Hello all....i am new to the site...was just diagnosed with MM on 3/25/05.  Glad that this website is here!!!!!  Was wondering if anyone out there knows of any good neurologists for follow up in the DC/MD/VA area????? [smiley=huh.gif] [smiley=huh.gif]

Any info would be greatly appreciated!!!!

Thanks!!!!

If you don't mind going to Charlottesville, Virginia, I would recommend Dr. Neal Kassell at the University of Virginia Hospital.  He knows what moyamoya is and says he is good friends with Dr. Steinberg out of California at Stanford.  Dr. Steinberg is a moyamoya specialist.  

If you can't get there, then I would recommend Dr. Pamela Blake at Georgetown University Hospital.  She now knows what moyamoya is because of my case.  I don't think she is well versed on moyamoya though.  I will tell you that I don't think you should go see the neurosurgeon at Georgetown University Hospital.  His name is escaping me though.  

You might also try a neurologist at John Hopkins Hospital in Maryland.  I can't tell you if they have heard of moyamoya and if they haven't, then I wouldn't go there.  However, I do know that they are a top-notch hospital.  

Good luck and if you need any other help, please let me know.  I work in the DC area and live in Virginia.  I'll keep you in my prayers.

Michelle

When I was first diagnosed I was told to look at John's Hopkins as well....and like Michelle, the name of the doctor escapes me!  But I've done a bit of research...

http://www.neuro.jhmi.edu/cerebro/ci.html

**One note - they try to treat by medicine first - which many on this board, including me, don't agree with as this is a progressive disease.  I would listen to what Mar said below....


-Shari

[smiley=hiya.gif]

Welcome to our MM family. I’m sorry you had to find us, but you’ve come to the right place for not only information, but for support and friendship. These are the greatest bunch of people you’ll ever want to meet, who are willing to help you in any way they can.

If you don't mind my 2 cents, my first and most important advice to you is; if at all possible, please find a doctor with MM experience. We’re learning that some neurologists/neurosurgeons may know about moyamoya, but are not experienced enough with MM the disease, to make the decisions needed for a successful future with this disease. As you read here on this website, you’ll find that many have had to leave their state to find a MM specialist, unless as Michelle mentioned, you are fortunate enough to have a doctor experienced in your area. They’re far and few. Many mail their films to a MM specialist and get a second opinion to assure themselves they’re getting the correct prognosis.

My second piece of advice, and equally important, IMO, is to learn all you can about this disease. Read, Read, Read!! Then when a doctor does say something about your case, you’ll be able to make informative decisions confidently and know you’re on the road to a successful outcome. The more you know the better.

This website has links to MM medical information and links to finding a MM specialist, and we’re here to answer any and all the questions you may have, big or small, to the best of our knowledge and experience. We’ve all been down the road you’re traveling, one way or another. So please know you have friends to travel it with you.

You’re in my thoughts and prayers.

Mar

Wow!!!  Thanks for all the info.  I have spent what seems like days on the internet since being diagnosed!!!  How do you think I found this great place!!!????

I will keep in touch with everyone, better than i have so far, to let you know what is going on.  As for me, right now I am on the meds  :P!!!  Really think surgery is the way i need to go-want to have kids someday soon!!!!

Thanks again-and will keep in touch-

Jen

Hi Jen,  [smiley=wave.gif]

A few added thoughts… Certain medications can be very helpful in the treatment of the symptoms caused by moyamoya syndrome, but please keep in mind, that there are NO medications that prevent the arterial narrowing process from progressing or keep the moyamoya vessels from developing. Generally speaking, MM experts believe surgery is the main treatment when ever possible, because mm is a progressive disease.  

If you’ve read many of the past threads on here girlfriend, you found out that many are misdiagnosed with mm disease, or they've been told to wait until more symptoms develop and just put them on a blood thinning drug. Well, sadly, their doctors were wrong, with life changing results. Then it's too late. That’s why we emphasize a mm specialist, who has the experience with the disease and will know what approach or type of surgery that is best for your individual case.

I hope and pray you find a good mm experienced doctor to help you. You’re in our thoughts and prayers.

Keep us posted.

Mar