Just trying to find others with same disease and to hear about how they are coping.I have FMD of carotid s was diagnosed after left carotid artery dissected. Now on coumadin, topamax and toporal. Headaches seem to be comming back. Neuro not really sure on what comes next.What treatments /tests have others been through.
Is your Dr familiar with FMD? he should listen for bruits over both catotids, messenteric, and kidneys. FMD can progress to other areas. It does not spread but worsens or gets better in other areas.
I had aneurysms develop after my diagnosis and they did brain surgery. I have not had headache in 5 years. I would start with a contrast scan of brain and listening for bruits. I am on 3 meds for blood pressure. I was told that when my BP goes higher on 3 meds then My kidneys(renals) are probably getting more affected.
I am not a medical person but I would not ignore the headaches. It could be migraines, sinus or allergies but you need to know. If you are given migraine meds then make sure your Dr knows how they will affect your blood vessels.
Hi Malva thanks for responding. my neuro has not seen many cases of fmd here in S Florida so see had found a neuro science group for me to see in miami ( a few hours away ). They are still going over all of my films and angiogram.I’ve had about 3 mra with contrast done at the hospital that treated me.The headaches do make me nervouse I almost feel like I’m being a hypochondriac but butter to get it checked out…hhhhhhhhhh. I know that I can’t take any magraine med like I used to (imitrex) Dr. just added low does of toprol but I don’t notice any difference and the last 4 day’s my bp has been on the high side. so hopefully today I will get so,e answers. well better go and get ready.Thanks again for writing back!
Lucy
I am ADK. I had an acute TIA following a two day headache, with severe neck pain. I learned that I had FMD in both vertabratal arteries. My internist and nuero say the FMD was not the cause of the TIA ,althoug no cause has been found. I have no risk factors for a TIA. Also, last week I had a CTA of the renal arteries with no FMd found. I am taking 20mg of stain, although my colestrol is 109, and a asprin. Has any one else had an experience like this?
My cardiologist and cardiovascular surgeon said it wasnt the cause of my headaches either, but I know better.
I had bruits in both ears for about a year. I told every one I knew. I had an angiogram and was waiting to hear from the doc, then i got the headache. It was the worst pain of my life. I could not move my head. it felt like my head was being pulled down into my shoulders. My neck and shoulders hurt too. My left leg was numb from the knee down to the top of my foot. Not the whole leg just the outer part, it was like I had lost some of the sensation. I went to the ER with my headache, the ER doc said I had a sinus infection. HAA what an idiot. When I got back home I had a card from my cardiosurgeon for me to have surgery. I have had bilateral carotid endarterectomy. I can still hear a bruit on the left side. Doc said that is normal sometimes.??? I dont think they got it all, . My docs said that FMD did not cause headache. I know it did. It took 2 months for the headache to go away totally. It hurt to even comb my hair. My head was sore to touch. When they were putting wires on my head before surgery I was never so glad for the tech to get done. It hurt for her to even touch my head. The pain also seemed to switch back and forth from side to side, throbbing, pulsing.? I dont know what that was either. It was like the trobbing would go back and forth. The pain was like some one had a knife in my head. Dont ever let a doc tell you that FMD cannot cause a headache.
Since we have a somewhat rare disorder (or one that most Drs do not seem to know) we must be sure to get second opinions. Write fmdsa.org and get a name for someone in your area who knows FMD. You may have to travel for a few hours but it may save your life. Once you see an expert then have them send an email to your local Dr. The expert can explain how FMD causes TIAs.
When I was first diagnosed, I learned that FMD may affect the heart. I went to a cardiologist and asked to be checked. He was arrogant and asked why would I want to be checked with no symptoms. I quickly answered that I have mammograms every year but I do not think I have breast cancer. I simply wanted to rule out problems before something happened. I changed heart Drs too. They did find a problem and now I get checked every 6 months for preventative measures.
We have to take care of ourselves. We are the pioneers. We did not die with our first encounters so we are here to fight for the next generation. On my last hospital visit- I met a group of medical students. They came into my room. I had them listen to my bruits and talked to them about it. They did not have a clue about FMD and that was our new batch of Drs. I hope whereever they go- they will remember what I told them. The lead Dr made a comment about informed patients. I laughed and said it was obvious that I had to take care of myself. He told them to always listen when the patient seemed informed.
Hi: I’m really bad about checking in with the boards and my e-mail, so I
just saw your message. I am a female, 36, and had three dissections last
year in November following a chiropractor visit- both carotid arteries and
one vertebral artery. Doctors said they’d never seen anything like it. My
left carotid was 100% blocked and right was 60% blocked. Thankfully, the
vertebral dissection was mild.
I am on Coumadin and Crestor and baby aspirin. My cholesterol was a bit
elevated (113 LDL) so the doctors weren’t taking any chances and put me on
Crestor so that the cholesterol wouldn’t harden in the weak spots of my
dissected arteries. I go next month for a cholesterol check up.
The pain from the dissections takes a while (2-3 months) to fully go away.
The muscles in my neck and shoulder were all screwed up from being in so
much pain during the dissections, and a muscle relaxer helped that. I cut
out all caffeine, carbonated sodas, alcohol, chocolate, high-salt foods and
most sweets - all the good things in life, right? - and amazingly my
headaches have all but disappeared. I used to have daily headaches and now
they are rare.
If you are still having headaches, have your doctor do an MRI of the spine
to check for any sort of bulging or herniated disks. These sort of problems
are easily overlooked when you have such a serious condition as carotid
dissections, but herniated disks can cause major pain and it’s hard to
distinguish this pain from dissection pain.
If you’re newly diagnosed, it’s very scary. But it’s been six months for me
and I’m feeling better than I ever thought I’d feel again. Take care of
yourself and please reach out to the group if you are feeling overwhelmed or
need to talk. The groups have been an amazing comfort to me since my
diagnosis.
Take care – Dusti
-----Original Message-----
From: planetlucy [mailto:fmd-cpt4186@lists.careplace.com]
Sent: Sunday, June 10, 2007 4:49 PM
To: dustiplunkett@comcast.net
Subject: [fmd] treatments
Melva,
Thanks for your encouragement. I have been approved for the NIH
longitudinal study. Have sent in my blood sample, and will await for a date
for onsight study in Baltimore, probaly firtst of next year,2008.
AKD
----- Original Message -----
From: “Melva” fmd-cpt4186@lists.careplace.com
To: akarmon@charter.net
Sent: Tuesday, June 12, 2007 7:41 AM
Subject: Re: [fmd] treatments