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

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

Does any one know Dr. John Myseros from Fiarfax Hospital?

Any help is appreciated.

mimisaad,

We live in Fairfax VA and my daughter had her surgery with Dr. Steinberg out of Stanford back in August of 2007.  My daughter is now 10.  

Prior to our decision we spoke to Dr. McClintock (Neurologist) and Dr. Keating (Neurosurgeon) both out of Washington Childrens Hospital.  Dr. McClintock has an office in Fairfax and Dr. Keating's office is in D.C.  Dr. Keating was the one who said that if it were her daughter, he would have the surgery in Stanford by Steinberg.  Both have MM patients and in fact Keating has performed the procedure but only on adults.  

Based on all post-operative tests conducted after surgery, 6 month, and 1 year, the surgery was a complete success.  However, she still suffers from mild TIAs ranging from 3 per week to 3 per month.  No one has been able to explain the cause and none of the extensive tests (multiple SPECTs, EEG, MRIs, and CT Scans) provided any information but that the blood flow is normal and the surgery was a success.  That said, she loves swimming and currently on a competitive swim team.  She takes viola lessons, she's in a Japanese immersion program at school, takes Korean language lessons on the weekend and excels in class (all As and Bs).  Hence, no sign of cognitive impact, thus far.  With the exception of the scars and her TIAs, you would never know she has MM.

Our next steps are to screen for other causes and perhaps obtian second opinions from overseas doctor who may have greater experience/data with post-operative diagnosis and prognosis  

Also, keep in mind to consider the psyciatric impact.  At such a young age, to ponder the question of life and death and live through the traumatic experience of two brain surgeries, it has to take a toll on the mind.  We had our daughter visit good therapists for a couple of months.  We thought it was well worth the effort and cost.  

I hope this message finds you in timely manner.

Best of luck

Michael

Hello, we are also in the Fairfax VA area.  We are seeing Dr. Bernad in Woodbridge. 

What do you think of John Hopkins in Baltimore?  Their website mentions doing moyamoya procedures.

How long did you have to stay in California?  Did you stay in a hotel?  What were (roughly) the out-of-pocket expenses?

Thanks so much! 
Todd

mimisaad -

So glad you have joined the website.  We will be praying for you and your daughter.

Just a comment:  Our daughter Kate was diagnosed with MM nearly 4 years ago.  At that time we contacted John Hopkins and were told that MM was not a priority disease and they really could not help us for at least six months, if at all.  We were BLESSED to find Dr. Steinberg; Kate had double by-pass surgery the next week and is doing beautifully, praise the Lord. 

Much could have changed since Kate's surgery, but we will NEVER be sorry we went to Stanford.  If/when you call them, they will work with any insurances and can also help with lodging, etc.

You will be on my heart.

Cass, Kate and Jon in Texas

Cass/Kate:
Is it common to be turned down by neurosurgeons at Hopkins?
I am reading this quite a bit and I had the same experience from Hopkins (I'm from Montgomery County, MD). It seems like everyone is going to Dr. Steinberg for second opinion.
In your experience, did you learn something new from Dr. Steinberg that you did not learn from the doctors at Hopkins?
Also, I did not get an explanation as to why the neurosurgeon at Hopkins did not want to do the surgery. Were you explained why? What was your experience from Hopkins like?