Hi,
Just wondering if anyone can help with an older patient that doctors say is not a candidate for surgery due to age.  My mom was recently diagnosed with moyamoya in October 2008 after a year of TIA's and a stroke in May 2008.  In Oct. 2008 she had a small brain hemorrhage and with more testing she was diagnosed.  She is 71 years old and we have been told extremely lucky not to have had any symptoms until she was 70.  After consulting another neurosurgeon at U of M for a second opinion, we were once again told she was not a candidate for surgery due to age.  Besides being confused when she has episodes(TIA's, seizures, strokes),  she is still very active with no resulting paralysis and is very much with it after a day or 2 of recovering. We know we have been blessed with such a late diagnosis although we are still hoping for a miracle and it seems if anyone has any ideas, it may come from here!  Thank you!

Hi Janene, Welcome to our moyamoya family.

I’m sorry to hear your Mom was diagnosed with MM. I certainly hope and pray there’s a solution out there for her.

The best advice I can give you is to get the opinion of a MM specialist. Unfortunately, there are only TWO MM specialists that I’m aware of, that deal with MM on a daily basis. One is a pediatric MM specialist, Dr. Michael Scott, Boston, and the other is Dr. Steinberg, Stanford, CA. He’s BOTH a pediatric and adult MM specialist. It's a lot easier now a days to obtain a second opinion, you simply mail a copy of your films/records for review, and they contact you with their expert opinion, and then you’d know without a doubt if you’re on the best path for your Mom’s case. I don’t know if your Mom is a candidate for surgery or not, but I do know many MM patients have been told the same exact thing and Dr. Steinberg did successful surgeries when no one else would, and Stanford is one of the largest MM referral centers in the world. The consult is free and all it would cost is the postage, so IMO, it would be worth a try. They have a wonderful MM team/staff, and Dr. Steinberg has done close to 600 successful MM surgeries.

I’ll keep your Mom in my thoughts and prayers.

Mar

I'm so sorry to hear about your mom's diagnosis.I agree %100 with Mar.If it were my family I would not settle for anyone other than a MM specialist making this critical decision.It's as easy as sending records and waiting for the call.Please keep us posted.
Mary Grace

Hi Janene,
Dr. Steinberg has performed surgeries on patients in their sixties. I don't know the age of his oldest patient. Some folks in their seventies are in better physical condition than many in their sixties. You might want to give the Stanford Moyamoya Clinic a call. Please don't give up - I was told by a neurologist that I was too old to have Moyamoya last year when I was 54. If I had accepted his word, it's very likely that I wouldn't be here today writing this message to you.
Kim

My family would like to thank all of you for your help, kind words and giving us hope!  If Dr. Steinberg tells us she is not a candidate for surgery, we know we have done everything humanly possible and if she is a candidate, then we have our miracle.  Our thoughts and prayers go out to all the patients and families with this terrible disease.

Be well, Janene