Hi everybody, I was recently diagnosed with MM.  I have sent my CT-a etc. to Stanford - just waiting on them.

I was diagnosed by Dr. Harrigan of the University of Alabama Birmingham (He's a partner of Dr. Fisher)  Anybody every heard of Dr. Harrigan?

Anyways look forward to talking to anybody . . .

Parker

Hi Parker

Welcome to the moyamoya family.

Sorry we have to meet this way but you have come to the right place to ask questions and get educated about moyamoya. There is a wealth of information under the moyamoya related topics thread as well as resources and physicians. Just ask questions as someone on the board has more than likely experienced the same or similar thing. 

My brother Kevin, (Cubbie) has MM and we sent his films to Dr. Steinberg at Stanford and received a response in just a few days. Dr. Steinberg is one of two MM specialist in the U.S. Kevin had two direct bypasses this May at Stanford by Dr. Steinberg. Prior to the surgeries, Kevin had gone mis-diagnosed and undiagnosed for 4 years and had a significant stroke. It took several neuro's, vascular docs and radiologist to finally give a diagnosis of MM and then they sent Kevin home to live out whatever life he had left. Of course, I refused to allow such a thing. We found moyamoya.com and that's how we found Dr. Steinberg and we are eternally grateful to Dr. Steinberg, Teresa and the Stanford team for not only saving Kevin's life but giving him hope when no one else would give him the time of day.  We are grateful to DJ for providing this magnificent site. Without moyamoya.com we may never have found our way to Stanford.

I'm interested in your story and what your symptoms are and how you came to be diagnosed with MM.

Look forward to hearing more about you and your MM.

Lore 

Hi Parker
…and the rest of you online!

You’re doing the right thing by going to Stanford!  I was diagnosed with MM in August and just had my surgery at the end of September at Stanford.  I think Dr. Steinberg and the entire staff at Stanford is great.

I remember how confusing and emotional it can be when you are initially diagnosed but believe me, the surgery is not as bad as it seems.  I had 5 strokes and quite a few TIA’s between Aug to Sept so having the surgery was a huge relief.  Everyone recovers at a different rate but I was back to work 3 weeks after getting out of the hospital.  If you have any questions or just want to talk about how you feel, don’t hesitate to send me an email.  I know it must be hard for you right now but talking to people on this site helped me tremendously!  It’s nice to talk to people that have been through it or people who have loved ones that have been through MM…so really, don’t hesitate to ask questions.

Monica 

Hi Parker,

You sent your CT to the right place. I had MM sugery in June and just got my 5 month follow up. I'm not out of the woods yet, cause I still have to deal with my left side, but the right side is doing exactly what it's supposed to. HE IS AWESOME.

Parker if I have to do it all over again it's ONLY WITH DR. STEINGBERG and Stanford. The team they have for MM is
outstanding. Don't worry, most of us on the board has MM and went through the hard part.....SURGERY only because we did not know what to expect and it was dealing with our "Hard drive" that was scary....

BUT, you will be amazed at how much you will improve after the surgery and  there is hope and a treatment.

Keep us posted and we are all rooting for you!

LOL,
itsme