PFO ASA and right to left shunting

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heartbrokenrunner
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 2/21/2011 7:06 PM (GMT -6)   
Hello,

I've been diagnosed with PFO, ASA and right to left shunting. I'm a 37 year old female. My cardiologist suggests I have a catheter closure, but I have yet to do my saline bubble test. Apparently, from my symptoms (aural migraines, chest pains, syncope, etc) and the echo data, he deems closure the best option, but will make a solid determination after the bubble test.

I am an avid runner, diver and active person. I just ran two marathons and am signed up for another one in 7 months, which requires at least 4 months of training prior to race day. A friend's brother had a stroke and the PFO closure and lost a significant amount of weight as a result. He is not physically active, but he said there were many lifestyle changes, like not being able to drive or sit in the front seat of a car, because any minor impact could result in a fatality.

What are the lifestyle changes? How long will I not be able to exercise? Will I be able to dive or run marathons again? How long does one need to wait to fly after the procedure? How long will I be on medication, and what effect do they have? What medications (blood thinners, antiobiotics, etc?)? Is it normal to go through a period of depression afterwards, due to the changes? Does the procedure leave you feeling better? What is the average period of convalescence? How long will I need to be in direct care of someone after the surgery?

Thank you!

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 2/21/2011 7:18 PM (GMT -6)   
Hello HBR,
 
Welcome to HealingWell.  I am so glad you found us.  Has you Dr. done a
 Transesophageal echocardiography - an ultrasound test used to visualize the heart and defect, where an imaging probe with a camera is placed into the esophagus . The bubble test is normally done at this same time by the cardiologist that performs the TEE.  I had 2 TEE's in one day - long story smhair .

Try not to anticipate that you will not be able to resume you normal activities but do discuss these questions prior to surgery if you should need to go that way.

Thinking of you and please know I care.


~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

Post Edited (stkitt) : 2/21/2011 5:21:21 PM (GMT-7)


heartbrokenrunner
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 2/22/2011 2:30 PM (GMT -6)   
Thanks for the feedback. I appreciate the warm thoughts. Sorry to hear about your double TEE. Sounds terrible!

Is it necessary to have TEE? I think I'm only scheduled for the saline bubble. Is one better than the other at imaging?

sheba2222
New Member


Date Joined Sep 2008
Total Posts : 17
   Posted 3/1/2011 2:23 PM (GMT -6)   
hi, I had a pfo/asd a couple of years ago, they put in a amplatzer 25mm to close the holes. they went up the groan. well that lasted for a year because i was still having problems breathing. they did the bubble test again and saw that the bottom was not closed it was leaking.
So on March 22,2010 i had to have open heart surgery for them to take it out. But I get scar tissue really fast and I'm still having chest pressure. they tell me that my heart of good, but I have to differ. do your research first. good luck. and god bless

sheba2222
New Member


Date Joined Sep 2008
Total Posts : 17
   Posted 3/1/2011 2:24 PM (GMT -6)   
http://knol.google.com/k/atrial-septal-defect#

read this first...

heartbrokenrunner
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 3/1/2011 11:12 PM (GMT -6)   
Thanks, Sheba2222. Interesting article. I appreciate it. I have to say, I've been doing a lot of research, chatting to people, and really hearing the controversies. I've heard that in almost any country outside the US, doctors will instantly close a PFO, whereas in the US, there is the controversy between closure or staying on blood thinners. Apparently a lot of hospitals here are beholden to pharma companies with thinner clinical trials, so many doctors won't encourage closure. But I also understand that there are complications, such as yours. It sounds like a nightmare and I'm sorry for you.

So strange, I feel pretty healthy. I'm nervous. Still not sure what I'll do. How many surgeons/staff were on duty for your closure? How long was your open heart procedure? How did they know it was leaking?

Sorry for all the questions, but there's so much to know!

Stay well.

sheba2222
New Member


Date Joined Sep 2008
Total Posts : 17
   Posted 3/2/2011 8:14 AM (GMT -6)   
I had mine done in Syracuse, NY . I had quite a few doctors but the main doctor that is the best of the best is Dr. Zhou. He did my surgery in 7 hours. Where are you from?

heartbrokenrunner
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 3/2/2011 10:10 AM (GMT -6)   
7 hour open heart or cathater closure?

I'm in NYC. Have you heard of Dr. Bergman or Minutello?

How much of a defect or shunting do you think requires closure? I don't want to be in blood thinners for the rest of my life or be a waiting rime bomb for a stroke.

sheba2222
New Member


Date Joined Sep 2008
Total Posts : 17
   Posted 3/2/2011 3:41 PM (GMT -6)   
the cath was first and that took 3 hours cause they had to keep going in through the groan and measure the size of all the holes. but the open heart was 7 hours...but if you do need it done, then just do it and you will feel better in the long run. if you keep pondering over it, you just get wondering and feeling worse everyday instead of getting better. My situation is that I get scar tissue really fast and my whole life was surgeries from my back to my neck to the arms..legs...yes ...i'm a mess, but there is hope for you...so go for it and start feeling better already. take care..and god bless

heartbrokenrunner
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 3/2/2011 6:39 PM (GMT -6)   
Just came back from the docs again. I have to wait on the saline test before they decide to do the TEE. One cardiologist identified the PFO and ASA. They saw significant left to right shunting. Today we could see shunting with the saline test, but haven't gotten the official results back. My new cardiologist said that he would recommend not doing the closure procedure, even with the identified ASA, PFO and shunting unless there is a lot of regurgitation because the risk of closure doesn't outweigh the benefits. But that makes me just feel like I'm playing roulette for a stroke and possibly other right ventricle problems. What do you think?

sheba2222
New Member


Date Joined Sep 2008
Total Posts : 17
   Posted 3/3/2011 7:39 AM (GMT -6)   
Hi, when I had the bubble test done in the doctors office for the exact same thing that your going through, I got to watch the test being done. Before I found out what was happening...I was mowing the grass, all doing house cleaning. Any ways when the doctor did my bubble test his eyes popped when he saw what my heart was doing. The hole that was in the wall between the right and left vent was so large that the oxygen blood was just gushing over into the left side. He told me to STOP ALL that I was doing and just rest until he got a hold of a surgeon in Syracuse, because they didn't do the closure here where they go up from the groan. He said that if I keep doing what i was doing that I would have a major stroke. He uses my video to have his seminars with the other cardiologists because it was that good. I had the tests with the TEE. But I think that the New Cardiologist might be right ...but I would ask to at least have the saline (bubble) test done. It doesn't hurt and you could watch the monitor while they are doing the test. If they do, ask for them to explain to you what is happening on the monitor. the more red/blue is the blood moving. the new doctor is more up to date with today's medical procedures. But if there is significant from the left to the right then I think that you should have it done...the Amplatzer closure the through the groan. Just tell them. Your paying them to help you and if your scared of a stroke and other ventricle problems then just tell them. How old are you anyways? I'm 51 female. do they have a idea how big the hole is?

juejue11
New Member


Date Joined Mar 2011
Total Posts : 1
   Posted 3/9/2011 2:44 PM (GMT -6)   
I have just got out of hospital this morning, after having a small stroke on left side of brain and what they think is a TIA on right side of brain. I have PFO and ASA. I have been on bloodthinners for 6 years now, and have a theraputic level according to my INR, still didn't stop me having a stroke though. They now have me on asprin as well and on cholesterol medication to try and help with the risk of clots. I also have a condition called APS or hughes syndrome which itself causes blood clots, so I am in a postion where blood clots are kinda par for the course
I am just wondering if surgery is an option I should be considering, my dr is getting a referral to one in kansas city, which is closest to where we are, just dont want to be opened up, apart from the issues with clots anyway, surgery isn't something I want to do unless its going to help me. I am 43 yars old, 4 children, the 3 older ones aren't my worry, itts my 8 year ols and the fact that there is nobody here apart from my boyfriend, although he is fantastic with him, I dont think its right for me to 'expect' him to look after him if something happened.

Sorry, didnt mean to be down, jsut kind of worried, as this came out of nowhere

thanks

heartbrokenrunner
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 3/9/2011 9:46 PM (GMT -6)   
Sorry to hear about your TIA. Can you tell me the events that took place? What preceded hospitalization?

From my research, if you have a good contact for PFO catheterization closure, I would most likely do it if you've had both an ASA and PFO, and there is shunting and you've had experience with a stroke. But if you've had blood thinners, they won't do the procedure for at least 6 months from the last time you took them. The research is controversial and equally divided in terms of the possibility of recurrent stroke and the efficacy of both treatments, but personal anecdotes have all been in favor of closure.

I suppose we could discuss the specifics in more detail. What questions do you have, how good is your insurance, and where do you live, so that I may provide you with referrals from my own research.

And yes, you should always think about your children. Don't apologize - what you are going through is truly scary and you want to take care of yourself for you and your kids!

Take care!

holeinheart
New Member


Date Joined Mar 2011
Total Posts : 1
   Posted 3/29/2011 3:32 PM (GMT -6)   
Hi.

I had gotten an Echocardiogram done last Wednesday and on Thursday my doctor called me with the results indicating that it's possible that I have an interatrial septal aneurysm. After looking long and hard into this, it all makes so much sense. about four years ago, I had woken up in the AM with a numb right arm, numb right face and tongue, difficulty speaking, dropped my tooth brush and couldnt pick it up... of course ignored it. So anyways, I have definitely had a TIA in the past and I've always kind of knew it but I too have always been very active, work out approx. 3-5 times a week. I am only 23 years old now, and I am so concerned. I am getting married to my fiance who I've been with for nine years in July this year. And we are very ready to have a family, and I have my whole life ahead of me. I am currently a registered nurse in an ICU and this is just very overwhelming to me even though I see and advocate for things like these every day. I've always been comfortable, confident, giving, and happy, and I've only known about this for a week (haven't even gotten in to see the cardiologist yet) and I find myself walking with my head down, and have lost the drive to really do anything right now. It makes me so sad for my fiance because I'm already feeling like my life doesn't have the potential it once did if I have these defects. I understand I am being so glass half empty right now, and I know that people have worse scenarios than these, but then it happens to you, and you have plans, and a future... and I am just very overwhelmed and not sure how to cope right now. I know I have to wait and see what the cardiologist says, and go for further testing, but I feel pretty confident due to my previous symptoms.

It's almost like I wish I didn't even know at such a young age. I just want to give my soon to be husband children and have the chance to be a loving mother.

Anyways, thanks for sharing all of your stories, it was a little refreshing to read personal feedback rather than googling everything :)

Thanks. And good luck with all of you, my heart and prayers go out to you.

heartbrokenrunner
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 3/30/2011 7:20 PM (GMT -6)   
Well, I now have three cardiologists and am seeing one of the world's specialists for PFOs this Friday. I've read a lot of literature, talked to folks who've had PFOs and ASAs, including a heart surgeon who had the catheterization. One of my cardiologists said I now probably know more than the average cardiologist. I have a science background with tertiary degrees and taught pre-med, so I don't totally disagree, but I'd still like to learn as much as possible, so please keep writing folks!

With respect to the message from "holeintheheart", I completely understand. Coping with the emotional part of this problem is very difficult, and I felt really alienated when I first learned of my condition. In fact, I've stopped talking to one of my best friends from childhood who trivialized the experience. She told me - at least I don't have to have open heart surgery, her dad had had open heart surgery - and I'm just being a baby. Having this condition has changed my outlook on some of my relationships. It's made certain relationships stronger and helped me to let go of those I feel are not in alignment with my perspective or life. And many people are ignorant - they do a quick google search on the internet and make generalized statements without understanding the specifics of an individual case. Furthermore, many people don't know how to handle information like this because they feel helpless and can't deal with the uncertainty. And another thing that really frustrated me is when people make light of the fact that there is a potential for stroke. When they say things like, oh- there's also a probability that you could get hit by a car. Just ignore anyone who brings you down and find a good network of people who can understand you and support you - even if it's a place like this. It helps me to know there are other people going through a similar struggle. Who are scared. There are days I feel I have it totally under control and days when I feel completely torn apart.

I just found out that my insurance denied half my claims and the doctor bills are piling up. I'm scared that I won't be able to get insurance again and will be discriminated for future jobs. If someone gave you a death sentence, it would in some ways be easier, because there would be only one path. The difficulty of anticipating a stroke and not knowing if it will ever occur is troubling because it always lies in the back of your mind. I have to fly on a couple of long international flights over the next couple of months and that worries me - imagine a transatlantic event. There would be no chance of survival.

Also frustrating for me is that two cardiologists think that I may have had TIAs based on my description of things that have happened. I feel quite sure something has occurred and it's almost a relief to know that all those times I thought I had something going on weren't hypochondriac moments. They were real. But I have another cardiologist who says, so long as they don't have it on record - in an MRI or houlter recording, it essentially hasn't happened because they can't prove it. But trying to record one of those events if they are rare and happened over long stretches is like trying to photograph a rare bird in the jungle. Just because you didn't get the shot doesn't mean it doesn't exist!

As for getting married and having children - I would highly recommend having the heart closure through catheterization. I don't know the specifics of your hole, your symptoms or case, but I do know that PFOs increase the risk of stroke during pregnancy significantly. Remember that you gain 1/3 your blood volume when pregnant and also the vasalva reflex adds the potential for stroke. Talk to your doctor about it. And if your doctor doesn't provide you with adequate information or satisfies your worries, see another doctor. For PFOs and ASAs in adults, doctors are very well divided about what to do, so one may tell you one thing and the other the complete opposite. After 20 years of research, the data is still totally inconclusive. So neither is right or wrong and the outcome is case specific based on your symptoms and life preferences.

One thing many people claim is once they've closed their hole, they usually feel invigorated and happier. Apparently having a PFO promotes depression - maybe due to circulation or oxygenation. Most say they feel greater vitality once it's closed. And it is understandable that you should feel sad when diagnosed with a condition. It would be weird if you didn't. Hang in there and all will be fine.

Captain's Heart
New Member


Date Joined May 2011
Total Posts : 7
   Posted 5/22/2011 11:14 AM (GMT -6)   

Heartbroken:

 

It has been a couple of months since your last post and I was wondering how you were proceeding with your testing and research? 

 

I probably should have started looking on here a few months back but thought I was able to do research on my own (I have a medical background which makes me a terrible patient and I want to know everything) but there is nothing like getting first hand information. 

 

So to get to as many people as possible I am posting my situation and question on a few other's post in hopes for additional answers.

 

I have been reading a lot about the PFO closure since I am having my procedure done this Tuesday (5/24/11).

The PFO (approximately 22 cm) was just recently discovered last December and with a recent stroke we decided this needs to be fixed. With all I have survived I don't want to risk another stroke that could put me out of commission.

I am 58 years old and have had all the typical symptoms - Migraine headaches with aura since I was about 14, headaches in general, recent stroke March 2011, history of prior TIAs and found an undiagnosed stroke via MRI last year, recent worsening shortness of breath, extreme tiredness, numbness, tingling, visual disturbances, etc, but have one major difference than most people I have read about on here as I have also had triple bypass (in 2004) - surprisingly the PFO wasn't found at that time (???). So to have something else with my heart has been a bit unnerving and the idea of having a foreign object placed inside my heart is just a little perplexing. nono

I appreciate all the information everyone has posted - none of which my doctors have shared with me - especially knowing about the chest pain that seems to follow this procedure is especially helpful (since I have had heart problems) - the feeling of having a 'chicken bone' stuck in my chest (as many have described it) might be good information to know.

My main question is - anyone else out that who has had bypass or other heart surgery and were there any additional complications because of the prior surgery?

Any information is greatly appreciated.

I will update my experience with this procedure as it develops to help anyone else.

Thank you so very much

Jan


stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/25/2011 9:11 AM (GMT -6)   
Jan,
 
I am thinking of you and hoping everything went well with your procedure. We will all be waiting to hear how things went and know we are here and praying for you.
 
Gentle Hugs,
Kitt 
~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

Captain's Heart
New Member


Date Joined May 2011
Total Posts : 7
   Posted 6/2/2011 10:49 PM (GMT -6)   

Just a quick update to everyone:

 

I had the procedure to close the PFO last week and today I really feel great.

 

All in all the procedure was very simple and relatively uneventful. In fact, I was awake for most of it and was able to watch as the closure was performed.

 

For the first couple of days I had a fairly severe headache and I have had some pressure in my chest since the addition of the device but everything else is wonderful. The shortness of breath, extreme tiredness, numbness, tingling, visual disturbances and yes, even the headaches have been greatly reduced - not gone yet but definitely lessened. I wish I had done it a lot sooner and if I had to make the choice again - I would without any hesitation.

 

As time goes on I will post additional updates as to my experience and progress.

 

Good luck to all and I wish the best for all of you. tongue

 

Jan


YvetteB
New Member


Date Joined Jun 2011
Total Posts : 2
   Posted 6/27/2011 9:49 PM (GMT -6)   
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!!!

stacysheart
New Member


Date Joined Jun 2011
Total Posts : 2
   Posted 6/28/2011 11:43 AM (GMT -6)   
Hi!
On 09/01/2009 I had a TIA. I luckily have a wonderful doctor that would not take no for an answer and she ran test after test. I was finally scheduled for an echo at the local hospital. This test was not until 10/16/2009. In the echo that found that I had a myxoma which is a growth inside your heart. Mine was made up of blood vessels and was dangling from the left ventricle. They did emergency open heart the next day since they were pretty sure it was throwing off clots and causing my TIA. I was just 31 and the time and very much in shock. Well of course I was glad it was found and very much glad it was over with. Now two weeks ago, I had another TIA. Neither one of mine has been major mostly just loss of vision in one eye for a limited amount of time. I was scheduled for a TEE this past week and much to my surprise they found a PFO. My first thought is I cant believe I am dealing with something like this again. I do feel very lucky because after my open heart I did get pregnant and have a very healthy and happy ten month old baby girl. Knowing what I know now, I am very lucky not to have had complications during pregnancy or child birth. I am waiting on my appt with the cardiovascular surgeon. I feel pretty sure at this point they will want to do the surgery. I am pretty scared about it but I guess in the end I am more scared of having a stroke. I will say in the back of your mind I always wonder if it really happened. Maybe I just imagined it and really I am just fine. Maybe I should not go through with the procedure. Of course I then wake up and realize I have to be here for my kids. I am a city carrier for the local post office and so my doctor has pulled me out of work for now since she does not want me out in the heat at all. Are any people put completely to sleep for the procedure? I really dont feel like I would want to be awake for this. How long is recovery? I was out of work for 13 weeks with my open heart so i am assuming it will not be near that long. Thanks for any advice and comments you can give me.

Karri1129
New Member


Date Joined Jan 2012
Total Posts : 1
   Posted 1/9/2012 3:48 PM (GMT -6)   
Sheeba2222,
 
 Ive been reading posts on here and it seems you might be the only one who has breathing problems due to your PFO. I had an Echo done 3 weeks ago along with a bubble test to find right and left shunting. They say it is very small, but at times I have a very hard time breathing.  I used to be able to put pressure on my chest and heart area to relief it, but now nothing seems to relieve it. But other days I do not have breathing problems. Were your problems everyday?  When I cant breathe it is very scary and uncomfortable. I have a 3 yr old son and chasing him aroound the house gets me winded. Just wanted to know what you have done to help with your problems.
 
And see if there was anyone else out there with the same problems. Thanks
 
Karri

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/12/2012 11:38 AM (GMT -6)   
Karri,
 
Welcome to HealingWell.  Sheeba has not been online since 3/2011.  Hopefully this member will see your post and respond.

If PFO causes symptoms, treatment options are anticoagulants (blood thinners), surgery to close the hole, or placement of a tiny umbrella device to cover the hole. This umbrella can be placed without surgery through a catheter (thin tube).
 
Usually with a very small PFO people do fine without intervention.  However as you are having breathing problems may I kindly suggest you check in with your physician as you could have something else going on.
 
Kindly,
 
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

www.healingwell.com

"only as high as I reach can I grow, only as far as I seek can I go, only as deep as I look can I see, only as much as I dream can I be"

ragolia1
New Member


Date Joined Jan 2012
Total Posts : 3
   Posted 1/14/2012 11:39 PM (GMT -6)   
I am new to all of this and am trying to gather information and understand PFO...  I am an active 50 year old woman, but I had a TIA on 9/24/11 and have been going to specialists since then trying to discover the reason. I didn't "fit" the risk factors ie: nonsmoker,low blood pressure, healthy weight, etc. I finally was diagnosed about a month ago. I since have had a bubble test and echocardiogram(s). Also a TSD. I was on aspirin but I was having extremely low blood pressure. Now no meds. I am going to have surgery to have it closed. I have found my energy level has been deteriorating, and am wondering if this is a usual reaction? I have so many questions and would appreciate feedback and comments that you may have.

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/15/2012 11:27 AM (GMT -6)   
 
Hello and welcome to HealingWell. 
 
A short comment re PFO - A PFO is a hole in the wall (septum) that divides the right and left atrium (chambers) of the heart. We all have a PFO during fetal development, but it usually closes before birth. The right side of the heart receives blood and pumps it to the lungs for oxygenation. The blood then goes through the left side of the heart to be pumped to the brain and other organs. A PFO can allow blood that hasn't been oxygenated by the lungs to get into the left side of the heart, thus being pumped to the brain and other organs. If this happens, the body doesn't get enough oxygen. So yes you could easily have a decrease in your energy level IMHO.
 
Please feel comfortable in posting your questions here in the forum and we will try to help you. Knowledge is power.
 
Again a warm welcome,
 
Kitt
 
 
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

www.healingwell.com

"only as high as I reach can I grow, only as far as I seek can I go, only as deep as I look can I see, only as much as I dream can I be"
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