Fibromuscular Dysplasia

[livingwith]

I have been dealing with high blood pressure for the past 4yrs without any success at controlling it. I even had to double up on my blood pressure medication. In Dec. 2008 my dr heard a swooshing sound in my abdomen and sent me for an ultra sound of my kidneys and iliac arteries. They found a blockage in my rt kidney. I was then scheduled with angiogram and angioplasty if necessary. They had to do the angioplasty on my rt kidney.
My blood pressure is now back to normal. My rt leg however...Read the full article

[kptocs]

I have FMD, and recommend you get second (or third) opinions.
It sounds extreme but it is better use of time to travel to see someone who manages a lot of people with FMD -
For example - I learned that stents are not always the best option for all people with FMD - some of us need it, some (most) don't. Certain BP meds are better for us than others. the ones used for most people with regualr HTN, are not as effective for renovascular HTN.

My cardiologist is aslo a nephrologist and vascular specialist- he manages me medically from head to toe - he referred me to his collegue, an interventional radiologist for surgery, he also communicates to my local primary doctor, and the neurologist I see in my home town.

Though I live in baltimore - and work in the same block as John's Hopkins - I still travel twice a year by train to see Dr. Jeffrey Olin at Mount sinai in New York. I think that is a good idea - for nothing more than a second opinion. your local Dr. will benefit from his input and advice. The ay I look at it - Dr. Olin knows about life long and comprehensive management of this condition and expertise like that is hard to come by. I know there is also a specialized clinic in cleveland and one in chicago. So you may choose one closer to you.

I guess you also have visited other web based resources but if not FMDSA.org is great

You may also want to find out if you have a collagen defect associated with anneurisms - as this some time concurs with FMD. so some areas stenose and other areas balloon out and threaten to rupture. It's a simple gene test.

It sounds like you already lucked out by having it detected and treated appropriately - So now you will be able to avoid mis- management in the future - That seems to be the difference when you have something rare.

I wish you well -

[bammaone]

I have been thinking back over the years of things that my Mom complained of. Of coarse she didn't look sick and we thought it was her blood pressure.But since I've been disgnosed with FMD; I now feel a lot of what she went through. But she too passed away , before I started having any symptons. I see a specialist in Charleston SC. But no one seems to worry about the pain in my legs. And the cold feelings that I have. I'm really wondering if I need to seek a vascular surgeons opinion? FMD is a strange disease that most Doctors haven't had any dealings with. So you are not alone. I hope and pray that you get the right kinds of doctors,and they can help you. I'm going back this month for my 3rd angio.
Sure hope I get more info this time. My husband and I are considering going to the Cleveland Clinic in Ohio; where they have FMD specialists. Good Luck and God Bless

[OREO6]

Follow up: It is now November and I have had 3 surgeries so far. I decided to get a second opinion and my PCP agreed. She sent me to Brigham and Womens hospital to the vascular/cardial care unit. I met with Dr. Gerhard/Herman. She scheduled all kinds of tests and scans and the like. In then end, it was confirmed I had FMD of the right renal artery. Since then I have had 3 angio's. 1 to fix my right leg, the other to fix my left leg and the last to fix my rt renal artery again. So far, the legs have held up, but my renal artery keeps deforming. The Dr. set me up with one of the best vascular surgeons in Boston. He is now trying to figure out if a stent would be better in my renal artery. I am not so sure. Because of the fact it keeps closing up. My blood pressure is still all over the place too. The medication they have me on gives me sever heart burn, and sometimes it lasts all day long. I am on prevacid for that and it doesn't even work. Hopefully, they will be able to stablize my renal artery. I have yet to get an scan of my coratid arteries, I know that is next being as I am getting more and more frequent headaches (migrains). After reading about all the differences with people that have FMD I have come to the conclusion that there is help for FMD patients out there. I wish I could go to the clinic in NY. I can't make it out that far. Take care and thank you for the posts. It has really helped me out....