Within in 2 hrs that we sent the faxes to CA and MA we got calls from both offices.  In Dr. Steinberg's case, his nurse called and explained their procedure and what would happen and to please send CD's of her images.  As far as Dr. Scott goes, his partner Dr. Smith called my sister directly and spoke with her.  He explained about the disease, the procedure they use and how it differs from Dr. Steinberg's and gave the stats on how many they do there.  He said they would be happy to take her case pending seeing her images (which we overnighted today).  My niece is all for the opinions and if we can get the insurance on board I believe we will be going to Boston for the surg.  

I read on here that, and i am sorry i am not recalling the names of the members yet, someone's daughter was being operated on yesterday in Boston, when the dr was on the phone with my sister he mentioned he had just gotten out of surg on another case, I wonder if it was the one here on the board.

THANK YOU THANK YOU THANK YOU for this board DJ.  Thanks to all the wonder people who responded to me.  I doubt my sister would have gone past the original opinion if I did not push the research, i am a researcher, i would do it full-time if i could, must be the historian in me.  I so appreciate this forum and bless each of you and yours with health for years to come.  

I will post the final decision when it is made.

That’s great that you did the research Mac! That’s exactly what we always advise any and all members to do because of the lack of knowledge of this disease out there in the medical community. There’s just not enough yet, but if you arm yourself with knowledge, you and your family will continue to make informed decisions that’s best for your niece. Keep up the good work, and don’t stop.

With either MM specialist, you’ll be in great hands. [smiley=thumbsup.gif] That's my prayer!

Mar

My daughter, Abby, was in surgery with Dr. Scott and Dr. Smith for 9 hours on Friday 7/24.  I just posted a topic about it in this same forum titled "Abby - Pial Synangiosis IS DONE!!!!"  I don't know about going to see Dr. Steinberg, but I do know that the Children's Hospital here in Boston is "IT" as far as I am concerned.  Especially when you are talking about a pediatric case as my daughter, who is 10, would fall under.  We are still here in Boston healing as you might have guessed so my time on the site is hit or miss, but please feel free to ask any questions and I will do my best to answer them.

Thanks,

Demian

(Abby's Dad)

Dear Mac,
Well done for taking initiative and doing the research and finding all the resources. You are a fantastic aunt  :). I was in a similar situation three months ago when I volunteered to do the research for my niece because my sister can’t speak much English. You are absolutely right, this website IS THE BEST and the people here are WONDERFUL.
Now most people know that my family had an awful experience with BCH but I would not recommend or not recommend them to anyone.
I just would like to comment on something, from talking to Teresa (the nurse who has been working with Dr. Steinberg for 20 years) and from watching the videos of the First International Moyamoya Symposium available in the ‘on the news section’ (Iwould recommend you watch Dr. Steinberg and Dr. Smith parts). I know that there are 2 types of moyamoya surgeries the direct and the indirect. I have watched Dr. Steinberg presentation so many times and he had a pie chart showing he has done 90% direct procedures and 10% indirect. What type of surgery to g for depends on the size of the blood vessels and how fragile they are? This is of course will be shown in the MRI and angiogram tests. You can actually see the video of the procedure in the presentation. It is fascinating.
As for BCH they do the indirect only.
All the best for you and your family.

Mac,
MY daughter is 6 years old and her surgery was done a week after Abby's by Dr. Smith at BCH..both sides done at the same time ..surgery lasted about 8 hours...she is doing great...Demian is right BCH is  '' IT ''..
Good LUCK!!!

Hi Aneta,

I'm so happy that Nicole is doing great!! thank you so much for updating us ....

All the best,

Paula