Hi..
  my name is Kristin. my brother Jared was diagnosed with moya moya about a month ago.We are from Brooklyn New York. His first sergury is scheduled for the 30 of april in new york city.It is for an indirect bypass. My mother decided to speak to a doctor in california who looked at his pictures and says that he should have the direct bypass. we are all very confused and arent very sure who we should go with.Were not sure what would be the better surgury..
so i was wondering if anyone on here knew anything and can maybe help us with this situation because we really dont have that much time!
thanks

Kristen,
Mar is right. Talk to the doctors. My son was 11 when diagnosed and the doctors wanted to do the indirect method here in CO. In my research, I found the direct method was suposed to be better. I point blank asked the CO doctors the difference. They totally ignored my question, until I asked them to send a copy of the test to Dr. Steinberg. I told them too late, I needed someone that was willing to answer my questions. So ask all the questions you can, and don't let them ignore you. I had to cancel a scheduled surgery here without knowing if I had a way to get to CA, it ended taking another 3 months to get surgery scheduled in CA, but it was worth knowing my son was getting the best care. I'm just very glad he didn't have another stroke waiting.
Rena

Thank you all for giving me your imput on this situation. I know that my mother is weighing more towards the direct method now since she has also spoken to a doctor in boston to get his opinion on it.He agreed with the doctor in california.
I think shes just waiting on my brothers general doctor.He is supposed to be asking a doctor that works at NYU for his opinion.Hes going to be getting back to her tomorrow and then I guess shes going to have to make the decision.
I know all of you understand the difficulty of the situation. Its very hard when theres so many doctors out there and hardly any of them know information on this disease. Im just happy that I found this website and all of you caring people are giving me some sort of information.
Ill make sure to keep you updated on whats going on.
Thanks again
                         Kristin

Hi Kristin, This is Tom G.  I've spoken to your mother twice on the phone and cooresponded with your sister by e-mail about Jared.
    I had a similar dilema involving the same 2 doctors.  I had  a CTA scan and a perfusion CT scan at NY Presbyterian Hosp about a month ago.  My Doctor,  (Dr. Conolly) said that I dont need surgery at this time.   because my blood flow was excellent and At this time I'm Asynptomatic.   I have tremendous faith, confidence and respect in Dr. Conolly's knowledge and skill with MoyaMoya but after reading this web site and talking to some of you I felt that I owed it to myself to see what Dr S.  on the west coast had to say so I sent him my scans.  His nurse called me and said that Dr. S felt that I needed surgery So now what!!?   His nurse also said that DR. S. is very agressive with MoyaMoya and always recomends surgery.
    The next day I talked with Dr. Conolly and told him what Dr. S said.  Dr. Conolly asked my wife and I to come in to his office.  There he spent over an hour reviewing my scans and explaining that I have very little stenosis and that I slso had excellent vessels providing excellent blood flow.  He stressed that Brain surgery is nothing to take lightly and should only be done when absolutely necessary.  He also said that he could do a bypass on me, but that it would be of no particular help to my condition, especially that I have no symptoms.
    Kristen, I'm not a doctor but my brother is a pediatric surgeon and we both agree with Dr. Conolly's logic.  Jared is in excellent hands so tell your mom That I said hello and to stay with Dr. Conolly I think he's the best.  I'm sure I'll need surgery eventually. 
    By the way Pat Martin is having her surgery tomorrow april 16th by Dr. Conolly remember to pray for her.
    Sorry to be so long winded but it's a long story.
    Take care Tom G.

Hi Kristin -

You are going to hear a lot of advise on this board all revolving around different experiences.  I think the bottom line is that your brother needs to do what's best for him.  Brain Surgery is NOT a thing you should take lightly and I think Dr. Sander is giving you excellent advise.  If you need to get a 3rd, or 4th, or 5th opinion by all means do it!  Do whatever you need to do to help you come up with the right decision.  The job of a Surgeon is to operate - plain and simple.  I did have 2 surgeries, EDAS with Dr. Scott, however, I was symptomatic.  I can't tell you what's right for you.   But whatever you decide to do, I would make sure you keep in touch with the doctor - keep a journal if needed - and let you neuro know if anything changes.  (By the way - when I say you I really mean your brother!).  Good luck!

-Shari 

Hello All-
     I just want to thank you all again for all the information you have been giving me and my family.
To answer one of the questions..my brother is a 23 year old with Downs Syndrome.I understand what everyone is saying though that it goes by the person and how far along theirs is.
I think my mother has decided to go with the doctor in New York due to the fact that my brothers insurance company is saying that it will take a while for all of the paper work to go through.
She says that if the paperwork goes through by the 30 then hes meant to go to California. If not..hes meant to stay here.
My mother trusts the doctor in the city, its just getting 2 different opinions makes it just that much harder to decide what to do.
She just doesnt want to wait. She doesnt want to take the chance of something happening again. He has passed out around 4 times in the past 3 years. We thought thats all it was come to find out now that it was all mini strokes.
Thank you all again I really appreciate all the comments, opinions and support you all have given my family and me.