I was recently diagnosed with FMD. And of course it may be the culprit for the initial aneurysm. I am fortunate to be a patient of Bryan Wells, MD, Director of Emory University Hospital’s FMD Program in Atlanta, but no one is familiar enough with the disease to discuss it. I recently attended a seminar at Emory Hospital sponsored along with the Fibromuscular Dysplasia Society of America and realized the physicians were learning along beside the patients. There is help in some of the support groups but not many people have had an intracranial aneurysm and FMD. Any insight or experiences you can share will be helpful.
I see Dr. Olin out of Mount Sinai. He is a extremely knowledgeable on the subject of FMD. My case is slightly different. While there is no visible sign of FMD I do have most of the symptoms of it. Tortuous veins, Swooshing in ear, headaches, aneurysms so I am being treated as if I have it. He did say there was one spot that could be FMD but it was not definitive, so while its not 100% I will always be treated as if I have it. He is an amazing doctor and person. Always ready to answer any question you have even if you think its silly. His office staff are also amazing. I always feel that I am only a phone call away to any problem I may have. He also referred me to a great Neurosurgeon who took care of the aneurysms. So while it may be a bit far away if you are looking for the best, I would say Dr. Olin may be worth a trip to New York.
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