Dr. E. Sander Connolly, Jr. is with NY Presbyterian Hospital (tel no. 212-305-0376)  He has done about 50 of the various surgeries associated with moyamoya.  I think I was number 51. I had my suregery on Friday morning the 16th of April,  and was home by Sunday afternoon.  The staff is also great at Ny Presbyterian hospital....so, if you are in the NY/NJ area, I would recommend Dr. Connolly with the utmost confidence.......

i just want everyone to know that dr connolly is a skilled brilliant doctor his bedside manner is also great he operated on my son jared on april 30th jared is doing wonderfully he will also be doing his second surgery not sure when yet i highly recommend him
                                                    donna

DITTO DONNA----You and I have first hand experience with just how wonderful Dr. Connolly is----and I agree, his bedside manner is superb-----you can tell that he really cares about his patients---Glad to hear Jared is dong do great.   Love to all the family. Pat

I am 20 years old and i was diagnosed with moya moya and i havent gotten any treatment i have been having bad luck actually i cant even get a nuerosergoen i dont know if it has to do with my health insurance but i will appreciate the info.   Judy

[smiley=huh.gif]Hi Judy, This us Tom G.  First of all Where do you live and who diagnosed you?  Can you travel? Hopefully we can offer some help or advise with your insurance issues. But, yes you do need to consult a neurosurgeon.  Keep your chin up you've found a good family here and we'll get you through this.   Post a reply and if you can e-mail me at tdgallucci@optonline.net.
    You'll be fine  Tom Gallucci. :) :)

HI i live in Reading, PA
i definetly can travel i used to live in NY so i know that travel area well.
Thanks

I live in Southern NJ.  How long did it take for you to get in to schedule  to see Dr Connolly before you even had the surgery? :-/  

:)Hi, Char,  Welcome aboard! this is the best support family that you'll ever find ;;D
    When you call Dr. Connolly his secretary is Pat, and she will usually get you in within a week.  I think he's great and he will take plenty of time to explain everything to you.  By the way I live across the state from you in Howell NJ
Best of luck to you.  You'll be in good hands with Dr. Connolly :D

Take care,  Tom G.

Hello MoyaMoya people!  Jason here, 32.  Diagnosed a month ago Lancaster PA (I see some folks not to far from here).  Looks like the big 3 options are Stanford, Mayo in MN, and Boston Children's Hospital.  My records are out with Dr. Meyer at Mayo, they won't speak to me over the phone as far as a consult.  I'd have to travel and go from there.  I just email Dr. Scott at Boston's childrens hospital (who occasionly will work with adults).  He responded within a day and it sound like he will speak with me over the phone before any travelling.  Obviously the neurolgists here are a little lacking.  I do have a consult in December at Hershey Med, but we'll see how that goes.  Am i missing anything, should I be looking any where else?

Thanks!

- Jason

Hi Jason, Welcome to our MM family!

I’m from the suburbs of Philly, and I gotta tell you that I definitely agree, it’s been my experience over the years, they certainly are lacking experience with MM around here that’s for sure.

You’re definitely heading in the right direction if you’re looking for a neurosurgeon with MM experience. That’s the key to success IMO. There are so many important factors involved with this rare disease and experience can save your life.

Also, FYI, you can get a second opinion from a leading MM specialist, Dr. Steinberg, Stanford, by simply mailing a copy of your films, and he will contact you with his expert opinion after reading your films. You are correct in that Stanford is one of the largest MM referrals centers in the world. Dr. Steinberg has done over 700 successful MM surgeries with over a 95% success rate.

I don’t know your specifics, but generally speaking, incase you didn’t know a lot about MMD, I must mention that this is a progressive disease, so where you see little knowledge in the medical community, there isn’t much of a concern for treatment in a timely manor, and prompt treatment is also very important. So learn all you can about MM and be proactive, so you’ll be making informative decisions about your treatment and future.

Good Luck. If you have any questions, don’t be afraid to ask. No question is too small, and please keep us posted.

You’ll be in my thoughts and prayers.

Mar

Hello out there,  My daughter was just diagnosed with MM two days ago, she is 3 months old.  I have made an appt. with Dr. Scott in Boston for Tuesday May 25th.  I live in Bellmore, New York (Long Island).  He was the only one I could find who treated pediatrics.  Does Dr. Connolly treat pediatric patients this young?  Does he have a lot of experience with MM?  How on earth do you know if you are making the right choices?  I can't tell you how scared I am and how lost I feel.  Hope someone out there can help me a little.  Thanks for listening  Jeannine

Hi Jeannine,

I'm sorry that your son has been diagnosed with MM, but I'm glad that you have found this website.  It is a great source of information & support.

Hang in there.  You're making all the right choices.  You're educating yourself about MM and you have chosen the best of the best when it comes to a surgeon for your son.  He will get the best care possible from Dr. Scott & his team.

I can't answer your questions about Dr. Connelly, but I wanted to say that I understand what you are going through and how scary it is.  My 7 y/o first began having symptoms when she was 3.5, but she was 6 before she was finally diagnosed.  For us, it was a relief to finally have a diagnosis, and knowing that surgery was really her only hope for a normal life made the decision to proceed with the surgery very cut & dried for my child.  She had two surgeries in October09, and is doing great now.  You can read her story at the Caring Bridge site listed in my signature line.

Please feel free to send me a private message if you have specific questions or just want to "chat".

Best regards,

Jennifer

My apologies - I realize it is your daughter who was diagnosed with MM.  I just made an error in my post.

Hi Jennifer  Thank you for responding.  I am so happy to hear that your daughter is doing so well.  It gives us a great deal of hope.  So did meeting Dr. Scott.  My daughter has to have more test done, then we will go from there.  Will be back soon.  Jeannine