Fibromuscular Displasia?

[knitgrl]

My sil was just diagnosed with fibromuscular displasia. She has suffered with tinnitus for a year, was just tested and they discovered the FMD. She is going to see a an FMD specialist later today and was wondering what questions she should ask. For all medical things now, I look to see what the hive has to say, and from old posts, I see that @Indigo Blue might possibly have some insight.

[City Mouse]

My sister has that. It was discovered when she was a young teenager and had super high blood pressure due to blood vessel that was becomeing restricted. Then, and another 1 or 2 times over the past 40 years, she has had to undergo a procedure where a balloon is inserted through (I think from the groin area) the blood vessels to the blockage and used to expand the restricted vessel.  Other than monitoring her blood pressure regularly, she has had no other restrictions or problems.

[knitgrl]

Thank you. That is good to hear. Sil tends to be an anxious sort of person, so knowing it hasn't caused any major problems for your sister will hopefully be comforting for her.

[Indigo Blue]

Yes, I have that. It’s in my renal and carotid arteries. She should be advised to take a daily aspirin. (Or every other day). 
 

FMD is very, very, rarely fatal. She just needs to get arteries scanned yearly or as often as advised. Definitely see the FMD specialist. They may advise a scan from the neck up to rule out aneurysms, which can occur simultaneously with FMD. FMD is hereditary. It is most commonly diagnosed in youngish females. 
 

It is not plaque. It’s just abnormal “beading” in the artery walls that cause restriction. If there are complications (dissections, etc.) it is very important to get care from an FMD specialist, maybe in conjunction with a neurosurgeon because deciding whether to stint (again, if there are complications) is entirely different from deciding if or when to stint due to plaque. 
 

I was diagnosed in my forties when I developed a whooshing sound in my head. It’s not tinnitus. I can just hear the blood whooshing because it’s like a kinked garden hose…that’s creating a whooshing noise. This is a common symptom. 
 

I have been advised not to lift heavy objects or do anything where I don’t have control over my neck and head, such as riding roller coasters. 
 

FMD is fairly uncommon or rare. The most common complication is high blood pressure due to the kinking and beading which causes constriction, leading to high blood pressure. Also common are headaches. 
 

I’m very lucky that my beading doesn’t cause enough constriction to cause high blood pressure. 
 

If you have high blood pressure, then an attempt is made to treat with medication. If this fails, it must be decided whether to stint. Again, this decision needs to be made by someone very competent in treating FMD. 
 

If FMD is found in carotids, then renals should automatically be ultrasound or scanned by someone who knows how to do these scans in someone with FMD! For example, the beading in carotids is usually located up much higher in the carotids than plaques. Since FMD is rare, most regular ultrasound techs will not be trained to find it properly. If beading is in the neck, lots of times it’s in the renals, too. You just need someone with expertise to get it properly ruled in or out. The techs in the office of the FMD specialist will have the expertise. 
 

If she has been diagnosed and does not have blood pressure issues, it is possible that she may never. It isn’t thought to progress or spread, but it should still be monitored. 
 

I hope this helps. I remember how terrified I was when I was diagnosed. I went to a regular cardiologist because of the whooshing and they sent me a letter in the mail showing all these blockages in my carotids in percentages. Like 40 percent in one and higher in another. They said it was due to plaque and they would just like to continue to monitor that. 
 

I was mid forties, a 105 lb vegetarian with absolutely no other health issues. It scared me half to death. I started looking stuff up and found out about FMD. I looked for all possible causes for whooshing sounds in the ears and came up with FMD. I mentioned it to the cardiologist. He dismissed that straightaway, then later agreed to a scan with contrast. The radiologist subsequently reported back to the cardiologist that it was FMD. THEN I looked for a specialist to check the renals. 
 

She may consider a medical bracelet with name of diagnosis and name and number of specialist, too. 
 

How is she doing?
 

 

Edited May 29 by Indigo Blue

[knitgrl]

Thank you so much for all the info! I will pass it on to her.

I think her appointment was late this afternoon, as I bumped into my other sil who had just picked up her daughter. She has been texting dh about it, so I won't probably hear anything until later this evening.

[Indigo Blue]

There is a forum if she’s interested.
 

There are a lot of posts with people who are having bad complications. Just be aware. But there are many people who never do. In fact, there have been female (mostly) kidney donors, who, upon death, were rejected because they had FMD. They won’t accept kidneys with renal artery beading. The deceased had FMD their entire life and they never knew and had never been diagnosed! That’s why there is speculation that it may be more common than originally believed. 
 

I was just a bit concerned it might be a bit anxiety inducing right now, but maybe at some point she may want or need to read there. 

https://www.inspire.com/groups/fibromuscular-dysplasia-society-of-america/

 

It is a good forum to read for educational purposes and to join and ask questions. Just know that these are patients and information is not coming from doctors. However, there are a few very knowledgeable people on there. Once you visit there enough, you learn who they are. There is a lot of good information there, keeping this in mind. 

[knitgrl]

An "ultra-cautious" CAT technician diagnosed her at first. Today, an ultrasound tech and vascular surgeon said everything looks normal, so apparently she doesn't have it. Though they haven't figured out the cause of her tinnitus.

I thought technicians weren't supposed to give any type of input to patients about what they see, unless it's something like they're checking for cancer and can say, "This looks totally normal."

Thank you for taking the time to share so much info. Perhaps it will help someone else looking for it in the future.

 

[Indigo Blue]

Oh, wow. Well, that’s good news. She must be relieved. I hope she figures out the cause of her tinnitus.