if they won't close your PFO... there is an option

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JaniceRenee
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 9/12/2007 5:40 PM (GMT -7)   
i ended up having a small TIA and was hospitalized.  at that time, they did a TEE on me and found that i had an ASD, not a PFO and ASA.  that, coupled with the TIA made it easier for me to get the procedure done.  i still had to fight with my insurance to pay for me to go to chicago to get it done.  (my ASD was a tricky one, and the only doc who had a chance of fixing it was dr ziyad hijazi at university of chicago.  he's the guy who travels the world training docs to do the catheter procedure.  he's amazing, personally and professionally.  and if you end up having a hole that's hard to close, he is your guy!  he closed mine percutaneously with the amplatzer.  it was easy, i was awake for the whole thing, in and out in a day, and my heart has been great ever since.)
 
but, back to PFOs and the ongoing controversy about whether or not to close them.  i'm not sure it's still the case, but back when i wanted it, the closure device was still considered an experimental device in regard to PFOs, meaning the FDA would not allow it unless it could be proven that it was needed "for compassionate use".  i'm not sure whether it's the patient or the doctor that needs to petitition, and whether it's to the insurance company and/or the FDA, but if you ask your doctor, hopefully, he/she will know. 
 
as for me, i was ready to tell them i couldn't live my life waiting for a stroke big enough to warrant closure.... and then i had my stroke.... and it was a moot point...
 
hope this helps....
 
janice
 
 

els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 9/12/2007 6:00 PM (GMT -7)   
Thank you for your insight Janice.  I have a VSD which was found 2 years ago along with Sick Sinus Syndrome and Bradycardia which I had to have a pacemaker implant for as my HR was in the 20's.  Anyhow, the VSD is still open though I dont know how large it is or anything my cardiologist has said that he didnt feel I was stable enough with an autonomic disorder and orthostatic hypotension to go in and close it.  I dont worry about it though since it has always been there and I never really knew before a few years ago anyway.  Funny huh?

Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate


JaniceRenee
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 9/12/2007 6:13 PM (GMT -7)   
it's true, elisha.... if there are other health issues that come to bear, or if the defect is not causing you any physical problems or emotional distress, then closure may not be the thing for you.

it is funny that we have these defects all our lives and have no idea.

i am the mutant of mutants. not only did i have a strange ASD, but i also have TWO superior vena cavas!!! so, if anyone needs one, give me a holler!
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