Hi,

I'm so glad I found your web site!  After spending many days looking for a Moyamoya support group, to finally find one!  What a relief!

My story:  My grandson, born 5/5/00 was diagnosed with Moyamoya in May this year, after having several TIA's, the first one noticeable Dec. 26, 2003. 

On June 21, he had his first surgery (a new blood vessel was put into his head through the temple and I know there is a name for it, but... hey, give me a break!  I'm grandma!).  The surgery went fine, done by Dr. Richard Ellenbogen at Children's Hospital in Seattle.

He was quickly released from the hospital, everything looked great.  On June 28, he had a major stroke, causing paralyzation of his left hand, partial paralyzation on the left side of his face, and a definite speech impediment.   

So, now the drs. are wanting to wait to do the second surgery, because of the danger of stroke during surgery. 

I'm looking for any information from anyone that's gone through this, of what next may we expect...

Anyone?  And thanks, it cheers me to know there is another that's already walked in my shoes.  Not that I'd wish this on anyone!

Thanks,

Coy4u2

Welcome.  I am so glad you found us.  I have to agree with Lisa, might check out the link here of the surgeons who specialize in MM.  I didn't realize how many there were until I found this site. 
We went  to Dr. Scott in Boston.  Wonderful team.  He can look at the films if you send them to him and then let you know what he thinks. 
I only say Dr. Scott because I have experience with him.  Good luck.  Keep us updated on grandson's progress.

Hi.

My sister has moyamoya and has just recently had both bypass surgeries done at Stanford Medical Center in Palo Alto, California. 

The surgeon is Dr. Steinberg and his nurse is Theresa.  Words cannot express my gratitude to these two people.  Also for the people on this Web site.  It was just over a month ago when I first got on this Web site, and I have learned so much.  And it hasn't stopped.

You have found the best Web site regarding this disease and, plus, you can post questions to others who have been there, done that. 

Good luck to your family.

Sincerely,
Rhonda

Hello.  I just finished with both my surgeries at Stanford under Dr.  Steinberg.  I had a stroke about 2 days after my first surgery.  I had problems talking and expressing thoughts.  Dr. Steinberg went ahead and did the second surgery a week later and everything has turned fine.  I am not saying that your grandson's situation is the same as mine but I would definitely seek a second oppinion.  Dr. Steinberg has done over 200 mm surgeries.  I hope everything works out.

David Farthing

Hi Coy-

Welcome to our family.  You've definitely came to the right place.  I had my surgeries with Dr. Scott - the leading MM surgeon (IMO) on the east coast (Boston Childrens Hospital).  However, Dr. Steinberg (leading on the west coast) is obviously closer for you!  Both are wonderful surgeons and respond well to e-mails and phone calls if you want to get a second opinion.  Good luck with your grandson!

-Shari

Sandi,
      I was wondering if you recieved my Pm I've been having computer problems but they're straightened out now but I wanted to make sure you got it incase I only thought they were straightened out.
                  Nancy ;

What a dear Grandmother you are!  I'm glad you found this site, too - we didn't have it when we went thru this!
My son was 3 1/2 when he was dx'd after having a left hemispheric stroke which paralyzed his upper rt side and ability to speak (except he could say NO real well!)  We are near Houston and had the blessing to have access to Tx Children's Hospital where MM was very familiar to the neurosurgeons.  Kyle went in on a Sat, was dx'd Mon after the MRI, had an angio on Tues and they operated on the rt. side on Thur.  They didn't do the lt side then, because of the swelling and inflammation from the stroke, and they knew he was in danger of having a stroke on the rt side from the MRI/angio.  Kyle went home within a week and came back 10 days later for the surgery on the lt. side.  he would've come back sooner, but the OR was booked!  He went thru it all extremely well.  bottom line: I think in most cases, with MM, have the surgery as soon as possible!!
I'd like to mention something I haven't seen mentioned in any of the posts I've read:  The Anestesiologist is VERY IMPORTANT!!  The info I obtained on MM surgery when Kyle was in the hospital pointed out that the biggest risk with this surgery is supplying blood/oxygen to the brain during surgery.  This is risky with a healthy blood suppy and  MUCH MORE risky with a blood/oxygen-starved brain!
As far as recovery from the strokes, start therapy ASAP after the neurologist gives the go-ahead.  do what you can at home and continue it for as long as you can.  With his young age, he has a very good chance for catching back up with his peers.  A good therapist will know how to get him to do the therapy while he thinks he's just playing!  And tell his mom/dad not to be surprised if he won't work with them - our son wouldn't and the therapist said that was very normal!
My thoughts and prayers are with you all.  I hope when he grows up he knows how lucky he is to have a grandmother like you!

xoxo
sue