Hi everyone, my mother has moyamoya and we have been researching alternative methods for treatment. we are going to china to recive stem cell therapy. has anyone ever had anything like this done? if so what were the results? any advice or feed back would be appreciated. thanks.

Hi Sarah,
First let me say that I think it is wonderful that you are researching and finding out all that you can about moya moya.  I personally went to Stanford and had my surgery with Dr. Steinberg so I cannot give you any information about the stem cell treatment that you are talking about, the only thing that I would caution about is the time frame that it may take for the stem cell treatment to "take" effect.  With mm time is a major factor, you do not want to much time to lapse as that is time that a stroke can take place.  I am VERY PRO stem cell research, I truly believe that it will lead to helping so many with different diseases, if mm will be one of them that is terrific!!  I just wanted to give you something to think about with your decision in this unconventional treatment.  I apologize for my bluntness but I can't help but wonder why did you decide on this treatment vs. surgery?  I think the majority of us that has opted for the surgery has had positive results so I was just wondering?
Kathleen

Would you mind sharing the research data you've found that has lead you to choose to travel to China for stem cell therapy. I'm interested in learning not only the process, but any documentation you might have about results from clinical trials or case history. I'd also recommend that you share the information with Dr. Steinberg at the Stanford Moyamoya Clinic. It would be interesting to hear his comments on this therapy. I'm sure he's aware of it and will likely give you some helpful suggestions.
If you do choose to go, please share your experience with the rest of us here. Best wishes,
Kim

Hi Sarah,

Welcome to our MM family!

I’m sorry to say I don’t have any advice or feed back for ya, I wish I had. I’ve never read anything about stem cell therapy or any other alternative methods for treating MMD. However, I have read about Dr. Steinberg (A MM specialist) leading a team of researchers at Stanford in stem cell regenerative therapy for stroke in rats. The results were very impressive! The article said that the researchers hope to use this approach within about five years in studies involving people who have had strokes, but nothing about stem cell therapy treating this disease. All we know to date is, surgery is the mainstay of treatment for MMD.

I just wanted you to know that we’ll keep you and your mom in our thoughts and prayers.

Please keep us posted. We’d certainly appreciate any information you might have or get in your travels.

Thank you and Good Luck!

Mar