PFO ASA and right to left shunting

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!

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?

http://knol.google.com/k/atrial-septal-defect#

read this first...

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?

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

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?

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!

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.

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 

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!!!

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

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.