On October 31st, Dr Marek Gawel *neurologist* took his time examining me, and at the end of the exam, asked me if I had a PFO. I said "not that I know of" He said " I have a feeling you have one, would you consider being in a study?" I said sure. So he promptly brought in his PFO research coordinator, who works in the same building. and she explained PFO's. And the study. But I was moving to Quebec. So She made me promise to pursue it on the Quebec side and gave me the name of the study coordinator in Quebec.
Afraid of what I might find, I put it off for a while. finally I called and got an appointment for january 4th. They had a team of technicians doing a trans cranial ultrasound and the cardiologist was there, first injecting itty bitty almost invisible bubbles in saline solution in my arm vein, watching as it went into the heart and seeing if it passed from one chamber to the next, therefore, onto the brain. * if it stays in one chamber, your ok, if it transfers, you have the defect*
The results were staggering even to the seasoned cardiologist. too many bubbles to count. That indicates an enormous PFO. When he told me, emotions ran high. After the test, they gave me a diary to fill out religiously every time i got a migraine.
The deal was to return to get a TEE *trans esophageal echocardiogram* to measure the defect, then return shortly thereafter to be tested for nickel allergy and then again on april 04 to see if I was to get surgery to close the hole
But now, it appears they want to kick me out of the study before the april 04 reading of the diary, because I'm having "too many migraine days" to suit them.
They were supposed to tell me for sure on friday, but they just didnt bother!
All my life , PFO has been making me sick, I'm sure of it... too many others with PFO have the same symptoms for me to put it down to coincidence... The increased heart rate episodes, inability to force, dizzy spells(especially when getting up from lying position), irregular heart rate....
So the prospect of knowing that my heart is defective and knowing a fix is so close, yet being denied me, is just intolerable!
Please keep me in your thoughts/prayers
bim
Bim
I'm sorry to hear about that. Isn't there another way to get that PFO fixed without being in the study? It sounds like you have a large hole in your heart. Why woudn't a doctor outside the study fix it?
You are in my thoughts and prayers.
Take Care
Jean Ann
Hi JeanAnne
Thank you for your reply
The dillema is the following... the device to close the defect non invasively is experimental... hence the need for the study.
The other way to close it is to "stitch it" in a manner of speaking, through open heart surgery, but in Canada, cardiologists aren't apt to perform this invasive surgery "just for migraines" you have to have a history of pfo related strokes.
So either I give up hope, or I pester every cardiologist in Quebec till I find one willing to close it through open heart surgery without the stroke prerequisite.
I know its nuts to even consider open heart surgery, but large pfo's like mine really affect your health!
thanks for your thoughts and prayers...
bim
Bim
You have had such a tough time. I will be thinking of you. I hope you can get that PFO fixed.
Please take care.
Jean Ann