My 6 year old daughter was just diagnosed with Moya Moya.

Does any one have any experience with Surgeons in DC area? I also would like to know if the Anesthesiologist was experienced or not cause the literature says Anesthesiologist experience is also important.

Hi All:

I am very anxious, stressed out and frankly dreadful to find out my 6 yr old angel has MoyaMoya. She had 3 lesions on  two sides of her head. First episode was in 2006 but CT scan showed no lesion. She was hitting the walls as she walked and was unable to speak. This year two times her speech became gibberish and right side of her mouth was drooping slightly. So we took her to Holy Cross and later to D.C. Children’s on her birthday on 6th Aug. Holy Cross did CT scan of her head and found 2 lesions. After that the sent her to DC Children’s and Children's did MRI and Spinal tap on last Sat. The MRI confirmed the lesions and was diagnosed MMD. The spinal tap was clear. But we are getting the rest of the results Wednesday.

We are scared, dreadful and petrified, any experiences with Kids having MMD and experience with surgery and recovery experience would  be greatly appreciated?


 

There is a section called surgens with bypass experece i this site. I am from MN and had mine done at the Mayo. you may need to surch the page but I am confident you will find one. If not I would talk to Dr. Stinberg and see if he or his team can assist you.
Good luck and you both will be in my prayers.
Becky

Thanks Becky for your reply.

Can you advice about the quality of life after Moya Moya?

Thanks,

Sabrina's Dad

Hi Sabrina’s Dad, [smiley=wave.gif] Welcome to our MM family!

You asked about the quality of life with MMD, do you mean with or without treatment? Without treatment, I’m sorry to say, with MMD a stroke is coming, we just don’t know when it will happen. This is a progressive disease, which means it gets worse as time goes on, so you’re always at risk of a stroke with this disease. The progression differs with each patient, some faster than others, but never the less, the arteries to your brain narrow and close off, so your brain does not get the proper blood, oxygen and nutrients it needs, and that’s a stroke/hemorrhage or even death waiting to happen. That’s why prompt treatment is so vital, and surgery is the ONLY treatment for MMD to help avoid that stroke or death. Surgery introduces new blood flow to the brain by either “direct” or “indirect” bypasses, which lessens the chance of a stroke. No medications stop the arterial “narrowing” process from progressing or the MM vessels from developing.

With treatment, you have an EXCELLENT chance at a normal, healthy and quality life, IF you get the proper treatment with a doctor who has experience treating this disease.

We often see lack of experience with this disease in the medical community, so our advice is always to learn all you can about MM, so you can’t be steered in the wrong direction. For example, many doctors without MM experience, have their patients "WAIT and see", and then unfortunately a disasterous stroke, as in my family's case, then it's too late, the damage is done. Delay in treatment is the particular pitfall we see most often.

It may be wise to get copies of all your daughters’ films and have a MM specialist review them for his expert opinion. A second opinion is always very wise when dealing with a rare disease. Now a day, you simply mail the films for review and they contact you with their expert opinion, then you would know if you're on the best path for your daughter’s case.

There are "two" MM specialists in this country that deal with this rare disease on a daily basis. One is Dr. Michael Scott, in Boston, he’s a pediatric MM specialist and of course Dr. Steinberg, at Stanford, CA. He’s BOTH pediatric and adult MM specialist.

I am not a medical professional, so please take my advice for what it’s worth, but over the years I’ve found that children are resilient and just blow me away at how well they do. It's amazing. So, you’re on the correct path learning and asking questions. That’s a great start. Please feel free to ask anything, no question is too small. Many have traveled the same road and understand your fears, so we want you to know you’re not alone.

You'll be in my thoughts and prayers.

Mar

Hi Sabrina's dad!

Welcome to the Moyamoya family.  Of course, we are sorry to hear about your daughter, Sabrina, but we are glad you found us here!  

Let me introduce myself.  My name is Michelle and I am a 37 year-old female with moyamoya disease (MMD) and live in the Fredericksburg, VA area (an hour south of DC).  I actually happen to work in Arlington, VA.  My brother, Shane, who is 35 years old also was diagnosed with MMD in 2005.  We have both had surgeries (me in 2004, Shane in 2005) with Dr. Steinberg in CA.  

Shane and I would love to meet with you, your daughter, Sabrina and your family and try to answer any questions you might have.  Please feel free to send me an email at Chelles4U@aol.com.  Shane and I both look forward to talking with you.

Also, you should know there is a Dr. Scott in Boston who deals a lot with children that have MMD.  Both Dr. Scott and Dr. Steinberg can be found in the Surgeons section on this website.

Shane and I will keep Sabrina and your family in our thoughts and prayers.  

 I'm sorry to ehar your daughter has been diagnosed with MM,but I"m so glad you found this group! The greatest advice you will get is to be sure to contact a MM specialist.My daughter was diagnosed at about 5 yrs old. Unfortunatly she had several strokes.On the other hand I'm happy to say she has done marverlous ever since her surgeries.She's had no strokes since her surgeries,and is recovering slowly but surely from her strokes.We traveled to Boston for Dr. Scott to do her surgeries.He's not only an amazing surgeon who litteraly saved our daughter's life but a very compassionate person and took great care of our family. The same goes for his whole staff.Our only issues are  from the stroke recovery for our daughter,and the fact that she was also born with down syndrome.If I can help with any more specific questions please feel free to ask.My prayers are with your family
Mary Grace
mgrace5@nycap.rr.com

P.S.  I forgot to mention it's been 6 yrs since my daughter's surgery and last stroke!!  I remember all to well the days before her surgeries and the waiting was just unbearable at times.We could think of nothing else.We didn't ahve this wonderful group at the time so we also felt very alone.I hope at least you can feel like you have someone to lean on through your journey. That's what this group is here for.To share our experiences and lean on each other.Also to celebrate the accomplishments and positive,like all the uneventful recoveries from surgery and the  rehabilitation from even the most devestating strokes.
Mary Grace

Hi, I didn't go online lately that why I didn't return your mail. I send you email awhile ago.  Feel free to call me.  If any way I can help, I will.
Kieu

Hello just have positive mind. I will be pray for your daughter and you.

Everything will be good, be patient

Mary

wyrik is 3 yrs old and he has unilateral moyamoya on the right side of his brain. he is getting his surgery in sept at stanford i know they gave us the choice of boston too. i know that boston's hospital is pretty good thats closer to you. i know how scarey this all is my son is perfectly normal developmentally but he has had 3 seizures where he totally loses controll of his muscles. he hasn't had a stroke yet but they want to do the surgery before he has one.