1. < Stroke & Cerebrovascular Diseases

Fibromuscular Dysplasia and Brain Aneurysms

Posted by Kari Ulrich, Alumna Mentor @kariulrich, Apr 3, 2017

I wanted to share a video a friend of mine made about her journey with FMD. She gave me permission to share: https://www.youtube.com/embed/YB2p_BkgcZY
It was inspirational to me, and it may help others.
Thanks!

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iagrrl | @iagrrl | Apr 27, 2017

I hope your friend is doing well, very proactive and generous of her to make the video. I was just diagnosed with FMD; left carotid and both renal arteries are involved. No real symptoms, except for the whooshing in my ears. The bruits were found during a routine physical. I have to come back to Mayo in 2 years to have another MRA, in the meantime I am trying to learn as much as I can about FMD, taking aspirin, eating a plant based diet and exercising.My question is, who are the Drs. at Mayo that have an interest in and treat those of us with FMD? My local dr was in a hurry to get me into Mayo so my appointment was with a vascular doctor who had the first available appointment.

REPLY
1 reply
Kari Ulrich, Alumna Mentor | @kariulrich | Apr 27, 2017
In reply to @iagrrl "I hope your friend is doing well, very proactive and generous of her to make the..." + (show)
@iagrrl

I hope your friend is doing well, very proactive and generous of her to make the video. I was just diagnosed with FMD; left carotid and both renal arteries are involved. No real symptoms, except for the whooshing in my ears. The bruits were found during a routine physical. I have to come back to Mayo in 2 years to have another MRA, in the meantime I am trying to learn as much as I can about FMD, taking aspirin, eating a plant based diet and exercising.My question is, who are the Drs. at Mayo that have an interest in and treat those of us with FMD? My local dr was in a hurry to get me into Mayo so my appointment was with a vascular doctor who had the first available appointment.

Jump to this post

Hi @iagrrl! So very nice to meet you and welcome to the FMD family! How are you feeling? I have found with FMD that the more you learn about the disease you will find your self saying... oh I can relate to that! Do you have any fatigue? Or joint problems? Some of us have overlapping connective tissue problems. My friend is doing well, thank you for asking. I know there is a new doctor at Mayo Vascular that is interested in FMD patients, but I cannot recall his name. I will do some digging and see if I can figure out who it is. I see Dr. Thom Rooke in vascular. Dr. Gustavo Oderich for vascular surgery and Dr. Robert Brown for neurology. With finding a doctor, find one who is knowledgeable in the area, but most importantly one that you connect with. Everyone has different personalities and finding a doctor that you can communicate with is so important. I have been diagnosed with FMD since 2004... if I remember correctly lol! It has been a while. I believe all the vascular doctors at Mayo Rochester are very familiar with FMD and will be helpful. Not every speciality is familiar with FMD, so keep that in mind if you are sent to GI or another speciality. The swooshing in the ears can drive you crazy at times! I have that too. Will you be going to Mayo Rochester?

REPLY
2 replies
geechiegal | @geechiegal | Sep 7, 2023
In reply to @kariulrich "Hi @iagrrl! So very nice to meet you and welcome to the FMD family! How are..." + (show)
@kariulrich

Hi @iagrrl! So very nice to meet you and welcome to the FMD family! How are you feeling? I have found with FMD that the more you learn about the disease you will find your self saying... oh I can relate to that! Do you have any fatigue? Or joint problems? Some of us have overlapping connective tissue problems. My friend is doing well, thank you for asking. I know there is a new doctor at Mayo Vascular that is interested in FMD patients, but I cannot recall his name. I will do some digging and see if I can figure out who it is. I see Dr. Thom Rooke in vascular. Dr. Gustavo Oderich for vascular surgery and Dr. Robert Brown for neurology. With finding a doctor, find one who is knowledgeable in the area, but most importantly one that you connect with. Everyone has different personalities and finding a doctor that you can communicate with is so important. I have been diagnosed with FMD since 2004... if I remember correctly lol! It has been a while. I believe all the vascular doctors at Mayo Rochester are very familiar with FMD and will be helpful. Not every speciality is familiar with FMD, so keep that in mind if you are sent to GI or another speciality. The swooshing in the ears can drive you crazy at times! I have that too. Will you be going to Mayo Rochester?

Jump to this post

I just was diagnosed with FMD of renal artery after a CT for something else. Awaiting results of additional CT if head and neck. I live in Rochester and have a consult in Vascular Medicine in October. No symptoms other than my lifetime ones of fatigue, anxiety, tinnitus. I’ve researched everything I can online. Scary as it’s considered rare. It helps to talk with people who have it. Thanks for sharing h.

REPLY
1 reply
ellerchim | @ellerchim | Sep 8, 2023
In reply to @geechiegal "I just was diagnosed with FMD of renal artery after a CT for something else. Awaiting..." + (show)
@geechiegal

I just was diagnosed with FMD of renal artery after a CT for something else. Awaiting results of additional CT if head and neck. I live in Rochester and have a consult in Vascular Medicine in October. No symptoms other than my lifetime ones of fatigue, anxiety, tinnitus. I’ve researched everything I can online. Scary as it’s considered rare. It helps to talk with people who have it. Thanks for sharing h.

Jump to this post

I have the very early signs of it when I went into the hospital for a stroke but no one seem too concerned about it including this cardiologist I saw. My search goes on.

REPLY
geechiegal | @geechiegal | Sep 8, 2023

I hear you ! It’s frustrating to have something rare that is not being backed with funds for research to figure it out. It seems it’s a watch and see disease with a lot of unknowns. Thanks for responding as somehow it helps to feel less alone with this rare disease. Blessings to you on your search for answers and best approaches to your health journey 🙂

REPLY
queenkeb | @queenkeb | Apr 29 10:01pm
In reply to @kariulrich "Hi @iagrrl! So very nice to meet you and welcome to the FMD family! How are..." + (show)
@kariulrich

Hi @iagrrl! So very nice to meet you and welcome to the FMD family! How are you feeling? I have found with FMD that the more you learn about the disease you will find your self saying... oh I can relate to that! Do you have any fatigue? Or joint problems? Some of us have overlapping connective tissue problems. My friend is doing well, thank you for asking. I know there is a new doctor at Mayo Vascular that is interested in FMD patients, but I cannot recall his name. I will do some digging and see if I can figure out who it is. I see Dr. Thom Rooke in vascular. Dr. Gustavo Oderich for vascular surgery and Dr. Robert Brown for neurology. With finding a doctor, find one who is knowledgeable in the area, but most importantly one that you connect with. Everyone has different personalities and finding a doctor that you can communicate with is so important. I have been diagnosed with FMD since 2004... if I remember correctly lol! It has been a while. I believe all the vascular doctors at Mayo Rochester are very familiar with FMD and will be helpful. Not every speciality is familiar with FMD, so keep that in mind if you are sent to GI or another speciality. The swooshing in the ears can drive you crazy at times! I have that too. Will you be going to Mayo Rochester?

Jump to this post

Hi, I’m QueenKEB
I believe my Doctor diagnosed me with FMD by way of CTA.
But she haven’t really heard of it!
So she is putting me on a statin and referring me to Vascular.
I am scared and symptoms are swooshing in ear and pain in neck laterally. Lots of aucilar migraines with blurred vision.
Does this sound like something anyone has had?

REPLY
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