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Fibromuscular dysplasia (FMD): Want to connect

Heart & Blood Health | Last Active: 58 minutes ago | Replies (123)

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@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?

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Replies to "@cyndiho Welcome to Mayo Connect. I am in a similar situation to yours. During a scan..."

@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