1. < Heart & Blood Health

Fibromuscular dysplasia (FMD): Want to connect

Posted by lpyne @lpyne, May 17, 2024

I have had 2 neck CT scans and both found MFD- my neurologist states it’s nothing to worry about. In the mean time I have suffered from chronic dizziness, headaches, anxiety symptoms, ringing ears. I have seen a cardiologist, neuro vascular specialist and had a wide variety of tests that all seem normal- except the neck CT. No MFD in renal artery. Curious if I should ignore it like my doctor is telling me or if I should seek a second opinion?

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dmwheaton | @dmwheaton | 3 days ago
In reply to @chanda79 "I didn’t know I had FMD until hospitalized for multiple strokes after chiropractor cracked my neck..." + (show)
@chanda79

I didn’t know I had FMD until hospitalized for multiple strokes after chiropractor cracked my neck to alleviate headaches. The right half of my head is still numb.

Also didn’t know that most people do not have ringing in their ears. I thought the whooshing was normal too.

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I've had the whooshing sound as well & was told that IS a symptom of FMD

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dmwheaton | @dmwheaton | 3 days ago
In reply to @kelsi "Just found out i have FMD in both carotid arteries with a dissection in my left...." + (show)
@kelsi

Just found out i have FMD in both carotid arteries with a dissection in my left. Already had brain surgery to remove a huge meningioma and brain surgery to remove a vestibular schwannoma. Am now deaf on the right side. Still have 1 meningioma in my head. Life is not easy. I love being a walking ticking time bomb. Also, I have to wait for 10 months to see a vascular neurologist. I'll probably be dead by then.

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This is outrageous! Especially given your history 🙁

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dmwheaton | @dmwheaton | 3 days ago
In reply to @caroline58 "Hi, from Sweden. I have FMD in both carotid arteries and in the brain, probably in..." + (show)
@caroline58

Hi, from Sweden. I have FMD in both carotid arteries and in the brain, probably in more places.
I am followed up by a doctor at the medical and vascular clinic at my hospital every 3 months (I work as a nurse there). The dialogue takes place in writing in our medical record system, I write down my symptoms and then she assesses whether I need to see her or not.
Despite my X-rays with CT angiography, the degree of stenosis has not been assessed, which would be important for me to know how narrow my vessels are, which shows how quickly the muscle walls grow in my arteries and how soon I can get sick.
No, the medical follow-up is not good in Sweden either. I had a TIA in 2023 and have headaches, ringing ears. pain from my left shoulder all the way up to my ear, especially when I do something.

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So sorry you are experiencing this & you are a nurse, so far more knowledgeable (medically) than most.

After reading your post, I am more scared than ever.

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dmwheaton | @dmwheaton | 3 days ago
In reply to @sbrown293 "Welcome to Mayo Clinic Connect. Looks like you have already received comments on your post. Folks..." + (show)
@sbrown293

Welcome to Mayo Clinic Connect. Looks like you have already received comments on your post. Folks on this site are great to share their experiences. May you soon find answers.

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Thank you. I didn't notice a comment. Will go back & look.

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dmwheaton | @dmwheaton | 3 days ago
In reply to @lpyne "I’m at my wits end with this… I have literally been checked for cardiac issues, kidney,..." + (show)
@lpyne

I’m at my wits end with this… I have literally been checked for cardiac issues, kidney, stomach, neurological… the vascular doctor was a joke. But I will keep moving forward because this can’t be normal to live with.

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Same here & it's very frustrating.

Different specialists, different scans, different results.
Six months ago it diagnosed then ruled out & recently it was ruled back in.

They also found a small aneurism in addition to the FMD... the clock continues clicking as the condition likely continues to worsen as I am being passed around from one specialist to another.

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dmwheaton | @dmwheaton | 3 days ago

Also had an MRI/CT (dont remember which) scan of my head & chest & kidneys.

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dmwheaton | @dmwheaton | 3 days ago

The neck CT/MRI was the determining factor in my case

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caroline58 | @caroline58 | Jul 2 4:02pm
In reply to @chanda79 "I didn’t know I had FMD until hospitalized for multiple strokes after chiropractor cracked my neck..." + (show)
@chanda79

I didn’t know I had FMD until hospitalized for multiple strokes after chiropractor cracked my neck to alleviate headaches. The right half of my head is still numb.

Also didn’t know that most people do not have ringing in their ears. I thought the whooshing was normal too.

Jump to this post

I have had a TIA that affected my speech and impaired my memory, speech came back but not my memory. Unsteady when I walk.
I have numbness in my entire face and in my lower legs and arms that become icy cold later in the day. Headaches daily.
How are you feeling now?

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caroline58 | @caroline58 | Jul 2 3:50pm
In reply to @chanda79 "I didn’t know I had FMD until hospitalized for multiple strokes after chiropractor cracked my neck..." + (show)
@chanda79

I didn’t know I had FMD until hospitalized for multiple strokes after chiropractor cracked my neck to alleviate headaches. The right half of my head is still numb.

Also didn’t know that most people do not have ringing in their ears. I thought the whooshing was normal too.

Jump to this post

Yes, healthcare is lacking in many countries, even in my country - Sweden. That's why it's lucky this page exists! There's a lot to read about our disease here. There's a lot of ignorance about our disease among vascular doctors etc. The only contact I've had with a vascular doctor didn't have much knowledge of the disease.
I think tinnitus is common with our disease but we have different sounds depending on whether we have or have had dissection or aneurysm or very narrow carotid artery stenosis.
I have it in the largest artery in the brain and in both carotid arteries but nothing else has been x-rayed so I could have more places. I've had a metallic high-pitched noise for a year that can vary in tone from time to time and sometimes knocks. Pulsatile tinnitus is probably the most common in a dissection where one of the vessel walls ruptures. I'm just now changing health center and doctor and hope for better support than before.
You'll get more answers from others here later but Welcome here!

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chanda79 | @chanda79 | Jul 1 8:32pm

I didn’t know I had FMD until hospitalized for multiple strokes after chiropractor cracked my neck to alleviate headaches. The right half of my head is still numb.

Also didn’t know that most people do not have ringing in their ears. I thought the whooshing was normal too.

REPLY
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