PFO closure-Stroke

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trm_0333
New Member


Date Joined Apr 2014
Total Posts : 3
   Posted 4/14/2014 8:21 PM (GMT -7)   

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.


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 4/15/2014 1:10 PM (GMT -7)   
Hello MN Neighbor :-)
 
I have been a patient in the same hospital but never in the ICU. smurf It is truly a good hospital in my opinion and no, I do not work for them. Just thought I would share something we had in common. :-)
 
There are many kinds of heart defects, but the most common is the patent foramen ovale (PFO),or the hole in the heart. The PFO  should close at birth, but, when it doesn't, a blood clot can pass from one  side of the heart to the other and travel to the brain, where it causes a stroke. From what you have shared this is what happened in your case.
 
Your Dr. put you on medication to control how your blood clots.
 
The question of whether or not doctors should close PFOs in patients who have had strokes has been a hot-button issue for cardiologists and neurologists treating stroke patients for years.
 
I cannot answer your questions re Atrial Fib ~ talk with your Dr. re that concern; in fact talk with your Dr. re all your misgiving.  This is a difficult decision for you.
 
I am posting a link to a site you may find very helpful.
 
 
I can only imagine your  fear of making the wrong decision in your case but try to put your trust in your DR. and if you have had 2 opinions and are still sitting on the fence..............find a 3rd cardiologist to talk with re your PFO. Maybe there is no wrong choice no matter what you decide to do.
 
Sending healing prayers to you,
 
Kitt
 


 
~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

Post Edited (stkitt) : 4/15/2014 2:15:44 PM (GMT-6)


trm_0333
New Member


Date Joined Apr 2014
Total Posts : 3
   Posted 4/15/2014 6:31 PM (GMT -7)   
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.

Breathless Lady
New Member


Date Joined Apr 2014
Total Posts : 1
   Posted 4/24/2014 2:11 PM (GMT -7)   
Hi I am new to site just joined tonight. I had x2 TIAs back in Oct 2013 I had had previous episodes but had ignored them, you know what us working mothers we ignore and soldier on. Tests confirmed I had a PFO but I was told it was an insignificant shunt - just had to keep taking medication - to lower blood pressure & Asprin to thin my blood. Since then I am getting more & more breathless I can't walk upstairs if I do anything I am breathing becomes heavy my arms & legs go heavy and I go light headed I have no energy I feel tired all the time. My Dr thinks I might now have a reverse shunt and blue blood getting pumped around due to lower blood pressure, I feel worst now since taking medication . I am due back at cardiologist next week. My question is can PFO get bigger with age ? How come had all my life never been a problem til now ??

PFOtoo
New Member


Date Joined Oct 2010
Total Posts : 6
   Posted 3/4/2015 3:25 PM (GMT -7)   
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.

Griffygill
New Member


Date Joined Oct 2014
Total Posts : 2
   Posted 3/18/2015 10:03 AM (GMT -7)   
Hi,, I had a TIA aged 58, and test showed I had a pfo, and was recommended for a closure. This sounded quite scary but I was assured that if I wanted to be drug free this was the only way.
Well to cut a long story short, I eventually got my pfo closure surgery on Monday, was out and home same day, and it was so simple I didn't think they had done it! I was fully awake throughout, and only felt slight flutterings, and the next day they had stopped completely. Today I have been walking round the garden in the sunshine, and apart from a bruise there is nothing to show for it. I already feel full of energy, which I hadn't since the stroke, and my hands and feet feel warm for the first time in a good while.
I had my operation in Brighton Cardiology Unit (UK), where they have first class equipment.

Hope this helps anyone trying to decide x
Gill

Jodie333
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 6/29/2015 4:55 AM (GMT -7)   
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!).

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 20098
   Posted 6/29/2015 5:03 AM (GMT -7)   
thx jodie. yep, me thinners. x2 by-pass. thx for sharing.
THE HAPPY TURTLE.

NOT DEAD YET!!!!! STILL KICKING AND SCREAMING!!!
'

skell006
New Member


Date Joined Aug 2015
Total Posts : 8
   Posted 8/8/2015 1:21 PM (GMT -7)   
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?

zr_run
New Member


Date Joined Oct 2015
Total Posts : 1
   Posted 10/13/2015 8:04 AM (GMT -7)   
Hello,
I was also diagnosed with a PFO last year. I had a massive stroke (during my sleep...happy my boyfriend notice and reacted quickly) in Sept 2014. I am in the process of getting schedule to close the PFO. I am a marathon runner, so I was wondering how long is the recovery? I am taking Cumadin right now, and my cardiologist allowed me to do a marathon while on Cumadin and he said i would be better after the closure is done. Any advice on the recovery?

PFOtoo
New Member


Date Joined Oct 2010
Total Posts : 6
   Posted 9/6/2016 7:59 PM (GMT -7)   
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.

roger wegner
New Member


Date Joined Sep 2016
Total Posts : 2
   Posted 9/9/2016 5:44 PM (GMT -7)   
I had a stroke while on coumadin. My INR on the day of my stroke was 2.2. I should have been protected from a clot and a stroke. After the stroke they found my PFO. I was advised to not close the PFO and continue with the coumadin. After 30 months of stroke rehab, I was losing ground and became breathless after excercise. The hypoxia got progressively worse. My worst day I dropped to 69% oxygen and my heart rate rose to 144 beats per minute. It took four months to identify the PFO as the culprit. On the way to closure of the PFO they found two coronary arteries that were partially blocked. After two stents and two more months of waiting, I had the PFO closed on August 29. It took a 35 mm device,but it worked perfectly.I have no pain and my oxygen levels are now normal. It was the right move for me.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15719
   Posted 9/10/2016 8:41 PM (GMT -7)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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