Fibromuscular Dysplasia

[Teechur]

So as I've mentioned in the past, I have had really bad headaches since my SAH in January. I am on my third neurologist who is also a headache specialist. I saw her on Tuesday for the first time and she was reading my files while I was in the room. She said "Do you remember being told you have Fibromuscular dysplasia?"

Uh. No. So she copied and pasted the notation from my angiogram. It said "Evidence of Fibromuscular Dysplasia in the internal carotid and vertebral arteries."

The new neuro was honest that she knows very little about it, but would follow up with my original neurosurgeon and find out if it's a mistake or what. The ONLY thing she said to me was "Don't freak yourself out, but we may have to discuss your activity level." She did say that as far as she could recall, it could weaken the vessels.

So of course I Googled it and freaked myself out. Anyone else have this diagnosis?

Here's what I found:

Fibromuscular Dysplasia, commonly called FMD, is a disease that causes one or more arteries in the body to have abnormal cell development in the artery wall. As a result, areas of narrowing (called stenosis), aneurysms, or tears (called dissections) may occur. If narrowing or a tear causes a decrease in blood flow through the artery, symptoms may result. Many people with FMD do not have any symptoms or signs on physical examination and are diagnosed by accident during a radiology scan for another problem.

FMD is most commonly found in the arteries that supply the kidneys with blood (renal arteries) and the arteries called the carotid and vertebral arteries which are found in the neck and supply the brain with blood. Less commonly, FMD affects the arteries in the abdomen (supplying the liver, spleen and intestines) and extremities (legs and arms). In more than one-half of people with this disease, there will be evidence of FMD in more than one artery. Source: http://www.fmdsa.org

On a more clinical site it did refer to sentinal bleed resulting in "the worst headache in the patient's life" being related to an aneurism due to the condition. It also said that though it can be asymptomatic, the symptoms in the head can include:

• Chronic headaches (check)
  
• Diziness/Vertigo (check, upon standing but part may be due to medication and to my low BP)
  
• Neck stiffness (check)
  
• Tinnitus (check)
  
• Vision disturbances (when my headaches are bad I can have a hard time with light, the reaction of my vision moving between close and far away things, say from cell phone to across the room is VERY long)
  

I'm pretty freaked out, and I'm also pretty angry. If it's an error (that's one thing new doc will find out) well damn! That's a big error. If it is NOT an error, holy cow why wasn't I informed of this?! At the VERY least I should have my other arteries checked. It would also explain the SAH, the ongoing headaches, etc. I just feel like my neurosurgeon felt it wasn't a big issue, but from EVERYTHING I find it is serious, there is no cure only treatment, and it can result in dissection or shearing of the arteries. I should never have deep muscle massage on my neck (I was referred for this by my new doc...I'm declining), go on roller coasters (sad), bungee jump (seriously, sad...something I've always wanted to do), no karate (sad, I planned to get back to it in January), skydiving (I've done that once, have wanted to do it again).

I've requested access to all my medical records, so hopefully that will shed a little more light.

Edited December 6, 2012 by Karen
Added Source/Author of quoted text http://www.fmdsa.org

[amexdm]

Hi Teech,

Sorry I don't know much about this condition but I did read about it online. I guess did it casue the SAH or is it an aftereffect or condition. Not sure. Could be the cause of your headaches. You definitely want copies of angiogram now.

I don't think it's good for any SAH'er to have neck massage. I would be afraid and I have heard that some neck massages could in a rare event cause a stroke. This was told to me by a massage therapist. I dont think I want my head jerked around any roller coasters although I used to enjoy them. But for a very active person like you Teech I get the concern as well as other activities.

Sure hope you get this straightened out, please let us know how it goes.

David

[kpaggett]

Teech,

I definitely found things that were discussed by the docs that never were told to me such as they found nodules in my thyroid on my CT scans and such. They put everything in the chart, but some of it never gets relayed. I did obtain my records so I could really review everything that was said. I did follow up on the nodules after that as you should follow up on the fibromuscular dysplasia.

I also attended a talk by one of the neurosurgeons here in MI and his area of research involved kidney and brain aneurysms how they often go together because of weakened vessels.

The only other thing to offer you is look at the positive...you actually might have a cause for your SAH and you may be able to actually treat your headaches with BP drugs like ACE inhibitors or receptor blockers etc... This could be the answer to your headaches! Although it is a new thing to wrap your mind around for sure. I really am with you on that.

Keep us posted.

~Kris

[Winb143]

I thought it was all part of healing after SAH as I have had headaches but not so bad on a good day.

I also get a click in neck when I move suddenly.

Dizziness , yes when I stand too quick. So stand and do not move in a hurry, was told that by Doc.

Vertigo I got when I put on ice skating boots for the first time. lol

Walking is a major problem with me ie back hurts real bad.

Be Well if possible

Love

Win xxxxxx

Forgot ~ I feel like I have a seashell against my ear, a non stop shhhhhing noise .

Edited December 8, 2012 by Winb143

[Sandi K]

Hi Teechur, I would imagine its almost a feeling of betrayal when you find out the docs didn't tell you everything. I got copies of my medical records and I'm so glad I did. Honestly, it took me a year to be well enough to google the medical terminology and really understand what it said! Once you've got your records you will feel more in control of the situation and as Kris suggests, it will be good to know so you can perhaps treat the never-ending headache.

Sandi K. Xoxoxo

[Teechur]

Well according to the doctor the headaches like I have should have stopped by now. I did call the new neurologist on Thursday because I was freaking myself out.

I could tell she hadn't talked to my original neurosurgeon because she said "I think she did not tell you because you don't need medicine for it." When I asked her what, if anything, should be done she said have an MRA in a year. I asked her about my activity level, since she'd brought it up...is it okay to keep running? She said "No. You need to stop running because you are getting to old for it anyhow. There are many ways to enjoy life so you need to find another, quieter way to enjoy life."

Uh...medical opinion or personal opinion?

So I asked if she felt the FMD might be causing the headaches and she said no, it's the running. Stop running and it will go away.

Wow! Like I haven't tried that! That must be the WHOLE answer!

I am not saying she doesn't know what she's talking about or that running isn't a good idea right now, I'm saying it sounded like she was grasping at straws and giving me a personal, not a medical opinion. Of course FMD is rare and I don't expect her to know it all, but is it too much to expect her to delve a little deeper? I even had to tell her that I wasn't going to do the deep tissue massage she referred me to because it's contra-indicated because the arteries with FMD can be weaker.

I did find a doctor who works with FMD that is about an hour from me. That clinic is requesting my records, and I got a referral started from my GP. I am less panicky than I was last week. I am assuming that because my NS is supposed to be one of the best, there was not a lot of concern. That's why she didn't tell me. I just don't like all the up in the air-ness about it! It's been almost 11 months since my SAH and I'm so ready for this all to be over. I'm glad I know, I just want a more definitive answer.

And, btw, I am not running until I talk to the vascular specialist. I agree that with the knowledge I have it's best to not do anything that might be a bad idea. I can't accept the "You're too old" business. Speaking of business...this is my BUSINESS. I am a running coach, I teach bootcamp, my job is to help others find their athletic potential and I pray that this won't be the end of that.

Anyhow.

[Sandi K]

People run at all ages, well into their later years. I have a hard time with that one too. It would make more sense if it was directly tied to the FMD but to just be 'too old for it anyhow' sounds a bit out of whack.

Glad to hear you've found an FMD doc. Things will hopefully start making sense when you see that doc.

Sandi K.

[Macca]

Hi Teechur,

Not spoken to you for a while! I'm glad you appear to have found someone who knows about your condition. There are that many different types of doctor and hardly any of them will admit to not knowing something! Sometimes these guys can be more dangerous with what they don't know rather than with what they do know! The problem is we don't usually realise until it's too late! I'm sure they don't mean any harm! I'm glad to see you in fighting spirit and not just accepting what they say because they are a doctor - you know your body best - keep going until you are satisfied you are getting the right advice and if that means shopping around then so be it. I wish you the best of luck! keep us posted as to your progress!!

Best wishes

Macca

[kpaggett]

Yes, Running and being very active has been a huge part of your life...your self identity and to have someone just act like it's no big deal! Wow, how maddening. I really do hope it won't be contraindicated for you, but I'm so glad you're taking this new piece of information seriously and cutting back on the activity levels in your life until you know for sure. Keep us informed because we all KNOW what this could mean in your life if you have to give it up. Hang in there for the answers from the best.

~Kris

[Teechur]

I have seen a vascular specialist who is knowledgeable about FMD. He told me at my first appointment that it was highly likely that it was a misdiagnosis, since the condition is very rare.

Friday I had a full body ultrasound. The good news is they did not find any evidence of FMD in my other arteries. No such luck on the misdiagnosis, though. It's there in my vertebral and carotid arteries.

I see the doctor again on Monday to find out what it all means. I truly pray it is the answer to my headaches. The tech told me what she found and I'm so thankful that was allowed. I hate getting tests then having to wait!

I am hoping that it's going to be a situation where I have to get scans once a year. It is not curable but in some situations it doesn't get any worse. Hope that will be the case!

[amexdm]

I have seen a vascular specialist who is knowledgeable about FMD. He told me at my first appointment that it was highly likely that it was a misdiagnosis, since the condition is very rare.

Friday I had a full body ultrasound. The good news is they did not find any evidence of FMD in my other arteries. No such luck on the misdiagnosis, though. It's there in my vertebral and carotid arteries.

I see the doctor again on Monday to find out what it all means. I truly pray it is the answer to my headaches. The tech told me what she found and I'm so thankful that was allowed. I hate getting tests then having to wait!

I am hoping that it's going to be a situation where I have to get scans once a year. It is not curable but in some situations it doesn't get any worse. Hope that will be the case!

Teech,

So does this mean you're cleared for all physical activity now?

David