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Unregistered User
(12/11/02 11:35 pm)
Maryland -- FMD

I have not posted my status in the board for many of the new visitors to know. I supose it has to do with my dealing with FMD and its accomapanying group, silently, and spending my time thinking of solutions. So here it is, in brief.

I was not sick very often, in great physical shape, and traveled quite a bit in a wonderful job for the federal government. Then the headaches started and the pain in my back. After a year of this, I changed doctors, insisted on an brain MRI, and on April 10, 2001, my life changed.

The doctors found that I had a 10mm aneurysm about to burst in the left opthalmic artery, but the "thing" grew a bubble above it, another 4mm instead. So, they clipped the 4mm and coiled the 10mm. There is another one in the making but to small to deal with at the moment. The clipped was through surgery and the coiled through the groin. I had a stroke at this time so part of the brain matter is dead. Memory and cognitive problems are with me now. At times I cant deal with many things at once. I lost sight in part of the left eye.

On the right side there is another aneurysm. Its 5mm and holding steady. We check on that one every six months. It appears that the AMA now feels that aneurysms that small dont usually burst. If it does, we will have 20 minutes of life. If they coil it, I might lose sight in the right eye.

This is when they found out about FMD in the carotids and the iliac. Also, 60% of the kidney artery was closed. Procedures to the kidney addressed that part and the docs found multiple mini aneurysms there. The carotid's as of last check at 60-70% to the left and 50-60% to the right. The iliac, well, it is there.

After all this, diabetes also joined the party.

God has a plan, and as I told a friend tonight, part of it has been to meet people like you. Oh, to my family's knowledge, nobody in my family has ever had FMD. All the women have died of natural causes beyond 75 (mostly in their 80's and great-grandmother at 114). I have one daughter and two grandaughters...part of the plan is that they wont have to deal with FMD...I know, God told me. <smile>


Unregistered User
(6/26/03 12:18 am)
I think that is how we all feel
Part of the problem is here is a disease that no one wants to study. Yes we want to study it but where are the people who study the cancers and where are the people who study aides. I just sang for relay to life and I would gladly sing for any cause that comes my way but I hope one day a cause for FMD survivors will come along soon because when that day comes I am singing for it. We have alot of problems and it sounds like you have had and still have more than your fair share of worries. I am only 32 and I have it bilaterally in my renal arteries and now they say they think it is in my arteries in my legs. I read a different area which leads me to believe that all the sinus problems and eye problems and earaches I have been having the last 9 months are going to be the neck arteries. I hope that things get better for you and I am praying everyday that someone will hear our pleas and get this moving and find a cure. arabbella

Unregistered User
(7/21/03 1:11 am)
Your diagnosis
I hope not Arabella, I hope the sinus issues are not FMD related. Consider the common items first.

What you are doing right now is healthy, talk about how you feel, what you think is happening. Particularly because your diagnosis is recent. Dont hang on to the stress of FMD.

As you read, I was diagnosed in April 2001. Sometimes, when my back hurts, I wonder, is it FMD or is it my back? The pain is severe and I address it by having FMD tests every 6 months. Nobody wants to do anything about my back anyway, lol. What I try not do is feel the fear that accompanies every painful moment or thought about FMD. How about you? How are you doing?

Registered User
(11/25/03 11:33 am)
don't ignore back pain-
just read your message- hope your back pain went away if not there is a mri angio now, that will show if there is narrowing of your arteries-have it done--FMD can advance in as little as 3-4 months-not 6 mos. i agree we need a national organization if i can be of service with this i will help..God Bless-Ruthie

Unregistered User
(11/29/03 11:44 pm)
MRI Angio
Can you tell me more about this? The back pain is the entire back, and when it hurts, it hurts bad! Have you had this done?

(12/1/03 11:18 am)
Re: MRI Angio
yes, I have had a heck of alot done-the MRI/MRA angio is done basically like a regular MRI--make sure the place where you have it done has the right configurations in their MRI/MRA machine.some machines are not set up for it yet, depends on what hospital you go to. it can find a problem then if further investagation is needed a intervenous diagnostic angiogram should be done.i had pain in my whole back and it showed 20% renal narrowing both sides--but i had butthead docs that didn't follow up but I now have new docs!!! having an intervenous angiogram since the pain has gotten worst and have other sites that need to be addressed as well---so my best advise is @#%$ @#%$ @#%$ til they do listen!
god bless-I was one of the first doz to have the rare upper corotids both sides fixed @the Mayo in Rochester(1999)-that place is extrodinary hey?--God Bless-Ruthie

Unregistered User
(12/7/03 10:53 pm)
renal angioplasty
Hi Ruthie and Celeste,
Bertha in Indiana checking in. I agree, don't ignore any symptoms. What we have is still just "unusal" enough that docs are still learning about it themselves.
I just had renal angio of the right kidney. Left one looks OK for now, but the doc will check every six months. Meanwhile, back in the carotids, right side is now app 70% blocked so I'm on hold while my docs confer to see where we go form here. Angio of the carotids confirmed fmd in both carotids and the vertebrals. Naturally, its up high in the brain where plasty and stenting is fiy. Oh yes, stenting in my renals is out of the question, too, because of where its located. Are we having fun yet?
I feel basically good except for an occassional migraine. That's good and bad because symptoms help you to know when something is not quite right and I don't always have symptoms.
God is still in the blessing business and Ii'm looking forward to a joyous and uncomplicated Christmas season.
Happy Holidays to all. May the New Year hold Joy, Peace, and Wellness for us all.

God Bless,

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