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JoniPabst
Registered User
(7/24/03 4:10 pm)
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FMD Arizona
Hello to all! It has been a long time since I've been on-line to check the message board and I've noticed there are some new folks on board! My story is listed under FMD Arizona for the new people. Here is the update on my FMD situation. I was hospitalized again in October 2002 after the headaches increased and I lost the vision in my right eye. After 5 days in the hospital, my vision came back and the doctors think I had a small stroke. I continue to have daily, all day level 5 headaches. I've had these headaches since February 2002. I have follow-up MRI/MRA's every 4 to 6 months to check the status of the 3 brain aneurysms and the FMD in the arteries to my liver, spleen, intestines and the narrowing in both renal arteries. My vertebral artery aneurysm was wrapped and clipped (it was 17mm by 8mm) and the last MRI/MRA has shown that it is growing beyond the wrapping which the surgeons say is not good. They aren't sure what to do except to watch it. As most of you are with this FMD, I too get frustrated but I don't know what else to do.
This website has been a great place to go so that one knows they aren't alone.
Celeste has also been a blessing and an inspiration to me.
God bless you all and keep you in his care!
Joni

itstessie
Member
(11/3/03 9:47 pm)
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Barrow Institute in Phoenix - Stroke Trials
I have some very cool information to share ...

I found a website called StrokeTrials.com (www.stroketrials.com/). They follow dozens of trials of surgeries, angioplasties, and medications. Many times, FMD excludes one from the study.

However, I wrote on the CREST trial (comparing endarterectomy v. angioplasty with stent). The Mayo Clinic coordinating the trial sent me to the coordinator at the Barrow Neurological Institute in Phoenix. I was excluded from CREST but the coordinator, a very lovely, lovely person, said she would ask around. She called me back at the end of the day and said that one of the interventional radiologists would like to speak with my doctor. How cool is that???!! I don't care if I'm part of a trial, I just want to find a doctor who knows what to do and is willing to *prevent* a stroke rather than just treat one.

Don't know where it will lead but wanted to share the resource.

The doctor is: Dr. Cameron McDougall

azmdboard.org/profile.asp?PersonID=23280

Pattiepc
Unregistered User
(2/5/04 6:24 pm)
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My Recent Bypass Surgery
Joni,

God Bless You!!! I've recently been diagnosed with FMD and had a renal artery bypass. My blood pressure was so high that even being on 5 meds at once could not control it. The bypass didn't go well as we hoped and I've ended up loosing 2/3rds of my kidney. The good news is my blook pressure is down tremendously. I knew there would be a chance of this out come but the Doctors felt I'ld loose it eventually and was at an extreme high of a risk for a stroke due to my high blood pressure.

I just wanted to let you know that I admire your strength!!! FMD needs to come to the forefront for testing and research. We can make a difference, as you have to mental disposition.

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