Fibromuscular dysplasia (FMD): Want to connect

I hope they are better than my vascular neurologist. I have fmd in both carotid arteries. I had a tear in my left side that has healed. If I laugh really hard, I see double for hours. I have neck spasms that I think is my right carotid artery spasming. My vascular neurologist doesn't want to see me until I have a stroke. He doesn't want any yearly or routine images. Guess I will just hope for the best. I had a brain tumor removed in 2019, 5 months later I had a vestibular schwannoma removed at Mayo and went 100% deaf on the right side. I have lots of medical issues. Life is hard and expensive and mostly not fun. Wishing the best for you! 🩷

Hi all. I am a Connect mentor and a Mayo patient currently being evaluated for FMD. I was in ER last week for a GI bleed and they did a CT scan of the abdomen that showed irregularity and beading of the renal and external iliac arteries. After being discharged from the hospital, I met with a primary care provider to discuss follow-up care and CT findings. She ordered an MRA of the neck and head for today, and it showed mild changes in the blood vessels consistent with fibromuscular dysplasia. I also have a known aneurysm in my right ICA that was found over 5 years ago, but it is calcified and minimual risk of rupture, so the neurosurgeon has no plans to intervene. Now I wonder if the previous undiagnosed FDM and aneurysm are related. FDM in the brain did not appear on the previous MRA, performed 2 years ago.

I have an appointment in the Vascular dept at Mayo Rochester next week to discuss. I have no symptoms, so as others have mentioned, it was found by a scan for another reason.

If anyone has suggestions on what questions to ask the vascular provider, I would appreciate.

Tagging the following because Colleen tagged them in an earlier comment. @lpyne @123sandy @parrot53 @GratefulEveryDay @kelsi @mom4thelord @queenkeb @caroline58

Thanks

@chanda79
Wonderful, you have a good opportunity to explore possibilities in MN then.

Do you think you will call to see if Mayo Clinic’s FMD department will be able to help you?

I live in FL and have a derm appointment in MN so also trying to see an FMD specialist there in Nov. Currently in Jacksonville, there’s no 3D camera (for skin cancer tracking) and no FMD specialist that I can find.

Hi @chanda79
I am a Mayo Clinic MN patient, though I do not have experience with fibromuscular dysplasia.

I found a Mayo Clinic Overview of FD that describes symptoms, treatments, and how their integrative care works. There is a page included listing doctors and departments you may find helpful: https://www.mayoclinic.org/diseases-conditions/fibromuscular-dysplasia/doctors-departments/ddc-20352151
- Make an appointment here: http://mayocl.in/1mtmR63

What Mayo Clinic location are you interested in visiting?

I am sorry to hear that. Hoping for you that they find the cause of your pain. I am dealing with lower quadrant pain and trying to figure out what is causing it. Wishing you well.

Same for me right now, no baby aspirin at all this week and probably longer as I had severe abdominal pain this weekend and no statins for my blood fats for a month either, hugs!

👍

Has anyone found a Mayo doctor who specializes in FMD?

My diagnosis was from CTA head/neck, CT of renal and ultrasound of carotid. Does anyone know what scan they use for coronary/heart?