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Meetings and Gatherings >> Local Meetings and Gatherings >> Just found out/ SCARED in WI
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Message started by firefli66 on Oct 11th, 2006 at 2:48pm

Title: Just found out/ SCARED in WI
Post by firefli66 on Oct 11th, 2006 at 2:48pm
HELP  I don't know what to do.  I am 28 years old and just found out I have the disease.  I am from WI and am see a doctor from Northwestern and he said I have to have the surgery but no hurry.  If this is true then why do I need the surgery.  Can any  help me and tell me what is going to happen to me.  Thanks

Title: Re: Just found out/ SCARED in WI
Post by Mar on Oct 11th, 2006 at 4:51pm
Hi firefli66, [smiley=wave.gif] Welcome to our MM family!

The first thing you should do IMO, is learn all you can about this disease. It will help you feel more confident about the decisions youíre about to make. I'm sorry to hear you've been diagnosed with MMD, but you've come to a great place for support and information.

I donít know how much you know about MM, so Iíll start by saying, MMD is a progressive narrowing of the blood vessels to your brain, so your brain does not get the proper blood and oxygen it so desperately needs, but whatís amazing is, over time, your brain grows itís own blood vessels, to try and get the proper blood flow to it. These are the MM vessels they see on the Angiogram, (Puff of smoke) and how they diagnose that you have MMD. BUT these are abnormal MM vessels, and although they are supplying blood temporarily to your brain, they are weak and fragile vessels and they can rupture or bleed, which can cause a stroke. That is why surgery is so important. Simply put, the surgeries for MMD ďbypassĒ the blockage to get the proper blood flow to the brain and therefore reduce the risk of a stroke. MMD is a progressive disease and delay in treatment (surgery) could allow unnecessary progression of this disease which puts you at a higher risk for a stroke.

Itís very important that your doctor have experience in treating MMD, to know if it IS in fact safe to wait for the surgery. Weíve seen medical professionals that do not have enough experience treating this rare disease, so they advise their patient to wait, and end up suffering a stroke. My niece was 20 years old and ended up having 4 strokes that left her in a coma and paralyzed. I don't want to see that happen to anyone. Please don't get me wrong, I donít know your specifics or if you are having stroke symptoms, Iím simply saying please do not delay treating this disease.

I understand how overwhelming all of this information can be when you're first diagnosed, but thatís why itís important to learn all you can about it. Please feel free to ask any questions you need to. We are like family here and will help you in any way we can.

Mar

Title: Re: Just found out/ SCARED in WI
Post by lotsofkids on Oct 12th, 2006 at 3:48pm
I'm so sorry to hear that you have this dx.....but glad you found your way over here!  I was just dx'ed mid July and completed both bypass surgeries the end of August. I was 100% occluded in both coratids. Luckily, I had developed a lot of collaterals to keep me functioning! LOL

Anyhow, MM is a very intimidating diagnosis...but at least there is a treatment.... surgery. This site is very informative as well as supportive and encouraging in the fact that many people here are post surgery and doing quite well.

If you want you can look up some of my original posts to follow my recent surgery and get an idea of what went on during those colorful days!

On the Daily Jibber Jabber page look under:

Flying out to Stanford, 1st surgery on Fri 8/25

and if you want a little idea of my original bio when and how they discovered my MM

you can go to the page:
"Moyamoya Related Information and Support"
look under:
Newly dx'd w/ moyamoya...Oh boya boya!

Sorry. I am getting really laid back (at typing) now that I finished surgery....hey if you have ANY questions or fears....feel free to Private Message me and I will be happy to try and put you at ease.


Boy, it seems.....I am self promoting my MM story!!! (everyone here has one too) Hmmm.....will it bring me fame and fortune? Probably not.....but I hope it brings you a little humor and a sense of "not" being alone in this scary process.


Smiles.....Diane : )

Title: Re: Just found out/ SCARED in WI
Post by susan on Oct 22nd, 2007 at 11:24pm
::) "spells" are getting worse.  Getting so worn out from all of them.. TIA's everyday now.. and increasing on some days.  Got in touch with Dr Steinberg/Stanford Hosp about reviewing my case.. WOW! He emailed me within 20 mins with instructions of what to send to him.  Now just a waiting game for the Dr's to order the MRI's & MRA's to send him the films.. Hoping that BC/BS isn't going to give me a hard time about wanting the surgery out in Cali.

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