Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
My wife has FMD of the carotid artery and they tell us nothing can be done except narcotics.She also has lupus. We have tried all known remedies, 30 to 40 different drugs. Rolling headaches during the day and stabbing migraines at night. We have been to 30 doctors including Mayo and Barrows. Does anyone have this disease and how to you deal with it?
It is possible the best treatment for your wife's condition is to not risk further harm by doing something invasive, and it seems you have gotten many many second opinions. You have done very well to get various opinions. I guess I have some advice to make sure the images and tests they use to come to their opinion are well done technically and read correctly.
My vascular specialist is one of the leading in the country in FMD, if you have not seen him, Dr. Jeffrey Olin of mount sinai NY - worth the trip from wherever you have to travel from. His ultrasound technicians are experienced in imaging FMD - that is critical.
I hope you find some help,
I have FMD, like you I had four opinions before I found a Vacular Doctor that came from New York, to practice in Indiana. she did surgery on both of my carotid arteries. I also wanted to tell you my daughter has Lupus, and one problem she has is migraines. Talk to your doctor that treats the Lupus. I cannot stress to anyone that has FMD to have their blood pressure checked, it can also cause headaches. Don't give up on doctors if your not happy, get another doctor. I have had two carotid artery surgeries, and had a anyersum in my renal artery, my doctor is in Bloomington, Indiana, and she's fantastic.
Hello Heidegirl,
Please contact me at TWSchultz@SwissAmerica.com. Your reply has piqued our interest and we will contact your physician. Thanks and God Bless
Tom and JL
HI READ YOUR INPUT REGARDING TESTING AND INVASIVE PROCEDURES . THE TESTING INCLUDING MRI CONVENTIONAL MRA , LUMBAR PUNCTURES ETC.... MANY TIMES WERE VERY CONCLUSIVE THE LAST FROM MAYO CLINIC . IAM VERY INTERESTED IN LEARNING MORE ABOUT YOUR DOCTOR IN NY. IM IN DESPERATE NEED OF HELP DISEASE IS EVOLVING AND QUALITY OF MY LIFE IS SEVERLY EFFECTED
Hi My vascualr specialist is Dr. Jeffrey Olin. He has published extensively on FMD and has been the key note speaker at the FMDSA national convention (next one in june 2009). He has well trained techs who do the ultrasounds (remember the MD's interpretation of any test can only be as good as the technician performing it) . It seems like a technically complex thing to do - for example when they see beading - they might think it's due to the imaging and search for a part of the blood vessel that's easier to image. well you use ultra sound data in conjunction with other imaging like MRA, and 3-D CT angiograms to determine if a vessel is as bad as it looks or if a vessel that looks fine in the image, actually is restricting blood flow from stenosed inner walls of the artery.
Dr. Olin is frankly the best physician of any specialty I have had- he is also boarded in nephrology, in addition to cardiology. He is very caring, very smart, and looks you in the eye and respects and acknowleges every bit of knowlege you come with- then teaches you more.
I thought a lot about this - and I have confidently hired him!
thank you for the info re dr. olin can you please tell me his location? i have been seen by the fmd specialist at mayo so all the testing you have indicated has been completed several times i have that info i would be very interested in dr.olins opinion.any info would be greatly appreciated. jllynnie
hi jlinnie-
I heard Mayo in cleveland has a good interdiciplinary program (and they will set you up with neuro, renal, cardio,internal medicine, etc people- depending on needs)
My guy is pretty good- again I also think his techs are top notch. Dr. Olin (mount sinai NY) repeated one of my Dopplers and got different results. This US was done locally by a US tech sho looked like she just graduated from highschool. She had little experience and refused to read the literature explaining how to image with FMD. She missed my FMD in my internal carotids...
. the other US I did locally was on the renals. DR olin also read that one during my visit. He said it was very well done, it surprized him since he usually does not see such skill - the tech had about 15-20 years experience.
oh Dr Jeffrey Olin - head of cardiovascular medicine at Mount Sinai NY on upper east side of NYC.
212-241-9454. Some how I got his email first and I naiively emailed him directly with my concerns and he replied - offering me an appt within 2 weeks (significanly better than my local options)
I too have FMD of the carotids.( Hi KP (Rainy from the other FMD site). I've only heard great things about Dr Olin. I'm hoping to somehow get in contact with him but unfortunatly do not have health ins now. So big problem until that issue resolved. My Carotid did dissect spontaniously. It's on the mend. I currently take 325mg aspirin daily ( as blood thinner) and have MRA's about every 6 months to moniter..
The Doctor who did my surgury on the Carotid Arteries is Dr. Newman, she is in Bloomington, Indiana, a great Doctor, she ordered test and a MRA, it showed the pearls on my carotid artery and it also showed I had a kink in my right artery, before she operated on me I had a arteriogram at the Bloomington, Hospital. I had to have a stent in my right carotid artery. I think she saved my life, if I hadn't had all the correct test and the Doctor, I could have had an anuyersum or a stroke. I just saw a new Doctor in Texas, where I live and I will see if he can help me. I asked him if he was going to have a MRA, and he said he couldn't read them? So Tuesday the 19th I am going to the hospital as a outpatient and have test on my carotids and renals. If I can't go to Indiana I now have to go Doctor hunting, when I was in the Doctors office there was a older lady in the office and she told the Doctor that if she wasn't satisfied with a Doctor she would fire them. I believe that you have to have confidence and belief in your Doctor, so I am going to do the same thing, I will search until I get the right Doctor, I once had a Doctor who told me when I had a TIA to call him and than he would see me, that wasn't the right answer. I scares me that a lot of doctors and health care personal know nothing about FMD.
There is a bit of mis-information here that I thought would be helpful to clear up.
Mayo Clinic is in Rochester, MN, NOT CLEVELAND.
Cleveland Clinic, which has opened (January 2009) an FMD Department, is in Cleveland. The department in Cleveland is headed by cardiovascular specialist Dr. Heather Gornik.
http://my.clevelandclinic.org/staff_directory/7/Staff_6671.aspx
Dr. Jeffrey Olin practices at Mt. Sinai School of medicine in NY, NY.
http://www.mountsinai.org/Find%20A%20Faculty/profile.do?id=0000072500001497 193912
If you would like to go to the Mayo Clinic in Rochester, MN, I recommend Dr. Robert D. McBane, a cardiovascular specialist who is highly familiar with FMD.
http://www.mayoclinic.org/bio/10541641.html
There are a few qualified specialists, from the east coast to the west. If you would like information on the qualified FMD specialist closest to your area, please contact me.
Add to the discussion