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

Hi Coy!

Glad you found the site!  There are many people with children suffering from MoyaMoya on this site that I'm sure will be of comfort to you.  Nancy especially may be of big help to you in this as you have similar stories.

My only thought in your grandson's case was wondering about his surgeon.  Do you know if he has much experience with pediatric MoyaMoya?  My personal opinion is that there are great surgeons and then there are great surgeons with lots of MM experience- especially when there are complications!  Has your family ever received a second opinion?  I'm not trying to insinuate that the surgeon is treating your grandson wrong [smiley=nono.gif] - I don't know anything about him either good or bad actually, I simply want to make sure that you all have the best care available for your grandson.  

There is some great information on this site in the "Links" section and read, read, read all the stories of others.  There is great power in knowing everything you can about MM and it's proper treatment, especially since it's so rare.

Welcome again and I will keep your little grandson in my thoughts.  Keep us updated on his progress!   :)

Lisa  

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.

Lisa,
        I sent a mile long Pm to coy. Just didn't want you to think I didn't respond.
                        Nancy ;;D

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

coy4u2 wrote on Jul 10^th, 2004 at 11:10pm:

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...

Hi coy, welcome to your mm family. [smiley=hiya.gif]

I can't say exactly what to expect, but I can speak from experience. Our story sounds so similar to yours. We were told we had some of the best doctors in the country for my niece here at the University Of Pennsylvania and they too said that we should wait to have the surgery after my niece's strokes. What we've learnt since then was although the neurosurgeons may be able to do the surgery, they do NOT know enough about moyamoya the disease. We sought a second opinion from a mm specialist, Dr. Steinberg at Stanford, who advised us to get surgery immediately. Although I’ve read that it’s common to wait 4 to 6 weeks after a stroke to proceed with surgery due to the risk of a pending stroke, if they’re having neurological dysfunction. I don’t know your grandson’s case, or how long they want to wait, but my advice to you would be, although you may like your doctors, you're dealing with a rare disease and no clear set of guidelines. You should get a second opinion from a moyamoya specialist. One who deals with mm on a day-to-day basis. From all my research, Dr. Scott is the leading Pediatric Moyamoya specialist on the East coast and Dr. Steinberg is the leading mm expert on the West coast. If you sent them your grandson’s films, you could get a second opinion immediately. Their e-mail address and info are available right here on this website under "Links". Also, I can't emphasize enough to read and learn all you can about mm, the more you learn the more confident you'll feel making the decisions knowing what the risks are if you wait.

Your grandson and your family are in our prayers and we're all here for you in any way we can. Please keep us posted.

Mar

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

Hello. Glad you found the web site too. Four months ago this site gave me the chance not only to join a new family but also svaed my life. I too recently had surgery at Stanford by Dr. Steinberg and in my opinion it would be worth getting his advice. He is a very wonderful man and though your grandson probably has a good doctor it would not hurt for more help. I wish you and your grandson the best of luck!

Christy

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

I must say, you're a wonderful bunch of people!  I've never had responses before like this!  Thank You!

I don't know how many cases Dr. Ellenbogen has treated, so I can't say... I've met him, but have not been there for the consultations.  

Children's Hospital here in Seattle is also a teaching hospital, affiliated with the University of Washington hospital, and Reese has seen several different Drs., most of them Neurologists.  Not just surgeons.  

But... I will copy all of your messages and give them to my daughter, since she doesn't have access to an online computer except mine when she's here.  And I'll let you know if any of the Drs. are Moyamoya specialists.

Thanks again for all your help and support.  Someday I'll figure out how to post a picture, and let you see Reese (he's just a little devil! Curly red hair and all!)

Sandi  ;;D

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 ;;D

  So sorry to hear things didn't go as well as you would hope.
It sounds very much like what we have been through with our daughter.She was diagnosed 2 yrs ago,she was almost 5 at the time.She had 3 strokes before surgery,one of which was the day before ehr surgery it happened on the way to to Boston for surgery.4 days after her first surgery she suffered strokes on both sides, one was very devastating. She lost all use of her left side. This sounds bad but on a good note she is doing wonderful now. She had surgery on the other side just 2 days after her stroke(Dr. Scott didin't want to wait for fear that she would ahve more strokes while we waited).Her disease was obviously progressing very fast.She made it thorugh the second surgery fine and has not had any strokes since then. She is also learning to do everything all over again.She is now walking (almost ruinning actually) and talking up a strome. She is going into 1st grade in Sept.She's reading and doing math and just LOVING school.It really helped that she spent a month in a rehab hospital after  most severe strokes.She has also had a pretty heavy load of therapies.It is a good idea as others have suggested that you know what the background of your surgeon is with MOyamoya. We were nearby an excellent teaching hospital also and there was a surgeon who had done a couple of surgeries for this but still sugested that if we didn't mind traveling we would be better going to Boston Children's hospital.If you have any other question ask away.....feel free to e-mail me directly if you like. RGrace5@aol.com.
Mary Grace

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