Hi,

My 7 year old daughter was just diagnosed after an MRI/MRA yesterday at Children's Mercy in Kansas City. We have been dealing with her symptoms since she was 3 and are very relieved to finally have an answer. But, we still feel so in the dark. We have no idea what to expect and what time frame we are looking at. Her neurologist has suggested a Dr. at Texas Childrens and we are waiting to hear from them. Any suggestion in the mean time?

Thanks!!!

Sandi,Welcome to moyamoya.com.You've found the best place to get support and great information. There's a forum about specialists that you can read.I think everyone iwll agree that the top 2 are Dr.Steinburgh in Cal. and Dr.Scott in Boston.Our daughter was diagnosed at 5 yrs old and her surgeon was Dr. Scott.She suffered several strokes but not one after her surgery.She's 12 yrs old now and doing quite well.If you have any specific questions just ask away and I'm srue someone here will be able to help you.
Mary Grace

Hi Sandy,

My daughter who is 8 was diagnosed with MM in April this year at Children's Mercy in Kansas City after two strokes.  Our neurologist there (Dr Cruse) referred us to Dr Dauser in Houston.  We heard from Dr Dauser within two weeks and his nurse Sharon set up our appts.  Our first surgery was May 21 and 2nd June 8.  My daughter is now doing very well. We were in hospital 4 to 5 days each time and then stayed in town a couple of additional days each time (at a friend's house!)  We go back next spring for follow up tests.  Lots of people here have gone to Stanford and Boston, but we chose to go with the recommendations from CMH.  Dr Dauser exceeded my expectations.  The nursing staff at Texas Children's was for the most part awesome!  Dr Dauser's nurse Sharon helped us out a lot with answers (she will email or call you).  Dr Dauser knows our local neurologist personally.  

Good luck with your decisions on where to go!  Any more questions about Dr Dauser or Texas Children's I'd be happy to answer!

Jody

Thank you so much Lmom. That makes me feel so much better. My daughter is also a patient of Dr Cruse. After seeing all the comments for Standford I was begining to question whether Texas Children's was the best place to go. I completely trust Dr. Cruse, but your post has made me feel even more confident in the choice to continue to go there. And since we live in kansas, the trip to Texas is much more appealing!

Thanks again,

Sandi

Hi  Glad to ease your mind a little!  Dr LePichon at CMH, Dr Cruse and Dr Dauser all agreed on what my daughter needed. However,  I think most people on the board would recommend you send medical records to Stanford for a second opinion - certainly that's a good idea.  I did feel very nervous before we got to Texas Children's about our decision, but now I am very pleased with our results!  If you do go there, tell nurse Angela Hi from Lina!!!  She was awesome.  I wish I could remember our surgical nurses name because she was awesome too.  The waiting room is cold so take a sweater.  The food was awful so we brought food in for Lina when she was ready to eat, but there is stuff in the hospital and places nearby.  Good luck and keep us posted.  

Hi Sandi

Welcome. I'm glad you eventually got the correct diagnosis and are able to do something about it. There are many surgeons capable of doing the revascularization surgery required for moyamoya, some with more experience than others. You will know which one is right for you and your little girl.

Moyamoya is a progressive disease so the general prognosis is surgery before a severe incident occurs. There are a number of surgical techniques available to correct it under the headings of direct or indirect bypass. With direct bypass the blood flow to the effected areas is corrected immediately, with indirect bypass the blood flow is 'encouraged' to the effected areas and takes a few months to 'take'. With children, their arteries are generally too small for the surgeon to do direct bypass.

Good luck and know that we are all here for you, although, from what Jody says, you're in great hands.

Mark (Luca's Dad)

Sandi!  I am so glad you found a doctor you feel completely confident in.  The fact that someone on here has a good opinion of him from experience is just great!  Now you can focus on the results and feel that your daughter is in competent hands.  I think that's what we all want for our kids.  I wish you good luck on your journey and a speedy recoery.  :)  -Audrey