:-/  I have just been diagnosed with a 3.2 Cm AVM.  10 days later during an attempt at the repair procedure the angiogram showed MoyaMoya.  Needless to say the procedure was canceled.  They are thinking the MoyaMoya was caused by the AVM.  I can't find any reports of this occuring before.  Which one is the most important to correct first?  
I have an excellant doctor and he is now in the process of sending my data out to other doctors that specialize in radiosurgery as he only recommends this procedure.
I was told I may have to live with it but that idea sure scares the heck out of me.  Newly wed, newly retired and just beginning to live my life.  I thought.

Hi Cathy,

Welcome to our MM family! [smiley=wave.gif]

I wish I could answer your question for you, but without knowing your specifics, I don’t think anyone could answer which was more important. There are too many factors involved. Plus, we see misdiagnosed new members all the time, so we wouldn’t know if that was the case or not. I know very little about AVM, but I do know that I’ve talked with many here who were misdiagnosed, and their doctors who were not familiar with MMD simply said they had vascular lesions, such as with AVM and they were told they had to live with it and sadly they stroked or hemorrhaged. So that’s touchy when giving advice, but I do know MM should be treated promptly. MM is a progressive disease and you’re always at risk for a stroke.

So my advice to you would be, if you were diagnosed with MM, get a neurosurgeon with MM experience ASAP!! That’s vital! You may have a wonderful doctor but if he’s not familiar with MMD, it could be a deadly path. That’s the particular pitfall we see often. MMD is definitely a treatable disease IF the proper approach is taken. A MM specialist would know the best path for your particular case, he deals with MM on a daily basis, not a doctor that specializes in radiosurgery. The fact that they said MM was caused by AVM scares me because no one knows what causes MM.

There is a wealth of knowledge here on this website. Learn all you can. If you arm yourself with knowledge, you’ll feel much more confident in your decisions once you learn the facts of this disease.

You’re not alone. You have many wonderful people here who will help you in any way they can.

Keeping you in my thoughts and prayers!

Mar

Thanks Mar,  I will double check on this thanks to your advise and they are sending me on to see more specialist.  My doctor was the first to admit he didn't know what to do with me.  He didn't play cowboy  and use me as a test pattern.   :-/