I had just recently taken my 8 y/o daughter in for headaches.  After changes in diet and seeking help from a chiropractor the headaches did not go away.  She had x-rays showing some compression in her upper discs, due to a rough birth.  We had first thought they were Auroa Migranes.  I finally got sick of seeing my child in so much pain when she'd get a headache and numbness in her right hand and arm.  I took her in to her doctor and had and MRI done.  We got the results back and now she has to get and MRA.  The results suggested Moyamoya.  What kind of an experience is my daughter and my family in for?  I've done some research, and I'm really scared!   The pediatrician gave me info on moyamoya. and info on Dr. Michael Scott.   Please help, I feel so lost.

  Your Dr. has given you the name of one of the best surgeons to do this surgery.My daughter was diagnosed 2 yrs ago and had surgery at Boston Childrens Hospital at that time. She has been stroke free since then. Has your Dr. put your daughter on asprin therapy.Also has he told you of the dangers of dehydration and hyperventilation?Have you been to Dr. Scott's web site? I think the hardest thing was waiting for the surgery.The recover from the surgery is usually very short.Most children are up and running in days.Boston Childrens Hospital is an amazing place full of wonderfull people.If you have any specific questions please feel free to e-mail me at RGrace5@aol.com.I know how scary this diagnosis sounds but at least you have found thins site it is a wonderful place for support anad information.It's comforting to know that others have been there.Your family is in our prayers.
Mary Grace

Did your daughter have the numbness or pain in her arm and hand?  I have been to the surgeons web page, and very confident in just what i've read, and what her doctor has said about him.  
I feel like I'm stuck between a rock and a hard place.  This is the hardest thing I've ever had to face.  I'm worried about making the right decision.  But I will not back down from my decision on her having the surgery.  My parents are big 'herbalists'....and giving me grief about my daughter going through surgery.  But I'm following my heart and what I've learned so far, and there is no cure, except surgery, that i know of.  And I would not be able to live with myself if I didn't do the right thing, and she had to suffer because of my choices.  Thank You for you response, it means alot to find someone else who knows what we are going through!

You are absolutely right that there is no other alternative to surgery.This actually gave me reliefe in that it really wasn't a decision I had to make.It had already been made there was no other option.My daughter started out with a loss of balance this then became niticably one sided, that is when we took her to the ER.At the time we had a neurologist appointment the following week.She was diagnosed the next day.We had to wait 3months for surgery and kathleen suffered 2 more strokes before surgery.If you would like to talk I can send you my # We live in NY.
Mary Grace

FYRMOM911,
                   You are doing the right thing no surgery is not an option the majority of people have the numbness its normal for this disease read alot of the posts and you can learn alot of what people are going through and what to expect and different surgeons ect. Dr. Scott is one of the best though. Keep us posted.
                        Nancy

FYRMOM911 -

Dr. Scott is wonderful.  I had 2 surgeries with Dr. Scott at the beginning of the year.  By the way - feel free to e-mail him with questions.  He's very quick to respond and is happy to help.  When I was in the hospital everyone spoke so wonderfully about Dr. Scott!!  Anyway, the numbness and weakness that your daughter speaks of is exactly what alerted me to seek a doctor's help.  I was shocked to find out the diagnosis - that it was actually a stroke (I was 28 at the time) - but when I read everything that I could read I knew that surgery was the only option for me.  We are all here to support your family - ask us anything - we'll try our best to help!  Good luck!!

-Shari

[smiley=wave.gif]FYRMOM911

I have to agree with Shari 100%! Dr. Scott and his staff are the best in the country for children with moyamoya. You couldn't be in better hands. If you read other posts, even in the archived messages, you'll see how resilient the children are and how they came out of this surgery. Many have said, it's tougher on the parents waiting. The kids are up and around almost immediately. And as far as making the right decision about having surgery...It's the only decision with moyamoya. This is a progressive disease and Dr. Scott will know the best plan of action for your daughter, I'm sure.

You're in all all thoughts and prayers. Please keep us posted.  [smiley=smile.gif]

Mar

Hi
Dont be scared everthing will be ok. I was diagnosed with Moya Moya 1 yr ago and I now a healthy 14 yr old. When i first found out i was scare and didnt know but after my Dr. explained everything it was easier. After my surgery i felt so much better no more numbness in my hand or leg or weird movements.  After my surgery i was just tired and really had no pain. Your in good hands and everything will be ok. Just always remember everyhting will be fine :)

Hi!

I live in Sweden and my daughter is now 8 years, the same age as your daughter. She had the same symtoms starting almost 2 years ago with numbness, headaches and TIA´s. In october 2002 the doctors diagnosed her with moyamoya and two months later she had her surgery on both sides under the same anestesia. I too was scared to death of the surgery though knowing it was the only alternative for my daughter. Today, 1 year and 4 months later, my daughter is perfectly healthy and has no side effects from her disease. Slowly you learn to take one day at a time and be happy everything is fine right now and not to worry too much about the future.
Louise´s Swedish doctors knew very little of this mm and got in contact with one of the greatest experts in the world on the field; Dr. Scott who "supervised" and guided them from Boston and he even was in contact with me on mail; the hysterically worried mother!
I know doctor Scott is one of the best so try to be confident that this is the best for your daughter! The disease is awful but the surgery is nothing to worry about really, you have everything to win!
I´ll be thinking of you and your daughter and remember that there are soooo many people on this board who know what you´re going thru at this moment and we will all be thinking about you so it can´t go wrong!!!

Annica

Hi Colleen----AS you can see, everyone on the site thinks that Dr. Scott is wonderful...while I have no personal experience with him, I have heard that he is excellent.  If you need a 2nd opinion, you might want to contact Dr. Neil Feldstein at naf6@columbia.edu.  He is an excellent pediatric neurosurgeon and has perfomed more than 70 procedures related to moyamoya.   NYC is pretty close to Boston, so you might want to consider him.  I have daughters who are 13, 10 and 4 and can only imagine what you are going through.....I am so thankful that I am the one with moyamoya and not any of them......I live just 25 miles from NYC, so if you need a place to stay, you can stay here....let me know....God Bless you and your family.PatM