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P MACE
Unregistered User
(3/8/04 4:16 pm)
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MY EXPERIENCE WITH FMD
I WAS DIAG. WITH FMD AT THE AGE OF 37. I HAD A TIA
AND THEN THEY DISCOVERED A VERTEBRAL AND BILATERAL
CAROTID DISSECTIONS.
FROM THE DISSECTIONS I ENDED UP WITH BILATERAL CAROTID ANURYSMS AND THEY FOUND FMD IN MY CAOTIDS AND RIGHT RENAL ARTERY.
LAST MONTH THEY DISCOVERED IT IN MY CELIAC ARTERY AND I AM SCHEDULED FOR ANGIOPLASTY OF THE CELIAC ARTERY NEXT MONTH.
I HAD STENTS PLACED IN MY CAROTIDS LAST YEAR-IT MADE A HUGH DIFFERENCE IN MY SYMPTOMS.
I ALSO HAVE RAYNAUDS.
THANKS FOR BEING HERE,
PAM

synwave7
Unregistered User
(3/9/04 1:07 pm)
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MY EXPERIENCE WITH FMD
P Mace,
Sounds exactly like the same symptoms my sister has. She was just diagnosed. Her corotoid arterys are so bad they couldn't get a biopsy they were to weak?

Would you mind giving me the name of your doctor(s). I am looking for any edge in the treatment if this thing. I love my sister very much and would go to the ends of all time to help her. Thanks in advance for any help.

Chris :\

Betty Lecat
Member
(3/10/04 7:31 pm)
Reply
Re: latest postings from new FMD'ers...
Gosh, I'm so sorry to read both your histories!
Please know you are not alone with this disease; there are so many of us (pls also see Yahoo Web Site for FMD) that have found each other searching for answers.
My personal history is that of being diagnosed with FMD of bilateral renal arteries with multiple aneuryms; one large enough to have what they call "bench top" surgery at UC SF in early 90's to remove aneurysm.
I hate to ask this but it's so important as to what facility we're all able to go to...do you have "private insurance" or HMO/PPO?
Where do you live?
Many posts I've read show FMD'ers going to Mayo Clinic/Rochester, Minnesota and in Arizona, University of California SF, and UC Los Angeles...
It use to be a such a few Drs that knew ANYTHING about FMD, but more and more the news on this disease is getting out...
Thanks for posting and if there's any questions, or...anything I can do, pls don't hesitate to ask.
Sincerely,
Betty
from California

P MACE
Unregistered User
(3/11/04 12:03 pm)
Reply
FMD
HI CHRIS AND BETTY!
I LIVE IN CLEVELAND AND SEE A DR. AT THE CLEVELAND CLINIC. DR. JAY YADAV AT 216-444-6160. HE IS VERY GOOD BUT BUSY. HE CANNOT DO MY ANGIOPLASTY UNTIL MAY 4TH,I HATE WAITING THAT LONG.
I AGREE HAVING A GOOD DR. IS EVERYTHING. BEFORE I FOUND DR. YADAV I HAD SEVERAL BAD DR'S WHO DIDN'T KNOW WHAT THEY WERE DOING.
BETTY HAS YOUR FMD SPREAD TO OTHER ARTERYS SINCE YOU WERE FIRST DIAGNOSED? HOW IS YOUR HEALTH NOW?
CHRIS I WOULD BE HAPPY TO TALK WITH YOU OR YOUR SISTER
MY E-MAIL FOR ANY ONE OUT THERE READING THIS IS PDMACE2@YAHOO.COM
IT'S NICE TO HAVE OTHERS OUT THERE WHO UNDERSTAND.

Betty Lecat
Member
(3/13/04 3:28 pm)
Reply
HI! ONCE AGAIN I AM ATTEMPTING TO POST...
I know it's me...but I keep getting "thrown off" site?
Thanks so much for emailing!
Pat...I also emailed you on the Yahoo Website (you're from Ohio, right?) You have one of the GREATEST FMD surgeons right there in Ohio! His name is Jerry Goldstone. He use to be a professor/vascular surgeon/one of the top guys, at UC San Fran. Nancy Dominick (see her post on Yahoo Site) and I both had him (referred by our Drs) about the same time...and we didn't know each other then! We found each other on university medical posts in early 90's trying to find answers to this STUPID disease...
Gosh, I love to see us all Posting...we need to keep these Sites alive as the people behind them are working hard! I know for a fact that Celeste (one of the owners of this Site) suffers from FMD...and there's another one out there run by a gal named Soficrow (will find her site and Post it here for you)...it is wonderful to find others with same fears, complaints, etc as us, isn't it? Even though friends and family love us...it's hard to include them in all our "fears"...
God Bless and "hang in there"
Betty
California

JBubniak
Registered User
(4/26/04 6:50 pm)
Reply
FMD
I am new to this sorta thing but wanted to read others symptioms and results of surgeries and Dr visits. I was diagnosed in 1999 as having a bad ear infection I had the room spin side to side and the Dr at the ER room sent me home. The next year almost to the day I had another attack, only this time my blood pressure went 200/180 and lost feeling in left side and blinded for about 2 hours. This time went to another hospital and a Nuersurgeon was on call, the Ambulence driver had seen this before as a stroke victim and called in quickly and gave me an injection that saved my life. I was then diagnosed as FMD when they saw the MRI and the beading of the cartoid arteres in left side. Now 3 years later it is both sides and I am on straight aspirin 3 times a day to thin my blood, as I also have history of blood clots and they do not want to give me a blood thinner YET.
I am 54 and it tough to think I won't last that long.

Betty Lecat
Member
(6/26/04 12:46 pm)
Reply
How are you doing?
Haven't heard from you since your last Post?
Hey, trust me...if my understanding from all of us out here in "FMD Land" is correct,
"we're DEFINATELY making it"!
I'll check back to see if you "are checking in"
Take care,
Betty

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