PFO closure and recovery information

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Leenie
New Member


Date Joined Dec 2006
Total Posts : 9
   Posted 12/31/2006 6:24 AM (GMT -7)   

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!


patched1129
Regular Member


Date Joined Dec 2007
Total Posts : 32
   Posted 12/3/2007 3:20 PM (GMT -7)   
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.

tafish
New Member


Date Joined Dec 2007
Total Posts : 4
   Posted 12/19/2007 4:30 PM (GMT -7)   
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!

patched1129
Regular Member


Date Joined Dec 2007
Total Posts : 32
   Posted 12/19/2007 4:57 PM (GMT -7)   
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?

snugglesrn
Regular Member


Date Joined May 2007
Total Posts : 40
   Posted 12/20/2007 5:23 PM (GMT -7)   
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.

patched1129
Regular Member


Date Joined Dec 2007
Total Posts : 32
   Posted 12/20/2007 6:04 PM (GMT -7)   
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!

snugglesrn
Regular Member


Date Joined May 2007
Total Posts : 40
   Posted 12/21/2007 3:39 PM (GMT -7)   
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.

tafish
New Member


Date Joined Dec 2007
Total Posts : 4
   Posted 12/23/2007 11:10 PM (GMT -7)   
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.

bobby181207
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 1/7/2008 1:25 PM (GMT -7)   
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?

patched1129
Regular Member


Date Joined Dec 2007
Total Posts : 32
   Posted 1/7/2008 1:47 PM (GMT -7)   

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.

 

 

 

 


Wildfire27
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/10/2008 8:23 PM (GMT -7)   

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


patched1129
Regular Member


Date Joined Dec 2007
Total Posts : 32
   Posted 1/10/2008 8:32 PM (GMT -7)   
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)


Wildfire27
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/10/2008 8:37 PM (GMT -7)   
Thanks Patched1129. I really appreciate it. I hope for your continued healing and hope to post good news tomorrow.

Thanks again,
Wildfire27

upanatom
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 1/15/2008 4:39 PM (GMT -7)   
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.

patched1129
Regular Member


Date Joined Dec 2007
Total Posts : 32
   Posted 1/15/2008 5:06 PM (GMT -7)   

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.

 

 


upanatom
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 1/16/2008 2:48 PM (GMT -7)   
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.

patched1129
Regular Member


Date Joined Dec 2007
Total Posts : 32
   Posted 1/16/2008 3:03 PM (GMT -7)   

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.

 


upanatom
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 1/17/2008 7:30 PM (GMT -7)   
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.

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/17/2008 7:45 PM (GMT -7)   
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.

upanatom
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 1/17/2008 10:59 PM (GMT -7)   
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.

Wildfire27
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/19/2008 10:42 AM (GMT -7)   
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

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/22/2008 5:48 PM (GMT -7)   
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....

Wildfire27
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/24/2008 1:01 PM (GMT -7)   

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


upanatom
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 1/27/2008 12:57 AM (GMT -7)   
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.

Wildfire27
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/27/2008 9:21 AM (GMT -7)   

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

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