Fibromuscular dysplasia (FMD): Want to connect

@parrot53 with my FMD, I experience neck, sinus (left side), occasional chest pain, back pain, leg/calf cramps/heaviness, dizziness, lightheadedness, morning headaches; and, renal artery stenosis, celiac artery aneurysm and dissection; and, auditory changes (decreased hearing and discomfort in left ear and visual disturbance on occasion. I was diagnosed @ Mayo following cardiac, vascular, auditory, spine, nephrology, and gastrointestinal consults and tests. I live near Chicago and have trouble putting together a treatment team…conflicting opinions, etc. I miss Mayo given the ease and quality of care that is so well-suited to addressing issues associated with FMD.

@roch
Thankyou so much for sharing I really appreciate any insights. I am assuming next steps will be a full body scan but don’t know.
Any other questions I should ask?

-Mine too showed up as beaded on scan
-It also showed up incidentally due to hernia constipation issues where PCP Dr heard swishing listening to my stomach
- never smoked
- no headaches, no migranes, no ear ringing, no kidney issues

The vascular doctor is a surgeon but I think I am going to him as he is a vascular specialist. My PCP physician had 1 other patient with this condition so she is sending me to the same vascular doctor as her other patient within Hackensack Meridian.
I trust PCP Dr so going to her recommended doctor. Right now that’s all I know.

PCP Dr said I will probably move to blood pressure medication maybe beta blocker.
I am on a water pill now for blood pressure .
PCP Dr said will probably have periodic scans.

Thankyou again appreciate your sharing

@cyndiho
Welcome to Mayo Connect. I am in a similar situation to yours. During a scan of my abdomen in ER this Jan. for another reason, it showed a beaded appearance of the bilateral renal and external iliac arteries, which indicated FMD. I had follow up appointment with the primary who ordered an MRI of the neck and head to see if there was any other evidence of FMD.

Last week, I had a consultation with a vascular specialist at Mayo. Though everyone's situation is different, this is what I learned at my appointment.
- The exact reason why someone has FMD is still uncertain. Could be a genetic reason.
- More common in women, so maybe related to hormones.
- If a history of smoking, may be more at risk.
- May have had most of my life. Usually found incidentally due to a scan for another reason.
- Different types, mine shows as beading because on scan looks like a string of beads, widening and narrowing sections. The risk is that if the narrowing segment of the artery occludes the blood supply, it could cause complications.
- In my case, going forward, mine will be just monitored, usually a new scan once a year. Though I do have another appointment with vascular after the genetics appointment due to other vascular problems.
- It does not spread to other arteries. If it appears in one artery, it does not mean it will appear later in another artery.

I do have an appointment with genetics this week. I have a couple of other arterial issues, so they want to rule out if there is another genetic reason, which might be helpful for family members to know. After the appointment, if the provider recommends blood testing, I will decide whether to proceed based on cost and insurance coverage.

Blood pressure control is important in FMD; my blood pressure is under control.

You mentioned a vascular surgeon; are they thinking you will need surgery to clear your arteries?

I was just diagnosed with FMD and going for first appt with Vascular Surgeon next week
Diagnosis from going to Primary Card Dr for hernia and sharing constipation concerns had a CT with dye and they found this..
I have high blood pressure and am on a STATIN but
I don't have any other symptoms, am athletic, normal weight 68 year old female NYC area.
Any guidance, suggestions, from your experiences appreciated.

@jwillits8
I meant this to go to @roch

@JustinMcClanahan
@ rich
I was diagnosed with FMD about 3 yrs ago After seeing a neurologist vascular dr in Madison WI, I was told to just take a low dose aspirin per day. I’ve had lots of strange symptoms past few years Drs have not been able to figure out. Mainly sudden faint feeling with HR going way up. I haven’t thought about the FM dysplasia in a long time but perhaps it is part of my problem. I just had stress test with nuclear cardio gram. All ok.
I’m having a PET scan today head to toe. I’m hoping something show’s
up. I’ve become weak and use a Walker to get around due to the sudden feeling of faintness. I also have cervical neck Dystonia. I get Botox for that and the dr has listened to me well. He says it’s the arrhythmias and tachycardia causing my issues. I haven’t mentioned FMD to him.
So after my PET scan today, depending on what shows, I will start stressing the FMD to all my drs. Not sure what can be done for FMD. I’ve tried to get an appt with Mayo, but since my local drs have done so many tests, scans, etc, Mayo doesn’t think they can do any more. I live in small town, basically rural clinics, hospitals. Not a lot of specialists. I’ll try to reply with my PET scan results. I was able to talk my pulmonary dr into it due to a lung nodule. He ordered head to thigh due to all my issues. Thankful for my Medicare supplement plan, I can go anywhere and never see a bill. Supplements are expensive but well worth
it. So thankful I got rid of the advantage plan.

Hi @roch,

Going in to address and investigate a GI bleeding issue and finding an entirely different diagnosis on top of that must have been reeling. @roch, before the discovery of possible fibromuscular dysplasia, was your GI bleeding issue resolved?

As you look to your appointment with a vascular provider and the questions you are hoping to address, I'd like to also invite @yvonnewh2652, @chanda79, @stpaulpoet52, @geechiegal, and @jwillits8 to this conversation. Each was diagnosed with fibromuscular dysplasia and may be able to offer suggestions or questions they wished they would have asked their provider when first diagnosed.

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?