checking in often with this news group. The worse feeling I have experienced is some racing/fluttering of the heart. I suppose this is not normal but I have always thought it was part of the healing process (my personal opinion only). The surgeon has checked me out once and I'm due back after the six month period.

I am taking Plavix during the six month healing process. I bleed and bruise easily now. I will be glad when that medication can be discontinued. I have more energy than before. I have only had one sharp pain in (what felt like) my heart but it lasted only a second. I have had no discomfort as a result of the occuluder placed in the heart.

What device did your surgeon use? My surgeon chose the Amplatzer Cribriform Occluder - a very soft and pliable device. After August I will be off the Plavix and the regimen will then be an aspirin each day. I just got home from a weekend camping trip at a nearby reservoir. I carried tents, coolers, awnings, etc. without incident -- well, I'm getting older and "less pliable" but that has nothing to do with the PFO. smilewinkgrin

Mark in Denver

Posted By : mercyme - 6/1/2010 1:35 AM
 
 
   Hi, just read your post about PFO. I have daily chronic migraines. I have never thought about having any kind of heart problem as I've had no chest pains. I've dealt with migraines for over 20 years. I see a neurologist, but he only wants to add another drug everytime I see him.  Trying to get in to a headache clinic out in Houston Tx. I live in Tennessee but am willing to travel if they can help me.  I don't have as much energy as time goes by because of these daily migraines. I'm 47 years old, active and take care of myself.  Have had MRI, CAT Scans, EEG....but never had my heart checked. I would think I'd have some symptoms if it were PFO, don't you think?   Hope you are all doing well.
 
  God Bless,
 
  Mercyme

Posted By : MrsSgtSpikke - 5/31/2010 9:35 PM
Hi all. My name is Shara. I found out 3 days ago that I have a PFO. I have my first dr appt tomorrow. I have done lots of research on this since my dr's ma wouldn't answer any questions because, in her words, "I can't answer that, the dr left for the weekend". Well, thanks for letting me freak out over a long holiday weekend! Good thing I can do searches online to find my answers. I'm pretty sure that I will be fine, I have Tricare (military) and they seem to care. The only problem is, my husband is currently deployed and he is going to have to come home to help me. I just want to know how long do I need help around the house? We need to tell is command how long he needs emergency leave. I guess I'll find out tomorrow, maybe. It's just interesting to read about people who have ALL the same symtoms I have. I found out I had this after having an MRI because of headaches when I laugh too hard. They found a spot and then the "head" guy wanted another one done to check for MS. That came back fine. But, then he wanted to do the bubble study to check for the PFO, incase I had a stoke and didn't know it because of my migraines act like strokes. It came back possitive for that. Now, I go in to see what the next step is. I want to have the closer done, not the meds. I'm already taken too my pills a day, I don't want anymore. Wish us luck on my husband getting enough time to help me heal. :-)

Posted By : MrsSgtSpikke - 5/31/2010 9:37 PM
I forgot to say that I had no heart symptoms, just the head.

Posted By : BRUCO - 7/21/2010 3:47 PM
I WILL BE HEVING MY P F O CLOSED ON JULY 30th .
WHAT IS THE RECOVERY TIME BEFORE I GET BACK TO A NORMAL LIFE ?

Posted By : retread - 8/5/2010 3:17 PM
I had a transcatheter occlusion done in early November 2009. The Cath Lab Surgeon had a little trouble pushing the device through the PFO and I ended up with some fluid buildup around my lungs, so I had some serious chest pain for the first 12 hours and a splitting headache for three days postop. After that it was pretty clear sailing, a little of the "Chicken Bone" type of pain you hear of in this forum, but only if I were to lay down on my side with my arm compressing my chest. I also experienced a small amount of flutter but that went away within 3 months. After a brief no exercise or weight lifting period, I was downhill skiing at Christmas that year. I took Plavix and baby asprin for 3 months and now take only the baby asprin. The occluder was completly integrated into the heart by six months and apart from some follow up echos and EKGs (so normal that the techs wonder why I'm there), I have had no reason to see a doctor. My visual aura, occasional vertigo have gone completely. I used to get 10 migraines/month, some lasting for days; I've had five in the last two years. I get the occasional stress or tension headache but nothing like the brain busters I used to experience on a regular basis. No TIAs since the surgery either. More energy, stronger immune system better perception of life. For me this was the best thing to happen since I met my wife.

Posted By : Noah Body - 8/6/2010 8:20 AM
Had my PFO closed a week ago 7/30/10. I'm curious why no strenuous exercise is permitted? I've been laying low since the closure. I do walk, not run. Not to strenuous. Did walk off and on at the Ohio State Fair 4 days after closure in a period of 5 hours. If I did more strenuous exercise what does it affect? Will my device get dislodged? Will my sutures open up? So far I have not experienced any pain at all. Thanks

Posted By : Noah Body - 8/6/2010 9:51 PM
Found out from my doctor's nurse that the strenuous exercise restriction is for the sutures not to open up. The implanted device in the heart is not affected. It's all about the sutures in the groin.

Posted By : limon - 8/12/2010 10:39 AM
I had classic migraines for about 5 years (age 20-25).  For about the last 15 years (age 25-40) they have been diagnosed as "complex migraines".  The first time I had one with the numbness, I went to the emergency room, thinking I was having a stroke.  Back then the numbness only lasted about 10 minutes to a few hours with no other symptoms.  I will still look in the mirror and smile to make sure both sides are even.  I could go months without one and then get 2 in one month.  With each one they have lasted longer and longer.  And have been worse with more and more symptoms each time.  Today I get them about once every 4 months, but they last about 5-6 weeks.  It seems to go away a little and then come back in full force, so it could be I'm just getting them one after another for weeks?
 
My symptoms now are ...it starts with the aura.  Numbness in my fingers goes up to my face and head and then down my leg to my toes.  After the first day the pain starts, its an aching pain in my muscles followed by weakness.  It is always my right side, never the left.  There's pain in my joints also.  The headache is usually minimal, mostly just right side but sometimes both, but always feels different on each side.  I can move my arm and leg, it's just very numb.  The second day I am usually very nocuous, but only a few times have I ended up puking all night.  My last one lasted 6 weeks, but it could have just been many all in a row??
 
I have had MRI's and nothing.  I do have Patent foramen ovale (hole in my heart).  They originally thought this could be causing the migraines but since it's is limited to only the right side they don't think it has any thing to do with it.
 
If anyone has any information that could I help.  I would appreciate it very much!

Posted By : frenchanna - 9/13/2010 6:39 PM
Hi,

I'm 41 years old and had a 10 minutes TIA in July, when the ER discovered the PFO. I've also been suffering from migraine-headaches and "regular" headaches most of my life. I'm on 325 mg aspirin since the TIA and while the first cardiologist told me to wait and see if I have more TIAs before considering closure, the second opinion one strongly recommended it. Well, cardiologist #1 does not perform the procedure while #2 does...So, given all the skepticism and controversy about PFO closure, I'm trying to figure out if our US docs are over-killing it or if I should go ahead with it.

What do you guys think ?
Thanks :-)
Frenchanna

Posted By : PFO in Arvada - 9/16/2010 11:32 AM
My stroke happened in the middle of the night (March 28, 2010). My husband heard me "gurgling and coughing" and woke me to see if I was OK. As I sat up in bed I heard(felt?) a bang/bong in my head. When I tried to get up to walk, my entire left side was paralyzed. My husband carried me to the car and rushed me to the ER where they gave me the TPA intravenously. After several catscans, ultrasounds, and MRIs, they informed me that a clot (that I didn't know I had) travelled from my right calf up through a hole in my heart (PFO that I didn't know I had) and then hit the back right side of my brain. After lying flat on my back for 24 hours (due to the TPA, a major clot buster), I was released to go home. ... To make a long story short, after having the TEE, etc., I'm now getting ready to schedule my PFO closure (next month) with the same doctor who did "Mark in Denver's" closure. After reading his update, I am optimistic and not as fearful.
 
Mark in Denver, if you're still out there: Thanks so much!
 
My lingering questions have to do with the posts I've seen regarding vertigo/dizziness, etc. prior to either stroke and/or finding out about PFOs. In the months prior to my stroke, I experienced numerous severe episodes of what was at the time diagnosed as "positional vertigo" .... Never, at any time, did any doctor (and I saw at least three), suggest any connection to stroke and/or PFO! Even now, when I pose the question if there's any connection, I get no response!
 
Prior to the stroke, I did also experience "auras" from time to time (very infrequent), sometimes followed by a slight headache. To my knowledge, I've never had a migraine (although maybe that's what those aura episodes were ...). I've also experienced heart flutters or palpitations from time to time (also infrequent).
 
Because I had none of the usual risk factors associated with stroke, I'm just trying to figure out why the stroke happened (not just for my sake at age 62, but mostly to give my kids a clue!). At the time it happened, I was in arguably the best shape in my life (cardio, yoga, and/or Pilates) every day in addition to a 2-4 walk/jog daily.
 
Anyone have any confirmed answers on the connection between vertigo/dizziness/light headedness, etc. and stroke or PFO?
 
Thanks in advance! wink
 

Posted By : Shaun.is.all.fixed - 9/28/2010 3:17 AM
Hi my name is Shaun

I'd like to start by thanking Dr Nigel Wheeldon and all his staff @ Sheffield Northern General.
I'm 32 years old and i,ve just had a PFO closer 23/9/2010 after 18 months of finding it. The op would have happened earlier but I had to have a bad tooth removed,which is a major cause of infection so if you have any doubts get em out.

The reason i'm writing this blog is to try and let people know not every case is bad. Previous to my Op i've been living my life as normal except for taking regular 75mg asprin daily, I have been training twice a week and playing rugby league every Saturday, only with the odd flutter now and again, 60% of it was in my head anyway!

I have been out of hospital for 3 days now and apart from the strange feeling in my chest which I put down to it being fixed (beating normal) and the big black bruising on my groin and slight limp due to sliffness I feel ready to go back to work, I know I shouldn't.

I undersatnd that everyone has different cases and other complications, but I advise you not to listen to all the horror stories you read and hear, my hole was the size of a 2 pence peice and I am recovering fine, if I had read some of the stories on here I would probably not have turned up at the hospital.

Don't worry your in good hands! The doctors know what their doing.

Posted By : PFOtoo - 10/3/2010 12:00 PM
I have a question for those who have had PFO closure due to stroke(s). Have you had a stroke or TIA since having it closed? If you had migraines with aura prior to closure, do you still get them?

Posted By : war eagle - 11/3/2010 7:07 PM
Had a PFO Closure in 2009. Wondering what drugs others might still be taking after their closure?

Posted By : arewethereyet - 1/16/2011 11:25 AM
On June 15th I had a TIA. Suddenly could not speak. Went to the ER.........ended up in the perfect hospital that specialized in strokes.
 
They did a bubble echo which showed a PFO. Next day they did a endo which showed a ASD and surgery was preformed to place an occluder.
 
I have had migraines with aura since 13 yrs old or so, I am 49 now. They decreased in nature when I went thru early mentalpause (lol menapause) and I would only get aura, last an hour............but still bad to get in the middle of grocery shopping.
 
I went 5 months migraine free after he closure. I had NO ILL EFFECTS from having the pfo closure. I found that my sesitivity to smells has also decreased....
 
Then 2 wks ago I underwent a nerve ablation on my cervical spine due to severe neck pain caused by an auto ax 3 yrs ago. I have had this procedure before, and it relieved the pain and had no side affects.
 
But this time I have been having aura migraines since the day after the ablation.........As you can imagine I wish I never had it done, even though the neck pain is gone................I will take neck pain over not being able to see with aura hitting at will.
 
I have been online trying to find a relation to migraine and radiofrequency ablation, and can find not one thread.........only that ppl have this done to get RID of the migraines.
 
I would get the PFO closure again in a heartbeat........so glad I had it fixed before a full out stroke took place.

Posted By : arewethereyet - 1/16/2011 11:27 AM
war eagle said...
Had a PFO Closure in 2009. Wondering what drugs others might still be taking after their closure?
 
I was on plavix 75mg for 6 months then taken off. I am still on 81mg aspirin daily. other than that the cardiologist said I am Ok and do not need any addl meds

Posted By : Mr. Mellow - 1/17/2011 8:40 AM
I too had a recent PFO closure. I am having a little chest pin but my Super Surgeon said that is normal. It took about 3 weeks for my bruising and associated lumps to subside. I was most pleased with my doctor's staff and the caregivers at the hospital. Absolutely great people. I would do it again in a heartbeat (sorry).

Mine was discovered in 2008 and I was then scheduled for the closure. However, the neurosurgeon I was required to consult with, basically talked me out of the procedure, saying the risk was too great. Well, a TIA and mild heart attack later, it was completed. Hopefully a lifetime of migraines, waking up in the middle of the night with a pounding heart and chest the pain is over. I feel great and I can walk 18 holes without a heavy breath. I also think my mental health has improved as the anxiety about my heart is over.

It is amazing that after several military physicals, numerous flight physicals and work related examinations the PFO was never caught. But I also understand the ability to do so is fairly recent in the world of medicine.

I feel I am one of the lucky ones given a second chance at life.

Posted By : dancetoday - 2/17/2011 3:42 PM
I'm wondering if anyone had a PFO closure help migraine without aura?  All of the research I read was about doing it for migraine with aura.  I am 58, have not had a stroke or heart attack and am in pretty good health other than my migraines. The migraines are another story. Some months I have them more than half of the days, other months are "good" months and I only have them about 1/3 of the time.  So I started checking into the PFO issues. I went to a cardiologist, they did the bubble test, but it was "inconclusive."  I was a little disapointed that the ultrasound tech said she had an eye infection and couldn't see well so she had someone else do the IV.  It made me wonder if someone else who could see ok could have gotten a better ultrasound. They scheduled me for a TEE but I cancelled the appointment when I got something in the mail saying the co-pay would be over $600.  My neurologist said I can do it if I want to but said "I have no reason to think you have a PFO and if they find one they are going to want to close it."  SO heart surgery, even through a catheter isn't something I want to just try without just cause. So I am seeking information from people who benefitted from it who had migraine WITHOUT aura. Thanks. 

Posted By : Blind Faith - 2/26/2011 3:23 AM
Had a TIA six months ago and in for a PFO prodcedure tomorrow. Haven't had an episode since and never had a migraine in my life so sounds like I'm one of the more fortunate ones.

I've just one question regarding post op recovery and more specifically about how tender the groin area is left after the operation. Are you up and about quite quickly or do you hobble about for days/weeks after?

All info gratefullly received!

Posted By : rrasmus1 - 3/9/2011 6:46 PM
Hi, Everyone:
I am happy to have found this forum on pfo closure and recovery info. On the 3rd of March, 2011, I had this proceedure. I was in the hospital for a total of 5 hours and on my way home. In the OR I was given the option of either a sedative or a local block in the groin. (right side) I chose the latter because I wanted to watch the displays which the doctor's were viewing while they were inserting the catheters. The first one, ultra sound, went in quickly. The second, the closure device, kept getting stuck. You could watch in on the x-ray. Boing, boing, it finally made it to the heart. Believe me, the only thing I felt was the pressure on the vein going around the corner towards the upper chambers of the heart. It was fasinating to watch the opening of the closure device on both sides of the wall. They were really nice to give me a copy of the x-ray view for one heart beat showing the device open and in place. Cool!
Now, the purpose of this reply. Last October, 2010, I had had pain in my upper left chest which migrated about six inches to my upper left arm. Absolutely no pressure. Just a dull pain. At first I thought it was just some muscle pain because I had exercised heavily a couple of days before. But it wasn't the same. My family MD set me up quickly for a stress test. You know, running as fast as you can on a high incline tread mill and having nuclear medicine shoved into your vein. The very next day I had numbing of the nose and mouth area and more intense left side chest pain. A week later my whole face went numb. Both times these only lasted about 45 minutes. Of course this lead to MRI's, CAT scans, ultra sound, TIA, and TEE. The TEE showed a (severe) pfo.
The chest pains move back and forth across the chest but stay mainly on the left side. I am happy that I can get up in the morning and not have an immediate pain like it was before the closure. However, it will return, slowly. Yes, the intensity varies from day to day.
Should I expect this to stay with me from now on or will it subside over time?
By the way I have had no discomfort in the groin area at all.  thanks for your time.

Posted By : KMills1983 - 3/10/2011 9:54 AM
My name is Kim. I am a 27 year old mother of 2. In June of 2010, I was sitting at my desk at work experiencing some chest pains, shortness of breath, vision loss, and extreme drowsiness... along with elevated heart rate of 125. So I sent my boss an email, that for somereason she took really seriously.. all I said was " My chest hurts, I am having a hard time breathing, I want some asprin and to go home and take a nap" Within 30 seconds she and 10 others were at my desk. Fortunately for me, I work for a nursing home, and the DON checked me. Needless to say I was sent directly to the ER. I was admitted 6 hours later with swelling in my brain on the right side ( also the side my vision was blurred) I spent 2 days on the neurology floor, with heart rates soaring in the 150's +, finally they had to put me on oxygen because my O2 levels were only in the 80's.
 
At this point, I had had 3 MRI's, 2 CT scans, 2 spinal tap, and multiple blood draws! I was a living pin cushion. This was getting ridiculous. The primary physician I had at the hospital came in and explained that my EKG was normal, but he was overly concerned with how fast my heart was beating, and the low oxygen level. I was sent to ultrasound for the "bubble test" I saw the hole in my heart before the tech did. It was a 1 inch hole! Pretty massive.. how the danger was described to me was.. " you're like one of those athlete's that drop dead on the field" Less than 2 hours later I was in surgery to close the hole in my heart, at 26 years old.
 
In September of 2010, I started experiencing migraines. They started out every few days then progressed to everyday... then it lasted for 13 weeks straight. I saw a new neurologist, because quite frankly I did not care for the one at the hospital one bit. The new neurologist ran some test, I had another CT scan, and they found 2 small blood clots in the right side of my brain. SCORE!!! We found it! Now for the next 3 weeks I got 2 shots per week of blood thinners to dissolve the clots. That worked, but the blood thinners took their toll. Fortunately, my boyfriend took very good care of me during this. But even after the clots dissolved I am STILL having migraines, atleast 3 per week. I fight them and go to work everyday because I am a single mommy, and I have to do what I can.
 
So yet again, I switched to a new neruologist last week. Nothing has been done yet, all my medical records need to be sent over to his office.
 
So here are the symptoms I have now.... maybe some of you have some insight on what I can do..
 
I am having shortness of breath, tightness in my chest, chest pains, severe headaches, and elevated heart rates frequently...

Posted By : rrasmus1 - 3/10/2011 10:34 AM
To "Blind Faith": I hope all is well with you since your closure a few days ago. I know we are all different and we all have had different doctors who use slightly different methods for a pfo closure. Truly, the ONLY discomfort I had was removing the sticky bandage over the gauze covering the puncture holes in the groin. They could use these sticky bandages in place of Duck Tape and make a fortune!
As far as meds go, I'll be on Plavix for 3 months and 325 mg Aspirin for 6 months then no more.
I was up and about very quickly. Almost ran out of the hospital. Today, one week later, all is well except for the dull chest pains. I can live with that. All the best to you.

Posted By : Blind Faith - 3/27/2011 11:31 AM
So had the closure on Feb 28h and here's the deal.

Operation was a doddle though took longer than my consultant expected.....around 3hrs.

Zero pain in my groin area after. Felt like Superman but would have dramatic drops in energy levels.

Bruising came out 3 days later including internal bruising in my throat from endoscope hence often mentioned 'stuck chicken bone' sensation.

Went back to work 7 days later. Did an 18hr day charging around with laptop over my shoulder and put myself straight back into hospital with a tight chest and breathless that evening. LEARN FROM MY MISTAKE AND TAKE IT EASY!!!

4 weeks on. Still short of breath when I overdo it and bruise very, very easily as a result of the blood thinners.

Apart from that, it's all good!

Posted By : robb - 4/12/2011 6:16 AM
Hello, my name is Rob and Im 44 years old. I have had migraines with aura since I was 14. The symptoms are first the aura (flashing light show) then the numbness on left side(always) followed by vommiting. Then the headache hits within the hour followed by confusion, loss of motor skills and slurred speach(sometimes not slurred just babble). Some have been so bad my Dr. ordered MRI to see if it was actually a stroke. I have been diagnosed with PFO and I am scheduled for closure May 5th at Oklahoma Heart Hospital in OKC. I am both excited and scared to have this done. I cant imagine a life without migraines. But at the same time Its a little scary knowing I'll have this patch in my heart the rest of my life. Reading all the great info here has helped me feel better about the procedure. I will take off work 3 weeks because my job requires heavy lifting.  No working out or exercise for a month.
 
Ive read that some experience an increase in energy and overall better feeling after recovering from PFO closure. I really hope thats the case with me! I will be back after surgery to let everyone know how it goes. Wish me luck.   Rob
 
 

Posted By : gardengirl - 5/10/2011 9:31 PM
I have just been diagnosed with PFO after a "small stroke" very different ideas from different Dr's... Freodertdt Medical is doing a study on either closure of the PFO or Medicine therapy..not sure what to do .. 46 ..history of mild migraines mild stroke on 4/21/11 very confused..going for another opinion as soon as I can get an appt. with a Dr not at the Medical College Hosp. where they are doing a study on closure or medicine therapy. All the posts have been great info ...really makes you think. I have alot of homework to do !! :) Any and all comments are welcome...this has been a very scary few weeks...never had any problem till now.

Posted By : tf - 5/15/2011 6:33 PM
had a stroke with no lingering affects in march. lots of tests found a hole in my heart. recommended to dr. sorensen in slc, ut.
more tests confirmed hole. scheduled surgery in a short two days. into hospital, surgery, overnite and home the next day by 11am. pain = 0 groin pain = 1 energy = 7 bruising = 2 this was so easy for me. had a great team work on me. dr. had a 25mm hole himself. my hole was 30mm.

me = 56yr male. active = ski, mtn bike, road bike, golf, camp, kayak, sup etc. no migrains, no other problems before stroke.

final score = very pleased with procedure and outcome so far. only been 3 days but so far so good.

Posted By : phoenixmom - 5/17/2011 3:10 PM
I had a TIA about 8 years ago at age 43 (total numbness in my left arm and hand that lasted about 5 hours). Did all the tests, including a TEE. Everything came back normal. In October of last year, I had a significant stroke that affected my entire right side. I am still numb/heavy on my right side and some short term memory loss, but am thankful to have full use of everything. Was in the hosptial for 4 days and they repeated the TEE. Again, it showed nothing. I am very healthy and not overweight so they told me I just fall into the small % of people that a stroke occurs for no reason. I went to Mayo, in Phoenix, for another opinion. The neurologist reviewed the tests that had been done in October and didn't think the TEE showed enough, so he had it repeated. This time, the TEE showed that I did indeed have a PFO. Had a closure done this past Friday at Mayo. Other than bruising in the groin, I feel great. Be sure to get second opinions if you aren't getting any answers.

Posted By : romi - 5/26/2011 9:21 AM
I,m a relative of a florida patient , said pt,went thru a transhepatic closure of a pfo , in the process the surgeon lacerated the liver and patient died of internal bleeding , make sure you are in a very good institution and a very good interventional cardiologist,,,,,,good luck to all, remember they all will tell you they done it many times before ,,,!!

Posted By : robb - 6/8/2011 8:40 AM
Hello, my name is Rob. I had the PFO closure done 5-4-11 at Oklahoma Heart Hospital in OKC. I felt great first couple weeks after except for 2 migraines. First one was bad! Exactly one week after surgery. Really got me depressed. The second was not as bad. After two weeks I started walking around block. Noticed I was weak, shaky and dizzy. I didnt think much about it I just thought I was just out of shape. Well went back to work three weeks after surgery. Wound up in ER with high pulse rate, sweating, dizzy, weak and felt a cramping in chest. I work at Mercy hospital so they took me right in. Ran alot of tests and said I had low blood plasma due to dehydration. My pulse was going from 60s laying down to 120s standing. Went back to work next couple days with no problems (didnt do much). Went fishing saturday and had another episode. Same symptoms as before. The guys I was with said I was as white as a sheet. My pulse rate was 135 while sitting in boat. Couldnt make it back to truck before having to vomit! My surgen has me wearing a chest monitor for next couple weeks to try to find out what is goin on. Thinks I may have developed an arrythmia from surgery? My pulse rate was over 130 on the drive in this morning. It has my family really scared. Im sure they will figure it out but I was just wondering if anyone else has had these problems? Im 45yo male that was running 6 miles a week and working out 6 days a week(migraines permitting)before the surgery. Now I cant fold laundry without my heart rate going over 120 and having to sit down. Very frustrating! Thanks Rob
 
ps Love this site. If not for this site I dont think I would have had the surgery!!

Posted By : K$ - 6/9/2011 8:18 PM
Just had the PFO closure on May 20 after suffering from Migraine with aura for the past 11 years. Starting in 2005 my migraines became very severe if I was unable to stop them right at the onset, numbness in my left hand/arm, partial vision and garbled speech. When this first severe migraine occurred it actually left scarring on my brain that showed up on the MRI and I had lingering effects for months, tingling in my extremities, difficulty recalling words. After 6 months the scarring was gone and all lingering effects disappeared. I've been on Inderal for the migraines which has done a great job of controlling them over the years and I take Excedrine migraine as soon as I get the slightest feeling of a migraine coming on. Recently this began to be less effective at controlling my migraines, I had another severe migraine with stroke like symptoms in February and another in March. I've also been completely exhausted since December no matter how much sleep I got. I even found myself almost passing out while doing yoga. I saw a new neurologist who scheduled me for every test under the sun including a TEE. The neurologist thought my heart would be fine as I had no murmur or irregular beat and live a very active life, running, swimming, yoga etc. The TEE test showed I had a hole in my heart. I was pretty shocked. I saw a great cardiologist my neurologist recommended that has treated other patients of hers with the same symptoms. The cardiologist highly recommended closure of the PFO. I decided to go for it as my quality of life was extremely degraded at this point and he said the chances of having a full stroke was great.
The surgery went very well and I was home the next day. My groin area was sore the first two weeks, but feels normal now. 3-4 days after the surgery I started to get burning headaches that initially started around 10 am and lasted until 3 pm. I drank water constantly to make sure I was hydrated and slept a lot. After a week the headaches diminished and are completely gone now. At the beginning of the second week after surgery I started getting heart palpitations. I called the Dr and was told as long as I had no other symptoms this was normal as the heart heals. The palpitations have gotten less and less every day. Two weeks after the surgery I had a tremendous surge in energy and had to try to hold myself back from doing too much. I hadn't felt that good in years. Then starting this week I felt really tired again and had a dizzy spell sitting at my desk while having heart palpitations. I checked my blood pressure and it was really low. I talked to the Dr and he took me off the Inderal today. I was taking 20 mg of inderal as prescribed by my neurologist and then started 75 mg plavix and 325 mg aspirin a day following the surgery. This evidently took it's toll on my blood pressure. I'm hopeful stopping the inderal will get my BP back up and I'll feel that awesome energy level long term.
This site was extremely helpful in helping me make the decision to have the PFO closed and prepare for the procedure and recovery. I ended up taking two weeks off from work and really needed the full two weeks.

Posted By : YvetteB - 6/28/2011 6:46 AM
Hey... After two "mild" strokes/T I A's in three days, a echo was done. First, I didn't find out about the PFO until almost a week later when I mentioned to my primary doctor I never heard from the cardiologist. He looked at my results from the emergency room and said "oh oh". He proceeded to tell me I had a PFO and that it was probably nothing but he was going to send me to a cardiologist "just in case". By the way, the ER doctor put me on Bystolic and a children's aspirin every day. Blood pressure was 210/101 when they finally called me back to the ER. I saw the cardiologist today and he said "the hole is small and 1 out of 4 people have this condition". He put me on an additional BP medicine and told me to come back in 4 weeks. He said "his first course of action is to see if the aspirin works before he does the closure". Now is it just me or is he playing with my life? Especially since I've already had 2 TIA's. Help!!!

Posted By : sugarmagnolia548 - 7/15/2011 10:53 AM
I just had this done 3 days ago and I would do it again any day! This was nothing to be scared of!!! If your doctor does the TEE and it goes smoothly, I would think that the same will go for the PFO closure. Mine went off without a hitch, the only thing that happened was I sprung a leak from my groin area when they were about to let me go home. I was on Plavix and 325mg of Aspirin before the surgery so my blood was extremely thin! They just patched me up and kept me overnight and I haven't really had any pain. I have been waking up with mild headaches every day, which I am hoping will go away when the heart starts closing over the patch.

I slept pretty much straight for 2 days...but yesterday I hung around the house all day and did laundry and cleaned. I even walked my dog (and ran for a little bit). I know I probably shouldn't have but I feel so great and I just needed to use up a little energy.

Before the procedure, I never had a migraine with "aura"...just migraines several times a week. I have always complained to my doctors about being extremely fatigued..I could literally sleep anytime, anywhere. I have often taken naps in my car in between classes because I just couldn't stay awake (thank goodness for my subaru, just like a little bed back there)

Has anyone else noticed an increase of energy after the closure? And how long did it take?

Posted By : sugarmagnolia548 - 7/15/2011 10:53 AM
I just had this done 3 days ago and I would do it again any day! This was nothing to be scared of!!! If your doctor does the TEE and it goes smoothly, I would think that the same will go for the PFO closure. Mine went off without a hitch, the only thing that happened was I sprung a leak from my groin area when they were about to let me go home. I was on Plavix and 325mg of Aspirin before the surgery so my blood was extremely thin! They just patched me up and kept me overnight and I haven't really had any pain. I have been waking up with mild headaches every day, which I am hoping will go away when the heart starts closing over the patch.

I slept pretty much straight for 2 days...but yesterday I hung around the house all day and did laundry and cleaned. I even walked my dog (and ran for a little bit). I know I probably shouldn't have but I feel so great and I just needed to use up a little energy.

Before the procedure, I never had a migraine with "aura"...just migraines several times a week. I have always complained to my doctors about being extremely fatigued..I could literally sleep anytime, anywhere. I have often taken naps in my car in between classes because I just couldn't stay awake (thank goodness for my subaru, just like a little bed back there)

Has anyone else noticed an increase of energy after the closure? And how long did it take?

Posted By : Mark in Denver - 8/27/2011 9:58 AM
To:  PFO in Arvada (and everyone else) -
 
I just read your post this morning.  I hope your procedure with Dr. Ruby went as well as mine.  As you may recall, I had a PFO clousure in February 2010.  I really had no issues with the procedure and a year and a half later cannot even tell that there was ever anything wrong.  I read where you had some minor heart fluttering ... I have too both before and after the procedure.  Dr. Rubinstein put me on a beta blocker that solved that problem and all is well.
 
I no longer take Plavix - only one aspirin a day.  At one year after the surgery, I had a echo cardiogram (with bubbles) and found that the PFO is completely closed now.  I am very happy for the results I got and very grateful to Dr. Rubinstein for his skills with performing the procedure and his post procedure care.  For anyone needing this procedure, I would recommend doing it.
 
I hope everyone finds their way gack to good health like I did.
 
Mark in Denver
:-)  

Posted By : Tina1962 - 8/31/2011 10:35 PM
I am reading now, as I should be in bed..I am having my PFO closure done in the morning. I have expectations of this pain in my chest and the shortness of breath going away!!!!! I went from a training body builder 18 months ago, to a tired old feeling body. I can't even remember what it is like to not be short of breath and tired all the time. I am hoping to post that all went well and that I am feeling great....................................


to be continued................................ smurf

Posted By : Vickster29 - Today 10:55 AM
I had my PFO closure in 2009 my symptoms were extreme headaches that put me down for 3 to 4 days at a time but I had a headache EVERYDAY I had the Aura, the flashing bubbles I would have slurred speach, I would forget what I was saying midsentence, forget where I was going, this was all after 3yrs of being treated for migraines I KNEW SOMETHING else was wrong so I went to a new doc, and he sent me to get the doppler test and they were AMAZED there were so many bubbles we couldn't even count them....So they sent me RIGHT away to Dr. Sorensen the Guru of PFO closures LOL... with all the testing they did a closure right away I had many mini strokes the Doc said that my hole was the biggest he had closed other than his own and obviously he didn't close his own tongue I felt all of what everyone has felt on these blogs  I went 1yr NO HEADACHE it was heaven I forgot what it was like without a headache... but for the last year I have my headaches back  cry I am being checked all over again for EVERYTHING just had an MRI yesterday of my brain and cervical spine, have not went back to the cardiologist, that will be my next step I will try to update and let ya'll know if it has anything to do with the closure Blessings to all of you and I recommend the closure even if it's a year of relief yeah God Bless!!     Vicky

Posted By : Gurglingmonk - 11/7/2011 7:55 AM
I am a 34 year old male and had a PFO closure on 10/10/2011, it was discovered after two TIA's and complaints of headaches as well as dizziness. The procedure went well, it lasted about 2 hours and since i was under sedation it was moderately painless i was put on Plavix and aspiring for 6 months. The recovery has been going well with some minor setbacks, two weeks after the procedure i had to go to the emergency room with tachycardia and arrhythmia. This was somewhat depressing for me since i was recouperating so well and was looking forward to start jogging and getting back into my routine. Now i can't sleep laying flat in the bed becuase after 3 minutes of laying down i start getting arrhythmias, i have to put a pillow against the backboard and sleep with my back againts the backboard. The doctor has since put me on Inderal (propanolol) and had a monitor install which i drop off today.
 
has anyone experience tachycardia and arrhythmia after having the PFO closure? If so do they go away?
 
Thank you so much to everyone the inputs and comments on this site really sooth and help those of us who have gone throught or are getting ready to have the procedure done.
 
 

Posted By : sldeavor - 11/29/2011 4:57 PM
I am 41 yrs old and I have know about my pfo since birth. I have been followed by a cardiologist since I was 6mths old. Not only do I have the pfo, I have a bicusbid aortic valvue. I have had unexplained miagraines for many years, bouts of high blood pressure, tingling in face, among many other symptoms. Just 2 weeks ago I had a spell where I could not process what anyone was telling me. I was seen by my GP who referred me to my Cardiologist and next week I will be having my pfo closed. I have severe anxiety. He will doing a TEE along with the closure so I will be placed under general anesthesia but the anxiety is still here. So scared. Reading all the posts have really helped. I hope I feel as good as everyone here once I totally heal from the procedure.

Posted By : Scooby-do - 12/13/2011 10:03 AM
Just joined today as I've just gone thru quite a bit.
Had a simple knee procedure at the end of Oct 2011, I'm 38, female marathoner experiencing some knee pain, so wanted to get it fixed. 48 hours later I had a heart attack, went into cardiac arrest luckily in the presence of the LAFD, CPR shocked 8 times, into ER shocked 3 more times, moved to ICU once I was stable, then transferred to Kaiser Sunset ICU 24 hrs later.

As it turns out a clot moved from my leg, to my lung, to the heart, thru the PFO I didn't know I had, to the brain causing a stroke. Two weeks in ICU, various tests, on heparin, then warfarin to get my levels up before I could leave.

I'm on warfarin for 3 months, while the haematologist is running 10 different blood tests to find out if I have a blood disorder. Haematologist might keep me on for 6 months, to be discussed at the end of January.

No heart damage, but back at the end of January to discuss whether or not we close the PFO, there is also the chance it could be too small to close.

Seeing the neurologist at the end of this month. The thought of closure and no longer having migraines is a wonderful option, as I've been having them with Auras since I was 16.

Concerns? Yes, the thought of another surgery kinda worries me. Would like to know if anyone else is with Kaiser for one, if there is a doctor in Kaiser that someone can recommend. I know they have a whole team discussing me, and I have a heart surgeon friend at St. John's in Santa Monica who I can talk to as a second opinion, but still overwhelming.

Is this a surgery that should happen quickly, or can I take some time.

I'm back at work part time, but if I do this procedure, how long would I be off work, when can I fly etc.

If anyone has any advice/guidance, I'd really appreciate it. Thank you so much.

Posted By : Jazzy12 - 1/22/2012 4:30 PM
I had single bypass surgery on 6-20-11 at the age of 54.  Which was a complete shock to me and everyone I know because I eat right and exercise.  Then in Nov. 2011 I  had an aura and confusion and was told by my doctor's office to go to the ER.  They diagnosed me with a TIA and the nuerologist did a bubble echo and said I had a PFO.  I had had similar episodes since my twenties, usually 4 or 5 per year, but was once told that nothing was wrong with me, so I always considered them to be migraines.  I had the PFO closed on 11-30-11 and wish I hadn't.  I have had at least one TIA or Migraine per week since the closure.  The cardiologist keeps saying that I can expect them for 3 to 6 months after the procedure.  The nuerologist is trying to figure out whether they are TIAs or Migraines and why I'm having more now than before.  I'm going to another cardiologist next week for a second opinion.  Has anyone else had more problems after the PFO closure than before?

Posted By : RC888 - 2/12/2012 6:01 AM
Just wanted to share with everyone-
Im a 36 yr old female pretty active & some what healthy. On July 29, 2011 i had a full blown ischemic cerebellar stroke, i was immediately prescribed 3mg of coumadin. after one month of aggressive physical therapy and acupuncture For paralysis on the right side i was given the green light to fly to LA Ceddars Sinai for indepth research as to why I had a stroke.
While under going blood work and tests the neurologists and cardiologists confirmed I had a stroke from taking "oral birth control" pills and to top it off I had a PFO and I was protein S deficient.
With the grace of God there just happened to be an available slot open for the procedure and although I was scared, I did not want to experience a 2nd stroke.
On September 12, 2011 the procedure to close the PFO was done by dr. Kar. All went well, I believe recovery for everyone is different, the first 3 months I experienced headaches, migraines, weakness, difficulty breathing at times and heaviness in chest not life threatening just uncomfortable at times.
It is now February 11, 2012, 5 months post surgery and I feel much stronger and the migraines have lessened once we identified contributing factors to include certain foods ie, chocolate caffeine cheese MSG weather and other triggers. I walk daily for excercise, however when I go up hills I do experience slight difficulty breathing.
I'm still on 75mg of plavix for 3 more months and 325mg of aspirin.
In closing I like many others are on the road to recovery. I have no regrets of having the surgery and I am grateful i was given a 2nd chance.
With God, my husband children parents family and friends by my side I'm able to focus on getting 100% back to normal so i could help others in need.
Thanks for allowing me to share and please feel free to contact me.
God bless.

Posted By : montanajoe - 2/20/2012 7:59 PM
Hi rc888, i hope all is well with you. I read your story and I would like to share info with you. IM A 47 year old male and I just had a PFO closure on jan 10 2012. My only symptom of the PFO has been difficulty breathing during exertion. This started in 1995 and i started see doctors in 2001. The PFO was not found till Nov. 2011. I believe it about 5 months since your procedure, i was wondering how you feel. For me its been 45 days. My PFO is not yet fully closed. My O2 levels still fall into low 80s during exertion. heart rate still elavated ( low 100s ). Still having difficulty breathing. Past few days I have heaviness in chest, discomfort in chest and fluttering in chest. Just wondering if you started to feel better, when you started to feel better. please let me know.

Posted By : montanajoe - 2/26/2012 3:37 PM
To all, its been 46 days since my procedure and i want all to know that chest pain, chest discomfort and fluttering has stopped for now. O2 levels now falling into mid to high 80s after walking up stairs. heart rate is starting to drop to mid 60s to high 70s at rest and 100 to 125 during exertion. still having difficulty breathing during exertion, but seems to be getting better.

Posted By : Sanja123456 - 3/2/2012 7:39 AM
I am a 34 year old mother of four who just had an ASD closure on 2/22/12. I have always been very active, I even have a black belt in jujitsu. As far as I can remember I have always had weird heart beats a couple times a year, thought nothing of it, I even carried my twins full term while on 4 months of bed rest and terbutaline. On Sept 24 2010 things got really weird, I bent down to tie my sons sneakers and went into AFib. I went to the emergency room with a heart rate of 160, no meds got it down so I needed to be cardioverted. In the next year and half my cardiologist performed a stress echo (normal) a bubble study (normal). My symptoms in this year and a half were getting progressively worse, palputations, chest cramps, yawning all day long, increased heart rate and chest pressure. I went back to my cardiologist and demanded a echo, she sent me to get one, then she called with the results and said that everything looks ok but that my right side is slightly enlarged and that I must have an athletes heart???? I knew it was more than that, went to a specialist in NYC, she ordered a cardio MRI to get all the details on my heart, sure enough I had a moderate to large ASD (size was between a nickel and quarter)! Just had my surgery with a cardiovascular sergeuon who has performed over 3,000 closures at Colombia in NYC. I am on Plavix for 3 mos, aspirin for 6 mos and a beta blocker for 1 mo ( to control my rate). My breathing improved dramatically, buy I still feel all of the chest pressures and some upper back pain. I just want to feel normal again! How long before I get some relief? When will the right side of my heart start to shrink? Thanks!

Posted By : montanajoe - 3/2/2012 12:42 PM
hi sanja123456, did you have surgery or a device installed through your groin? do you have an elevated heart rate since surgery?

Posted By : Sanja123456 - 3/2/2012 12:56 PM
I had the device put in. My heart rate was high for the past year... And it continues to be high, but they put me on beta blockers. The doc said it should go down when my right side of the heart begins to shrink back to normal.

Posted By : montanajoe - 3/3/2012 12:52 AM
I never had a elevated heart rate. Since my procedure it is running high. Seems to be getting better at rest but still high during exertion. 100 to 130. My only sympton of the pfo was shortness of breath. Its been 53 days for me and am still getting short of breath, mostly when i walk upstairs. I am glad you are breathing better. I have not had any chest pain for 2 weeks now. The doctor did tell u your heart would shrink back? Did you get short of breath before procedure. If so at rest or exertion?

Posted By : Sanja123456 - 3/3/2012 8:27 AM
The right side of my heart has been enlarged for some time now because of the shunt caused by the ASD. My said my heart rate problems should resolve when the right ventricle starts to sharing now that the hole is closed. The one thing I learned is that everyone's situation is very different. Try to give it more time sometimes these things resolve with time. Glad to gear the chest pressure is gone. I did get shortness of breath at exertion before the procedure, again my doc attributes this to the enlargement of the right ventricle, it's double the left.

Posted By : DWelz - 3/8/2012 7:48 AM
Hi! i am a 36 years old woman, having closure of POF on february 2011, before the closure I have shortness of breath during exertion since I had a liver stroke 4 years ago. Before that I used to practice sport ( Aikido, capoeira, swimming ) with no problem.

After the closure I felt shortness of breath, pain and chest pressure during exertion for almost 3 months after closure, chest pressure when flying (that I still feel), and palpitations and a kind of arritmia that disappered one month after the closure.

Then I have no symptoms so I start practicing sport 6 months after closure, and with that, shortness of breath and pain came again. Cardiologist told me that he has never had a patient with this symptoms, so that they Would be due to other causes not the heart, and he suggest me to continue making sport. On november 2011 I had a very intense heart pain while running, and from then, shortness of breath, pain and pressure during minimun exertion again.

So, I had to stop practicing sport because I couldn't go up the stairs of my house without pain. The cardiologist says that the amplatzer is in his place, and a little shunt appear again.

Now I am much better again, (3 months and half after the pain while running) I can walk and go up stairs with no problem, but I have not start practicing sport.
I read a doctor saying to wait almost one year to practice sport.

The only thing I continue feeling is the chest pressure while flying, does someone feels the same?

Thank you!

Posted By : montanajoe - 3/8/2012 6:59 PM
hi dwelz hope all is well when you r not flying. i had my closer on jan. 10 2012 and i flew to florida on feb. 06 2012 and i had no pain at all. since the closer ( just 2 months now ) i only had chest pain, palpitations the week of feb 13 2012 - feb 17 2012. none since. my pfo is just half way closed. i had tee on feb 20 2012. still have shortness of breath, sometimes feel worse then before closer. how long before your shortness of breath went away or got better. plesse let me know

Posted By : montanajoe - 4/11/2012 7:23 PM
Hi to all just have an update to my pfo closure. its been 3 months and im just starting to feel better. My breathing seems to be getting better at exertion ( walking up stairs ). heart rate seems to be fallen too.

Posted By : rrasmus1 - 4/18/2012 11:47 PM
I would like to give you all an update since my pfo closure on March 3, 2011. Today's date is: 18 April 2012.
For the first 10 days after the procedure I felt great. Actually, I felt pretty well before the closure. On March 13, ten days after the closure I experienced extreme heart palpitations. I was given a sheet of the possible side effects, from the doctors nurse, before I was sent home. It did mention the possibility of heart palpitations and the possible length of time to expect them. It said 1 to 2 months. When they first hit I was a little frightened because I had never had anything like that before. Even the sleightest exertion and off they would go.Sort of like a horse race. I still maintained the Plavix and Aspirin regiment for the required 6 months then I stopped. The palpitations did go on for a little more than 2 months. Yes, at first they were quite severe but over time they did diminish and about 6 months ago they stopped all together. I am trying to exercise by taking long walks at least 30 minutes or more a day. I did try the walk/run concept for a while but I would experience a palpitation or two. So, for now, it's just walking. Hopefully, one day soon I can get back to at least some jogging.
One thing I noticed, right after the closure, I could feel my pulse in my feet. I don't remember ever feeling that before. Plus, I have a strong pulse. When I am lying down I feel it in my ears. When at rest my pulse is around 60 bpm.
Thanks for all your posts. Another place you may find some helpful information is at: EarthClinic.com.

Posted By : montanajoe - 4/19/2012 6:24 PM
hi rrasmus 1. its been 13 months since your closure. just wondering how you feel overall. Did you have shortness of breath before closure and if so is it better. Has your pfo closed all the way? if so how long did it take? Its been 3.5 months for me and my 02 levels still fallen into mid 80's during exertion. But im starting to feel better overall. please let me know. thanks montanajoe

Posted By : rrasmus1 - 4/19/2012 8:23 PM
Hi, Montanajoe:
Overall I feel great! Did I have any shortness of breath before the closure? No. I did somewhat after, however. At this time I have no problem with that. Has my pfo closed all the way? After the appliance was installed the doctor did a  bubble test on the spot. No bubbles. I never did have my 02 levels checked except in the recovery room. It was good then. Happy you are beginning to feel better. Did you have any palpitations following your closure? Just curious. Thanks for the reply.

Posted By : montanajoe - 4/20/2012 4:35 PM
Hi rrasmus1, I had palpitations for a few days after the closure then they stopped. then I flew to florida on feb 6 2012 felt fine except for shortness of breath. then on feb 14 2012 I flew home and I had chest pain and papitations for one week straight. then they stopped and have not had one since. I just want my breathing to get better. my heart rate is just now { 3.5 months later} starting to go back to normal. 60's to 70's bpm. thanks for info its a big help knowing what to expect. By the way what was your main symptom from the pfo. mine was shortness of breath at exertion only. no other symptoms at all.

Posted By : DWelz - 4/26/2012 3:01 PM
Hi Montanajoe! Sorry for the delay of my answer, I fell quite well when I not flying or traveling by bus or train. I have been flying this month, and felling preasure and pain specially when landind, the pain starts just when something changes in the cabine pressure. But if I am not traveling I fell better everyday. I can go up one floor stairs without shortness of breath or pain, and I am walking for 1 hour, slowly, 4 days a week. Glad you feel better!

Posted By : montanajoe - 4/26/2012 3:12 PM
hi dwelz, what was total time before breating started to grt better? im at 3.5 months and breating still not good.

Posted By : DWelz - 4/26/2012 4:39 PM
Hi montanajoe! Dont worry, for me it was 4 months to start having days without shortnbreatness, 1 day good, other bad, then a week good and some days bad, then 2weeks fine...6 months after the closure i had more good days than bad, now (more than one year after the closure, but almost six after it brokes a little) I am having almost all days without short of breathness, but if i do more than ususal i fell it. For example, 2 months ago i couldnt carry any shoping bag (nothing, I had to go out home only with the keys and the credit card because i couldnt wear a bag with wallet....now i can wear my bag, and i can go shopping carring 2-3 kg with no short of breath, but if I try a suitcase...it appears, any way, I think it is a long way to close it properly, and we have to give time with no efford situations to let our body to cover the amplatzer completly, if there is any part not well epitelizated there is some blood mix that makes us to feel the shortness of breathing. So steep by steep and celebrting the small things we can do better every week!

Posted By : DWelz - 4/26/2012 4:39 PM
Hi montanajoe! Dont worry, for me it was 4 months to start having days without shortnbreatness, 1 day good, other bad, then a week good and some days bad, then 2weeks fine...6 months after the closure i had more good days than bad, now (more than one year after the closure, but almost six after it brokes a little) I am having almost all days without short of breathness, but if i do more than ususal i fell it. For example, 2 months ago i couldnt carry any shoping bag (nothing, I had to go out home only with the keys and the credit card because i couldnt wear a bag with wallet....now i can wear my bag, and i can go shopping carring 2-3 kg with no short of breath, but if I try a suitcase...it appears, any way, I think it is a long way to close it properly, and we have to give time with no efford situations to let our body to cover the amplatzer completly, if there is any part not well epitelizated there is some blood mix that makes us to feel the shortness of breathing. So steep by steep and celebrting the small things we can do better every week!

Posted By : montanajoe - 4/26/2012 5:59 PM
Thanks dwelz, That makes me feel good. Without this web site I would have believed that the procedure did not work. Doctors told me that I would feel better the next day. Then it was with in 3 months. With all the info from this site I know it will take one year. THANK YOU for the feed back. please keep posting. Hope you feel great very soon.

Posted By : montanajoe - 5/16/2012 5:05 PM
HI SANJA123456, i see its all most 3 months since your closure. Just wondering how u r doing. Has your breathing improved yet? im just over 4 months and i just went through 2 weeks of chest pain and very bad shortness of breath. totay is 4 months and 6 days and i fell good, no chest pain and breathing better but not great.

Posted By : RC888 - 6/16/2012 12:11 AM
Montanajoe

I apologize for the delay in responding, 9 mths post closure and everything seems to feel better heavy breathing after exertion has subsided, migraines still come and go. Just 2 wks ago cardiologist informed me pfo was not sealed completely praying for closure by december 2012.

Hope your 5 mth recovery has improved tremendously wishing you all the best. I recommend you take it easy for 6 mths as everyone's recovery is quite different.

God bless

Posted By : montanajoe - 6/16/2012 10:43 PM
hi rc888, thanks for the feed back and wish you total recovery. im in my 5th month as you said and im feeling good at rest at times, but still getting short of breath during exertion. mostly when i walk upstairs or up hills. i have my sixth month check up on july 12. i know i will be told that my pfo is still not closed. thanks to this web site i know it wont be for one year to one and a half years for total recovery it its going to happen. just think i was told i would feel great right after the procedure. I hope these doctors start reading this web site and see that a pfo closure takes time, a long time. I will let you know how my july 12 check up goes. Im going to have an echo and bubble study during exertion to start.

Posted By : brittanyrob - 8/30/2012 10:02 PM
Hi. I am 27 yrs old and was just diagnosed with a pfo. My primary care doctor gave me the diagnosis after sending me to have a bubble echo done, which is when they discovered the pfo . She says that she thinks I need it fixed for sure but I can't get into the cardiologist for 3 weeks. I have been having horrible migraines and nothing helps. They put me on a preventitive medication but it hasn't done anything. Does anyone have anything that has helped them? I am so terrified of having a stroke or something happening before I get the surgery. How long did it take others between diagnosis and surgery? Now that I know what could happen with my pfo I am afraid of everything happening.... any advice for me?

Posted By : kuku - 9/28/2012 6:19 AM
I am a 56 year old male. I live in Canada. For most of my life I have been involved in Himalayan Climbing both professionally and as a hobby for almost 45 years. So I consider myself fairly active and fit. in 2011 Jan while having dinner with my friends I heard a pinging sound in my ears after which I lost thread to my conversation. I sat down on the chair behind me. I was very confused and was babling and lost sensation in my arms. I was very tired and wanted sleep. I was taken to the local hospital where after series of tests found nothing and I was discharged. Few days later I felt very agitated and was very uncomfortable and returned to the emergency. This time I stayed for a few days and more tests were conducted. MRI showed I had a stroke and TEE showed I had a PFO. I was put on Plavix, Ramipril and Liptor. I returned home and started to resume normal life. It took almost a month for me start feeling myself. In between I saw the neurologist who added a daily dose of baby Asprin. However I started getting painful bruises on my legs. So at my next appointment with the neurologist in April they kept me on Plavix but removed the Baby Asprin which ended the brusing. At this meeting the neurologist discussed my options, living fairly normal life with medication or possibilities of a PFO closure. I also asked asked if continuing my climbing would be a problem as I was booked to lead a high altitude walking expedition for ten people that summer in the Himalayas. He didnot think that that would a problem as long I took all prescribed medication. I was recommended to see a cardiologist in Agust for the PFO closure. In July I was in the Himalayas for a month and led a successful expedition in the Ladakh region and was above the heights of 16000 feet and reached upto 18000 feet. I never felt better and felt very fit. Long days of walking and crossing many high passes I felt fine. In August I met the cardiologist who recommended the PFO closure. I was lucky to be called in early Dec 2011 for the procedure. I was put back on Baby Asprin. Understandably I was apprehensive about that. The procedure was flawless and fairly quick and I felt great after that. Then problems started as I started to bleed in my groin. It was decided to keep me overnight. The nurses called me the "oozer". I bled the whole night. They finally controlled the bleeding next day and kept me on Plavix but removed the Asprin. Seems Asprin and Plavix together donot work for me. I returned home with pain in the groin. Few painful days but the healing was fast. Then started the chicken bone syndrome and fluttering heart and plapatations and sometime racing heart. Very uncomfortable and worrisome. I was checked and was asked to monitor it. Holter monitor was also used to monitor my 24 hour heart rhythm. Around ten days later it all settled down. Once again I was monitored with the Holter Monitor. I have resumed my normal life. In April 2012 I was taken off the Plavix. In June I was back in the Himalayas for a intense high altitude drive trip with some walking. I didnot push myself but I felt great. Hopefully next year I can resume my normal style of Himalyan activities.
Thanks for all the posts in this blog. They helped answer many questions.

Posted By : Starheartpoint - 2/27/2013 11:48 AM
I am 29 years old (female), 2 kids. I have been experiencing extreme migraines for the past year, before that I had only migraines during preganacy. about 7 years ago (age 22) I started having episodes where I would feel really weak and shaky, like I was going to pass out. I would break out in a cold sweat and my heart would feel like it was pounding out of my chest. I would have to lay down and try to eat something, I would usually feel really tired and weak after. I went to the doctor and he diagnosed me with Anxiety/Panic Attacks. I didn't feel anxious and had a hard time accepting the diagnosis. He put me on Xanex for a month, I had to stay on a low dose and break it into fourths to even function (otherwise it would knock me out.) It seemed to help shorten these attacks, but didn't really stop them all together. He recommended I get on something more permanent for anxiety, but I really didn't feel like I was anxious.
 
Fast forward to today, I am having migraines and extreme headaches everyday. Today is the first day I don't have an intense headache, but these types of "good days" only usually last half a day. My docor recommended I get a bubble test due to my family history of PFO. My mom was experiencing TIA Strokes and eventually had the closure. My little sister also suffered from chronic auras and migraines, she had the bubble test done and was able to repair her PFO hole very quickly, since then her migraines are gone and she has so much more energy.
 
My doc ordered the bubble test for me, I had to wait a month to get into into a cardiologist. He said I do have a PFO, but a PFO closure has become a very contriversial topic. That there are not enough studies out there to suggest that a PFO closure actually helps anything. I explained that my mom and sister and cousin have all had very positve expereinces. He told me that they would need to do a TEE to determine whether or not I had an  atrial septal aneurysm (which my mom had.) He said if I did have an ASA, it would help my "case" in possibly getting the closure. He also ordered an MRI to see if I have any signs of stroke. I am getting these test done next week. He said I also need to seek treatment with a Headache Specialist/ neurologist to show that I am attempting to treat my migraines. Lately I have been taking 2 Imitrex a day just to function. Once my tests are complete, he will take my case to a board who will vote on whether  they think that I could benefit to have my PFO closed.
 
I asked why my sister was able to get her hole closed without having to do further tests, he said her insurance is different and that there is a divide between doctors who think their patients should close the hole if they are having migraines, shortness of breath, etc. and other docs (like him) who do not see any scientific evidence that closure of the PFO is beneficial unless signs of stroke are there.
 
My mom didn't start having strokes until she was 40, so does this mean I have to live my life with horrible migraines and horrible weak/ Dizzy spells and just wait to have a stroke before they will close the hole? It is sad to say, that I am hoping my MRI shows signs of a stroke so that I can have the closure. This doctor talked to me more about the poltics of the PFO closure, than my health and trying to help me.
 
Wish me luck on my tests, I sure hope that they find something to build my case. I am a single mother and cannot afford to go to another doc in a different network who will perfom the surgery, so I really need this board to approved my case. :( I guess having a PFO alone isn't enough to have the closure. :(

Posted By : kylief86 - 3/1/2013 5:28 PM
Hi everyone,
i'm new to this forum, i'm 27 years old and in nov 12 i suffered 2 strokes, i went through a series of tests to try and figure out where these 2 clots had come from, all scans came back clear, even all the heart scans. As a last resort the gave me a TEE (which was the most unpleasant thing ive been put through!) only to find out i have a medium sized PFO. so now i'm facing a PFO closure on the 15th of this month and really uncertain and don't know what to expect, i know i'm having another TEE whilst they are doing the procedure. What was everyone else's experience with PFO closures and was it painful afterwards. would be great to hear back with everyone's experiences :-)

Posted By : BrooklynneM - 3/4/2013 3:31 PM
Hello,
My name is Brooklynne and I am barely 30 years old. I have been tired from the day I was born I swear there hasn't been a day that I wasn't overly lethargic, over the years full of many doctors visits I have been tested for diabetes, thyroid disease, B12, anemia, arthritis and many more things, I probably just cant recall the long list. On February 7th, I was at work when I had my racing heart problems. I have had flutters for as long as I can remember, but I recall really noticing them about 2 years prior to this. This one was bigger than any others I had encountered, I work at a assisted living center here in town and have access to blood pressure cuffs, and heart monitors. We (my boss/friend) and I checked out my heart rate, which clocked in at 156 bpm astonished I was standing they urged me to sit while they took my b/p which was at 129/92. This was when they took me to the Emergency room. They placed monitors on me, took blood, hooked me to IV's had chest ex-rays done and had me stay for about 5 hours where they monitored me. The doctor came in and said I was having an anxiety attack. I knew better. The doctor didn't seem to care much about my symptoms going along with all this, such as pain in my chest, light headed, tingling in my arms and hands, blurred vision and confusion... not to mention the obvious racing heart and not so hot blood pressure reading. Anything I said I had experienced was blamed on anxiety. So even though he thought he shouldn't he went ahead and had me wear a halter monitor for 24 hours, which was miserable... I hate those things. I waited about 3 weeks for my results to come back, as they were lost and ... well that is a whole other story. Finally my results were in, I drove over 200 miles to see a doctor with half a brain and the courage to care, and there he explained I had major activity on my results but not anything he could pin point my issue with. He said at one point my heart rate went way up to 163 and then plummeted down to 50 within seconds. So he ordered more blood work, a bubble test with heart ultrasound, and a sleep study because he is simply smart. Anyways upon study, I have found apnea which I also have suffered from has much to do with heart related disease, so it all made sense. Finally I get my bubble test done and there it is right there on the screen... the hole. The technician was clear that he could tell me what he sees but he cannot diagnose me, so he shows me the hole, which to me is massive but really any hole in such an important organ is bound to look rather large. He explained that the doctor will probably just put me on aspirin for the rest of my life.... okay, that sounds easy enough... however here I am in the same boat as many others, suffering these symptoms daily that interfere with a very large part of my life not to mention my tedious job I once would have killed to have a break from, I find with almost 2 weeks out of work, Id kill to go back. So I understand why aspirin is given, to thin the blood and to lessen the chances of a stroke.... but the aspirin hasn't touched my massive headaches, it doesn't give me energy, I still feel I will pass out if sitting up from the couch, my heart still pounds, races and has those flutters, I still have pain in my chest and I just don't see how I can continue on with this and go to work again. My work sent me away until I get this all cleared up because I can't perform my duties as this thing.... is really getting to me. I find I am petrified and really appreciating life a lot more, I mean I know this isn't way serious, but at the same time it is serious enough. I have taken all measures I could think of, little tid bits of info to stop some of these symptoms, yet after my altering my lifestyle I still find I suffer just as I did before. I am at a loss, and I fear before my doctor gets to see the results he will say that I just need to pop aspirin for the rest of my life or until my randomly written fate... a stroke... gets me. I can't go on with these symptoms, yet am scared to death to go under for anything. I am in a sense happy to see I am so not alone in all of this, and am happy to find others with this, yet I am sad for you too because I know all too well how much we have been through to find this, and still really have no good information or answers. Anyways, sorry about my rant, this is all very new to me, today is monday, and I just found this all out on Friday, so its a little unsettling, and I can't talk to people because it scares them like my family and friends, so I sort of keep to myself about it and hope my brilliant doctor wont let me down now so I can have my life back. I am after all 30 and I have a lot to see and experience yet, I can't when I feel like this though. confused Good luck to everybody on here, you are all in my thoughts.

Posted By : Mommy of 4 boys - 3/21/2013 11:52 AM
Hello everyone!  I am 31 years old and suffered 2 strokes within 2 weeks, and have suffered migraines since the age of 5.  I am posting to let everyone know I had a PFO closure this past Tuesday and I was feeling good that evening and yesterday morning, then all of a sudden yesterday evening I started feeling real weak all I want to do is sleep.  I called my Cardiologist this am and they had me come in for an EKG which was normal and my BP was normal so they sent me home and said just take it easy.  I have never felt so miserable though!  I have 4 little boys who need me and I hope this isn't gonna be part of my everyday life now!  I cant stand up without being dizzy, I feel heart palpitations, and just lethargic.  Has anyone else felt like this a few days after and how long did it last? 

Posted By : Heart2013 - 4/5/2013 9:04 AM
Hi everyone! I am 38 and just had a PFO closure two days ago. I have suffered from migraines since I was a teenager. Then in my early twenties I started having stroke like symptoms along with them. At the end of last year my general physician sent me to have a echo with bubble ran and discovered my PFO. I was then sent to a cardiologist who ran a TEE. After having it out with the insurance company ( for about 4 months ) here I am patched up and feeling pretty good. Apparently my "hole" was 30mm and was patched with the Gore Helex Septal Occluder. I am just curious how people are feeling after they have had thus procedure and if they have had many problems. I have seen other types of devices used, and would like any I put I can get. Thank you and God bless.

Posted By : LauDea95 - 4/18/2013 2:05 PM
Hi everyone. I suffered a stroke September 2012 at just 17 years old. I have had problems with my heart in the past, having Wolff Parkinson White and Ebstein. After spending 2 weeks in hospital after my stroke they discovered the hole in my heart. I am currently on Warfarin 6mg a day. I don't really fancy spending the rest of my life on blood thinners as i'm young and want to enjoy my life. I got given the option to get PFO closure or stay on blood thinners but the doctors recommended i get the PFO as i'm more at risk of having another stroke with my Ebstein. I have chosen to get the closure and currently on the waiting list but reading about chest pains and breathlessness. I'm terrified of getting palpitations as i used to get them all the time when i had Wolff Parkinson White. I was just wondering, how long do these things last? It has just put me in 2 minds of whether or not to go through with it if anyone could help. Thanks!

Posted By : Anne71 - 4/25/2013 8:15 PM
I have read many of the posts and feel it important to share my experience so far.  I had at age 27 my first stroke.  After all the tests The Dr. thought it must have been from a dissection while wake boarding.  However, no proof could really be found.  All was fine until 11 years later when I had a second stroke.  Again more tests as I was not wake boarding with this stroke and they found the PFO.  I went through closure thinking this was probably the reason for the first stroke and all would be fine going forward.  It has been three years and Monday I am scheduled for an MRI to see if what I experienced recently could have been a small stroke.  I need to state that all my strokes and all my symptoms are in my visual field.  One stroke in the right occipital lobe and the second in the left occipital lobe.  My cardiologist confirmed with the bubble study that the PFO is still closed...so why am I still having problems.  Apparently,new studies are showing links between auras-migraines and stokes.  Let me state I never consider myself to have migraines but I definitely have had visual experiences lasting 15-20 minutes.  Although infrequent I have had them around the times of each stroke and immediately after the PFO closure.  I am at a complete lose as to the reason for all of this and what to do next.  My neurologist prescribed Topamaz but after learning more about this drug I don't think I am going to start this prescription... Anyone out there with some help and a good Neurologist in the San Antonio area?  Thanks all

Posted By : KBH - 5/4/2013 5:49 PM
Hi everyone.

I am new to this site and grateful to find it. I've spent many nights reading & re-reading your posts and have found much comfort. I was diagnosed with a Grade 6 PFO about a month ago and have been in knots about it ever since. I have suffered from migraine w aura since I was 16 (I'm now 33). I have times in my life when my migraines are very bad and then I have times without any. They have returned again since the birth of my baby and are very hormonal based. After some recent sclerotherapy for veins I suffered intense migraines after each procedure. The doctor who did the procedure mentioned that he'd been to a conference and saw Dr Sharpe speak about PFO & migraines and he thought I would be a candidate for PFO. So I booked for the bubble study and wouldn't you know it, a Grade 6 PFO! Just my luck. I've had the roughest 12mths. I vomited 10-15 times a day for my entire pregnancy, then had surgery for retained placenta, then had emergency surgery for a gang green appendix, then hernia repair, then a flexi sigmoid and now this. I'm so sick of being sick. I know I haven't had it nearly as bad as a lot of you, but I feel beaten and unable to get through another surgery, let alone on my heart.

Anyway, I have booked for my PFO closure on Wed 15th May 2013 and I am so scared. I really hope its the right decision and I'm not opening a whole new can of worms like AF, which i think would be worse than the PFO. I'm also worried that i'll still suffer migraines/TIAs after as some of you have mentioned. I don't think I've ever had a TIA but my migraines can be so severe, I'm wondering now if perhaps I have.

I live in Brisbane, Australia and there is not a lot of information here regarding this procedure. I've seen 2 Cardio's. 1 is very pro closure and the other is against. The 2nd Cardio said that PFO's pose no risk, unless you get a clot and suggested i go back on the pill if its stopped my migraines in the past. But hang on I thought, doesn't the pill increase your risk of clots?! I am booked to have the surgery with Dr Ross Sharpe at Pindara Private Hospital and wondered if anyone out there has had this done by this doctor or recommend anyone in Brisbane? Please help!

Post Edited (KBH) : 5/4/2013 11:33:44 PM (GMT-6)


Posted By : KBH - 5/4/2013 11:59 PM
LammingtonMan,

Just wondering who did your PFO closure and how are you feeling 2yrs on?

Posted By : EMBRACKE - 9/18/2013 8:39 AM
Hi everyone,

I came across this forum while researching PFO procedures. I recently found out that I have a small hole in my heart, and my doctor said at this point he doesn't think I need to close it, but I get daily headaches, palpitations, and sparkly dots in my vision. I've complained of feeling weird and all these symptoms for about 12 years (I'm 26 yrs old) and was always told I'm a hypochondriac and it's just my anxiety/panic attacks, and just found out a few weeks ago from a cardiologists that I have this hole. My dr also said if at any point I wanted to discuss having the surgery we could. I think I want to talk to him about it because I feel bad more often than I do good physically (the daily headaches, especially after I exercise, being tired all the time, frequent palpitations, and of course the anxiety I get when I feel these symptoms)

I've seen a lot of pros and cons and to be honest some of these forums have expressed so much bad AFTER the surgery that it's making me worried. I feel like I need to do this if it's going to make me feel better and reduce the chances of me having a stroke (which I'm petrified of after reading these forums) but I'm just so worried of what can happen. I guess I don't really know what I'm looking for here, I've kind of lost my point while rambling. But any suggestions or words of encouragement based on getting the procedure done vs. not getting it done?

Posted By : workoutcrazy9 - 9/26/2013 12:05 PM
Hi everyone,
 
I just joined and have been reading everyone's experiences and wanted to contribute mine in case it may help someone.
 
I'm 48 yrs old and have had migraines since 13 but that has not been a major issue for me.  Definitely not a deciding factor in my PFO closure decision. 
 
At the age of 39 (09/2004), I had a stroke which left me with partial numbness in my left thumb and index finger.  The stoke may also have impacted my memory a bit.  I have a history of alzeimers in my family which may be a factor but I'm not willing to get tested for that yet.  At the time, the doctors did not know to perform a bubble study and therefore did not find the cause of my stroke.  I was told they couldn't find anything wrong and that I should take a 325 mg aspirin every day.  I ignored the doctors advice for several reasons (which I now understand was not a very smart thing to do) and continued about my daily routine.
 
At the age of 46 (10/2011), I suffered a TIA.  No permanent damage but an extremely unsettling experience none the less.  I went to the emergency room where they could find no evidence of permanent damage.  They did a bubble test and found the PFO.  I was told to take a 325 mg aspirin every day and was referred to a local cardiologist.  I took the aspirin as prescribed this time.  At least, long enough to mess up my intestinal tract.  At that point, I attempted a baby aspirin every day but my intestinal tract was still too sensitive so I discontinued the aspirin. 
 
It took me a year to get up the courage to see the cardiologist but I finally saw him in 10/2012.  He referred me to a Neurologist and Hematologist who both could find nothing wrong with me other than the PFO as a possible cause of the stroke & TIA.  They both recommended PFO closure.  I realized at that point that I needed to have the PFO closed.  In the meantime, the cardiologist put me on Plavix which I did for awhile.  Side effects were horrible so I discontinued that medication. 
 
I finally made the decision to have the PFO closed this month (09/2013).  I did not want to be on medication for the rest of my life especially considering the side effects I have with blood thinners! It's taken me this long to get up the courage to have it done but considering the fact that I'll most likely have another stoke (and who knows how debilitating that next one will be), I decided to go ahead.  The procedure was done on 09/17/2013 and I'm now recovering. 
 
My post-procedure symptoms have been:
- pea sized lump under right groin puncture site.  I'm waiting for it to dissipate on its own.
- bruising (as expected) in groin area
- allergic reaction to pain killer used in groin area (under-skin rash which showed up several days after surgery and lasted only a few days)
- tightness or pressure (twinges) in left chest.  I can't tell if it's psychosomatic or real.  I have problems with the muscles in the left side of my back and in the past, that pain has migrated through to the left chest.  So, what I'm currently feeling may be from my muscle problem, from the PFO closure, or both.  I can't tell.
- fatigue.  This could be from the medication I'm taking.  It's Brilinta.  I started on it 2 weeks prior to the procedure and noticed the fatigue then (along with other side effects);  however, since the procedure, I think it's slightly more pronounced.
- shortness of breath.  Again, this is a side effect for me of the Brilinta since I noticed it before the procedure.  It's manageable.
- slight headache.  This is also a side effect for me of the Brilinta;  however, it seems to have improved slightly since the procedure.
 
All-in-all, I'm doing very well.  I started walking daily on the trail (1 mile per day) yesterday (8 days post surgery).  I used to exercise strenuously daily (either 2 mile run or 14 mile bike ride) before the procedure, but will wait at least 1 month before I start that again.   I have trepidation about starting back to my hardcore exercise routine.  I'll have to play that one by ear and with the advice of my cardialogist. 
 
Doctor said PFO closure would be complete 6 months after the procedure when the tissue will have completely grown over the device.  BTW, the device is a 25 mm AMPLATZER Multi-Fenestrated Septal Occluder - Cribriform. 
 
I was in very good health before the procedure and was very active physically.  The only PFO symptoms where migraines and the '04 stroke and '11 TIA.  The migraines were not bothersome given they occur maybe 4 times a year and reliably last 5 hours each time.  The stroke/TIA and fear of a subsequent episode were the deciding factors for me to have the PFO closed.  I plan to return to my workout regimen as soon as I can but will be taking it quite easy during the next 6 months or until I get the final go ahead from my cardiologist that the device has been completely covered.  I believe that for me (so far), this has been a good decision.

Posted By : Old newbie - 4/11/2014 11:41 AM
Hi all,
I'm new here and making my first post.
I'm a 73 year old male living in UK and I have a long history of bad headaches occurring mid afternoon, first said to be migraine but diagnosed as Cluster Headaches about 12 years ago. Around 6 years ago I had a TIA which lead to the discovery of a "large" PFO. At the time the Multi Disciplinary Team (of Consultants at the local hospital) said that they would only consider closing the PFO if I had another TIA. No connection seemed to be made between the PFO and the constant daily headaches and I have only made the connection after stumbling on this site while looking for information about the PFO closure operation.
Anyone in the UK got any information on the safety of PFO closure operations here and/or any effect on frequency of headaches as I'm shortly due for a follow up meeting with the Consultant Neurologist and am wondering how hard to 'push' for the PFO closure operation?
TIA,
Dave.

Posted By : andynyc - 6/13/2014 4:00 PM
All,

I am an Australian who is living in NYC and like everyone else, suffered a stroke and originally was not recommended to go through closing the PFO. Fast forward through a few months a separate neurologist found a large right to left shunt and recommended that I get the procedure done.

Unfortunately the insurance company is denying this procedure and now I am looking to move home so I can get it done there. Has anyone had any issues with getting it done back home?

Posted By : Swch - 11/15/2014 2:00 AM
Hi, I had a pof procedure exactly one month ago (on Oct 15,2014). The reason I had it done is because I suffered a ministroke (difficulty speaking and right hand numbness/tingling).

I am now on 75 mg of plavix and 81 mg of asprin (per day).

Since the procedure my optical migraines have increased (from 1 every 2-3 months to about 5/week) and I've also had tingling / numbness in the right and left hand (never both hands at once).

My doctor says that somethimes the migranes get worse for the forst few months. He isn't sure about the tingling.

I am hoping the tingling is related to the Plavix and will go away when I'm off it in another 2 months but I just don't know. Has anyone had similar symptoms or can offer any advice? I didn't see any posts about similar post operative symptoms.

Posted By : Swch - 11/15/2014 11:23 AM
Hi I tried to post earlier but I can't seem to find my post. I had my PFO closed on Oct 15, 2014. For the most part I feel fine, just like I did prior to the procedure. After about a week I started back into my normal routine of working out daily.

I do seem to have some side effects though. My optical migranes are now more frequent (several a week), I have also had numbness/tingling in both my right and left hands (never at the same time). That happened 3-4 times and lasts 2-5 minutes.

Also, when laying down my heart flutters.

Has anyone had these symptoms (i know many have had migraines but i haven't seen any posts about tingling/numbness)?

Also these things only happen in the morning. Im wondering if they can be a reaction to plavix (which i take in the morning) or made etter by the plavix.

Posted By : DWelz - 1/19/2015 2:49 PM
Good nigth to all of you. As you probably read Inhad my POF closure on 2011. After that I continue to have short of breathness and heart pain with minimun exercice and with the fligth presure changes, I was worry about that becase my symtoms were long lasting. Now 4 years later I have no symtoms. The short of breathness disapear slowly and allow me to walk and carry up to 2 kg 2 years after the closure, 3 years after I could walk fast without pain, and now (4 years after the closure) I can play capoeira without any problem! And pain during fligths dissapear 6-8 months ago.
Hope this information could be useful. And hope you are all ok.
Kind regards from Spain.

Posted By : Kenyetta - 9/23/2015 5:21 PM
Hello I am 41 female who just had a pfo closure a month ago, I have been experience shortness of breath and a very hard time breathing, I had chest pain but it went away, I am wondering if this will get better with my breathing.

Posted By : Kenyetta - 9/23/2015 5:37 PM
Hello I am a 41 year old female who has had PFO closure procedure done a month ago, I am experiencing heavy beating of the heart and shortness of breath and struggling very hard to breathe I was wondering if anyone has had these symptoms and do they go away.

Posted By : arewethereyet - 1/27/2016 6:10 AM
I have never had any repercussions after my PFO closure. I didn't get to find out if it helped with Migraines because as I came off the Plavix (which I believe stopped my migraines for the first time) I went for a nerve block in my neck, which nicked the occipital nerve and caused a horrible response.

Auras all day every day. I am now 5 years out and down to 2-3 auras a week, and living life again over the past year.

I would love to know if the PFO closure stopped migraines for anyone.

Posted By : Mark2015 - 2/10/2016 11:13 AM
I have had Aura migraines since I was 17 years old. Averaging 6-10 times a year. I'm now 55. I had a stroke in the visual part of my brain with visual impairment lasting only 24hrs on Dec 2013 at age 53. Seemed like a big Aura Migraine but lasted far past the usual 45 minutes. MRI discovered the stoke. Echo bubble test found the PFO. Kaiser Permanente would not close my PFO unless I had a second stroke or TIA. In Mar 2015 I had a TIA (left side went numb for a few seconds). My PFO closure was done Apr 2015. Amplatzer device. I had one 24 hour long episode of Afib within a few weeks of closure, but Doctor thinks it was related to dehydration. My last Aura migraine was Feb 15, 2015 just before my TIA....Until this morning Feb 10, 2016. I had an Aura Migraine lasting the usual 30-45Min. I'm so bummed! I thought I was done with these things. I do not get a headache with my Aura episodes. I was on 325mg aspirin and Plavix for 6 months after closure, now 81mg aspirin only. I have no other medical issues, and take no other medications.

Posted By : DWelz - 7/21/2016 11:40 AM
Dear all,

Have any of you been exposed to Magnetic Resonance?
I was last week, for a shoulder problem, I adviced the doctor but they told me that their machine was compatible with de Amplatzer device so I accept to do it, but I have to stop after 4 min due to a heating feeling in the device area and an increasing chest pain.

I wonder if any of you have had this problem (I am with pain again every day just doing small efforts 😞) and if so, when it dissapeared and would like to advice about Magnetic Resonance.

Kind regards!

Posted By : Theresau - 8/27/2016 10:16 AM
All,

I grew up with migraines, anemia, and never being able to do anything aerobic. If I did I'd be worn out for hours. I was just never sure what caused the issue. I was thin...and pretty active but I could never climb or do heavy dancing or aerobic exercises without feeling horrid afterward. I also could never stand for very long. I also had at least 2 bouts a year of bronchial infections that lasted for months. This was my life.

I began having arrhythmia issues in 2003. I was taking Imitrix for the migraines plus I was given Albuterol because I was again having a very bad course of bronchitis. This was the first time I'd received that treatment. I didn't realize I was having a high heart rate. My office was in my home - so I could work. I'd just rest when needed. I did take my blood pressure for some reason. Anyway, I began having breathing problems and we went to ER figuring the bronchitis had worsened. Turned out I was in heart failure. Unfortunately that's all the docs worried about and greatly treated. I kept telling them I was sure it was from the high heart rate - I checked my electronic BP and it showed I had had this heart rate for 6 weeks (about 135). They just didn't listen.

I went through a mess then of meds that made me ill and for which I strongly feel eventually kicked in the arrhythmia permanently. I had an ablation in 2007 by the best in the U.S. I still had episodes afterward. I had another ablation in 2009 by another that was one of the best (Cleveland Clinic) and afterward he told my husband I had another opening which 25% of people have. He never told me this and at the time I just blew it away. I was just overwhelmed with all of this.

I continued to have issues. No meds ever helped me. I again had an ablation in 2014 - different doc again. I have still had issues.

After the 2009 ablation I had to lay at about a 45 degree angle or my heart would being PACs. If I didn't get my angle just right the PACs would worsen to the point that they would be every other beat (bigeminy).

I have been electrically cardioverted now probably 25 times since 2003. It always works - I go back into rhythm.

I didn't go out of rhythm for 1.5 years and then wham it happened again late May this year. The doc used too many joules and greatly burned me. Now I can only sleep sitting up....

I see both a regular cardiologist and an electrophysiologist (for the ablation and cardioversions). The regular said no more ablations when I saw him in July. He said I probably do have a PFO and that the ablations can actually make it worse.

I am going to have a bubble study in a couple of weeks. I keep rescheduling because my heart keeps having PACs and I don't want anything to put me in full arrhythmia.

I do feel that it was during the 2nd ablation that the PFO may have gotten larger. I felt very weak for a very long time after having that ablation. It took me about 3 years to feel anywhere near normal. I could never bend over to pick something up - I would get a wave of dizziness and then the PACs would start. Sometimes I'd be stubborn and just push on with the dizziness (e.g., gardening and bending over) and then feel absolutely horrid afterward.

However, the migraines have gone away. I attributed this to going off gluten. I did that when I found I am gluten intolerant in 2004 (I produce the antibodies). Prior I had migraines very, very frequently. I also take magnesium regularly and I think that helped as well. My migraines were very severe - I would be in bed in pain for days sometimes. The Imitrex was like heaven to me.

I'll let you all know about the bubble study results. Just wanted to fill in others in case they have similar issues.

If it's positive I don't know if I'll get it fixed. I just don't want to take the chance I may have more issues after.

Posted By : SteveN - 10/12/2016 1:14 PM
I am 47 years old and started having horrible migraines at around 13 with a frequency increasing as I got older. I would lose vision good vision for about 5 minutes and the headaches would last usually 2 days. Sometimes getting another while recovering from one. Over the years I found different things that would be triggers and changed diet and behavior to help avoid having them. I gave myself injections when I got them as this would be the only way to get through them. At 38 years old, I woke up one morning with what I thought was the same thing. Losing vision I was proactive and took some aspirin because I was out of Tylenol and didn't want to use the injection yet. Went back to bed and couldn't sleep so thought I would start my day early and went to get up. I immediately fell down and the room was spinning extremely fast. I woke up my wife and she got me back in bed and called 911. Long story short, after many hours it was found to be a stroke, at 38. I mentioned the migraines to the neurologist and he said they were probably "mini strokes". He got me into a study which qualified me for a PFO closure without having to wait for another stroke. I have made a complete and full recovery and have not had a single migraine since.
I thought I would tell my story in hopes it would help somebody with the same or similar issues.
Best decision I ever made.
Good luck.

Posted By : Ambreen Jaiya - 11/9/2016 10:38 AM
This is for all those who have got their PFO closure done. Can you name the device that was used? I'm still consulting doctors on whether I need it.

Posted By : Rlharma - 12/11/2016 7:35 PM
Ambreen Jaiya said...
This is for all those who have got their PFO closure done. Can you name the device that was used? I'm still consulting doctors on whether I need it.


Ambreen, I had this procedure done a week ago tomorrow, December 5, at Hoag Hospital in Newport Beach, CA. Device used: Gore Cardioform Septal Occluder. I'm feeling fine so far. On Plavix for two weeks, and low-dose aspirin for life. Wish you the best.

Posted By : Sobachka - 4/28/2017 12:30 AM
Hello everyone who had pho closure long ago. How are you feeling now? Have the palpitations, tachycardia, migraines, arrhythmia gone?
I am scheduled for this operation for the day after tomorrow. I had an ischemic stroke 4 years ago. There are three possible reasons: migraine, hyper blood coagulation and pfo. Doctors are not sure which reason is the most evident but they recommend to exclude at least one and have the closure. I am uncertain because I have not found any information on how people feel 5, 10 and more years after the operation, and what is more important - is the risk of the stroke really minimised by this operation?

Posted By : straydog - 5/3/2017 7:42 PM
Hello, I just saw your post here. Just yesterday I was reading about PFO & from what I read this surgery is ideally for people that have had strokes & pulmonary hypertension & a few other things. The article said that migraines related to PFO was controversial & still being studied.

Good luck with your surgery. Sending healing thoughts & prayers your way.


PS: Once you have recuperated from surgery please come back & update us. You can start a new thread on this. Thanks.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 5/4/2017 1:32:12 PM (GMT-6)


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