PFO closure-Stroke

HI Everyone,

This is my first post and have been reading tons of posts and personal stories regarding PFO closures. I am seeking advice on what to do.

I had a stoke in January 2014 and almost died. I am 35yrs old and run 5K's and participates in Mudmans etc. I feel I am pretty "fit" for my age etc.

The stoke took me by surprise and I was life flight in order to have emergency surgery to "suck the clot out". After this was done it has taken me about 3 months to fully recover somewhat and I feel extremely lucky.

I have been so far medically treated with Xarellto/Warfin. I hate being on medication and contently think of how dangerous being on these drug are when an ER situation occurs.

During my stay in intensive care the hospital (United in the Twin Cities ) discovered I have a PFO. I have seek medical advise from my Dr's and some say close it some say don't. My mother died of a massive heart attack at the age of 58 and had double bypass surgery at the age of 41 *I am getting close to that age.  I am afraid if I choose to close this and this results in Afib I may increase my risk of a Heart Attack. 

I am most nervous about having this done and regretting it. I would like to get off the Xarellto and go onto a daily aspirin after closure. I can not find any success stories and most posts I have read are very old.

Is anyone have information on this? I have a3 and 8 year old daughters that I want to so desperately make the right decision. My husband is super dad in my eyes and I respect his opinion and at this point he is so on the fence as well.

I am just seeking any sort of advice good or bad. Thank you so much for your time.

Thank you so much Kitt! This does help and I am going to get a third opinion. I thought that United was wonderful too and I don't work for them LOL... Thank you so much for replying to my post. I have been on the fence and you did put me at ease. I was "thinking" I was over thinking the whole thing. I appreciate your input.

For term0003: Are you on blood thinner? That alone will decrease your risk of a further stroke. I had my stroke in 2010, was eventually put on Plavix and am still reluctant to have a device closure. There really are no answers out there, which is frutstrating, but we can reduce the risks even though we can't eliminate them.

There are risks that many doctors don't discuss. It's looking like PFO closure complications are more common than patients are led to believe. I was also told that I would be send home with a band-aid and "back to normal life" within days!

I am young, healthy and with no previous medical history. I had a stoke in February and a PFO was found on TEE. I have a PhD and ran a psychophysiology research lab for three years, so before making my decision, I began looking at the literature on PFO and stroke, and PFO closure vs medication management. While the science can best be described as inconclusive, there did seem to be a slight advantage in favor of PFO closure. I consulted a cardiologist, a neurologist, and thee cardiac interventionists. All recommended PFO closure so that I would not have to spend my life on blood thinners. No one discussed the following possibilities (which I'm now finding a few small studies that seem to indicate these are real possibilities): 1) That a cryptogenic stroke can actually be caused by prior and undetected Afib, and not related to the PFO (my advice: ask for a 48-hour holter monitor evaluation BEFORE doing a PFO closure), and 2) PFO closure in some cases can bring on a new onset of AFIB that becomes permanent, requiring the patient to be on a heavy blood thinner (like coumadin) and a beta blocker for life (my advice: ask for a realistic assessment of your risk of secondary TIA or stroke risk on blood thinners versus PFO closure, and since the literature has still not conclusively demonstrated a clear advantage of PFO closure, if I had to do it again, I would stay on blood thinners for a few years to buy more time for more research and solutions to emerge. You can always have a PFO closure later, but you can't really undo it once done!).

I am 26. Recently diagnosed with multifenstrated ASD/PFO. I work with adult cardiologist at local hospital. One strongly recommends to not close the hole. Another recommends closing it. So I went to a pediatric cariologist. He strongly recommends to close the hole with closure device. During my consultation with pediatric cardiologist, I told him im allergic to nickel. He then said we need to perform a skin-allergy test with the closure device, because the device is 55% nickel and 45% titanium. So as it turns out im very allergic to the device.

My options are: 1. use the device anyways, allergic reaction consists of migraines, pericardial effusion, arrhythmias, possible lesions..etc. And if allergic reaction persists open heart surgery to remove and patch hole. Or 2. open heart surgery to repair the hole.

I hate both options. I don't want to endure the allergic reactions... I don't want open heart. I'm going for another opinion at Mayo clinic. Would it be better to just stay on asprin and monitor the heart until there is right heart overload/pulmonary hypertension...?

I believe this decision is even harder for me cause I know so much about the heart. I perform echocardiograms and TEE. I know the consequences. I wish there was a closure device that wasn't nickel.

Is there anyone with allergy to nickel that got the closure device?

Jodie: If you're having aFib, I assume you're on coumadin or other blood thinners. If so, you should be aware that fish oil is a blood thinner (so is turmeric, another great supplement). I eat lots of salmon but stay away from fish oil supplements for this reason.

I had my crypto stroke in 2011, and was streamed into the med arm of a study looking at meds vs. closure using the amplatzer. Like you say, the results have been ambiguous, perhaps a slight advantage for closure. But while that means a slightly less chance of another stroke, closure brings on a host of new potential problems as discussed by yourself and others, which a blood thinner like Plavix (that I am on) does not entail.

I'd be interested to hear how you're doing now.

Just so you folks know this is an older thread & Jodie has not been around here in a very ling time. To see when a member last posted here you can click on their name & it will show the date of their most recent post.