Hi!  I just got diagnosed with MM this week.  I am 59 yrs old and I am terrified.  Can anyone offer any positive support for me?  The neurologist told me that surgery could make things worse and to just wait and see.  I, however, want to take more action...perhaps go the the Cleveland Clinic.  Thanks for any response.

Hi,

My daughter was diagnosed in Jan this year, I know it is scary but the way to help with that is to take charge of your disease and treatment. It will empower you! First you must find a neurosurgeon who specializes in this very rare disease. It is not easy, but this site is a great tool and so is the Internet. Research the docs you find in your area and look for the word Moyamoya in his treatment specialties. I have learned that through trial and error. We live in San Antonio and there was no one here that we could find so we had to go to Dallas. There are also specialists in Houston. So do your research and when you contact them, they will want to review your scans so I would get a cd from your dr. Start yourself a file and get organized and that will help. There is a lot of info on this site and it's very helpful. Make sure your insurance will cover the dr you find. We had some problems with that. It took some doing to get them to authorize a referral since the disease is so unknown, but we finally did. Good luck to you and I'm happy to answer any questions you have if I can. Stefanie

After getting your responses (thank you), I have made an appointment with Dr. Meyer at Mayo Clinic.  I will see their team on July 26 and July 27.  Feel really good about this.  Jan

I'm in Chicago and had EDAS surgery in 2000 at the University of Ill Chicago hospital by Dr. Fady Charbel. 12 yrs. later and all is well. I had a second opinion with Dr. Meyer also. Wish you the best. I'm 53

Dr. Meyer was fine. Only had the one visit but he was pretty straight foward and answered my questions well. He is experienced with Moya Moya which is what I was looking for and he confirmed that I needed the operation. I was required to have CT scans done at the Mayo Clinic prior to the consultation.

I understand you COMPLETELY! When I found out I had MM 8 months ago. I was scared *****. Didn’t know ANYTHING, didn’t know what to do. Reasearched the net and living in a country where there is not much known about the disease and not much done about it, scared me even more. But then my neuarologists sent me to a Universitey Hospital here in Belgium and there was a surgeon who had done 9 operations on MM patients. Only 9 because there are not many more patients here. Out of the 9, 8 survived and are okay. One died because he had something wrong with his heart too.
So he gave me hope that he could do it. Then,when they looked at my pet scan closely, they saw that my MM hasn’t progressed enough yet to even DO the surgery. The blood vessels (smoke of puff) that are needed to flow the part of the brain that has to be blocked off for about 30 minutes haven’t been developped enough yet. And that is needed, because if that part does not get blood flow during those 30 minutes, I could have serious CVA’s during the operation. So They don’t wanna risk that because I’m still ‘too good’ right now. I get blood thinners and anti-epileptic meds and I mannaged to pick up my life, got back to work and do what I did before the diagnose. And even though I insisted on having the operation in the beginning because I was told I wouldn’t get far without it, I am glad now that I didn’t have it done yet. Now a follow up is scheduled next month. I’m scared to find out wether it has stayed stable or has progressed. Don’t know what I want, because the way I feel now, I’m okay. And if it has progressed, that means that one day I might have to go through surgery, no way around it. But then I also have to wait until it has progressed enough and it’s scary to know what can happen during that waiting time....
But it gives me hope that one of the patients at the hospital has stayed stable for over 12 years now!!!! It just stopped.... We’ll have to wait and see.

Now what I wanted to say was : ASK your neurologist WHY EXACTLY they don’t wanne do it yet. But like the others said, also keep finding info on the net and with other specialists. THERE IS NO SUCH THING AS TOO MUCH INFORMATION in our cases.

Good luck!