I was diagnosed with MM on 1/14/05. The Angio showed the "Puff of Smoke" I have a 80% to 90% occlusion to the left artery, some of my vessel's are reversed, some of the flow is going backward in the brain. Have leisions also. Do still have symptoms of fatigue, some weakness and sometimes my speech is slow. More headaches. Take
Plavix 75 mg, crestor 5 mg  and the Dr. told me yesterday that the flow of blood was good, that I don't need surgery and also   my blocked artery is on the inside not the outside. Has anyone else been told that the blood flow is good. He said"The spect scan showed that" If bloodflow is good why the symptoms.? He said" It's like a sore muscle.          Thanks Lena [smiley=huh.gif] [smiley=huh.gif]

Lena,

If your angiogram shows the "puff of smoke" and an 80-90% occlusion in your left cerebral artery, I would strongly encourage you to contact one of the MM specialists talked about on this site ASAP!

MM is a progressive disease and even with the medication, chances are your symptoms will contine to get worse instead of staying the same (or getting better).  It's better to get an experienced opinion on your case before any serious or permanent damage is done.

Please feel free to contact me if you have any questions...

DJ

I dont understand the use of Plavix.  Plavix, if I understand correctly, is used to prevent blood platelets from sticking together thus preventing blood clots.  There is nothing blocking the blood from flowing (ie calciums or clots) than the sheer fact that your arteries are narrowing.  Does that make sense?  Could anyone that is currently taking Plavix explain this to me?? (I have to give my obvious disclaimer that I'm not a doctor but am just asking to better understand.)  Thanks!

-Shari

Hi Shari,

How I understand it is, as you said, plavix is a anticlotting medicine, (I’ve even heard it called the “super aspirin”) given to prevent a stroke, but whether it’s appropriate for a mm patient… well, IMO… given the controversy of this drug and whether any antiplatelet or anticoagulation agent should be pursed, given the abnormal, thin and weak arteries involved with mm, that’s where the mm specialist comes in. A “specialist is experienced in stroke management associated with mm. That’s one of the reason’s I emphasize a “specialist”, but I’ve read where Dr. Scott believes that the “sludgging” of the blood within the narrowed arteries at the base of the brain, is the cause of some of the strokes and TIA’s, but he, (being an expert) would know if plavix would be a good approach with mm, in each person’s individual case.

I hope I understood what you meant and that I made sense.

Mar

Hi Lena,

If you do have a 80% to 90% occlusion to the left artery, IMO… I couldn’t get to a mm specialist fast enough!! The way I’ve always understood it, not to frighten you, but that’s a walkin’, talkin’ time bomb waiting to explode. Please read all you can about moyamoya and you’ll find that no medications prevents the arterial narrowing process from progressing nor does it keep the moyamoya vessels from developing. This is very serious, and I too urge you to seek another opinion immediately from an experienced mm specialist.

Mar

Hia everyone,
I am an old friend of DJ's and was exposed to his diagnosois of Moyamoya when I got back in touch with him in July of last year. I am also a nurse so I take a medical interest in the information as well.

As far as your posts about Plavix goes, I work on an Ortho unit in a hospital where anticoagulation is a must, but from my experience as an RN Plavix is not always a good thing. It does interact with other meds and is often discontinued because of this. So being on it is not always a good thing.
My advice to riosdallas: take DJ's advice to contact one of the specialists at Stanford. 80-90% occlusion is BAD!!!! Trust me, you don't want to wait until the unthinkable happens! (and it's always unthinkable until it does happen).
Please, please, please, GO SEE  A SPECIALIST!
- Sharon

Hi Lena,
 Have you gone or talked to a moyamoya specialist yet.  Just wondering, I haven't seen anything that says you have yet.  That's the same message my son was given.  We sent all the films to Dr. Steinberg and he scheduled Mark within a month.  He also said after the surgery that it was worse than he thought which indicated it was more progressive and taking a wait and see wasn't the right approach.  I encourage you to get moving.
                              Ron