Becky Moore
Karen, My sister too has FMD. Diagnosed Sept. 2000. She has it in the carotids. One sided 100% blocked. This side they could not help. Her other side was 90% blocked. They did a balloon insertion. It now has about a 50% opening. This disease is hereditary so you should have your renal, carotids and heart checked. My sister is being treated in Indianapolis. The Dr at Indiana University told her he sees Fmd in the renals about once a year. And has only seen 2 cases in the carotids. She being one. In their search they have been told to check Cleveland heart institute and Mayo Clinic to see if either has more experience with this disease. She didn't because she went ahead with the treatment in Indy. I question if your sister waits until she has a stroke if they can do anything then. I would suggest contacting Indiana University or one of the others before she gets to that point. I think they should be able to balloon her arteries as they did my sister's.