My Daughter is 22 and was recently diagnosed with Moyamoya.  I am not sure if I should be doing something else.  We live in San Antonio and are on Tricare so we are being seen by Neurology at the military hospital here.  They admit they don't have much experience with this disease but they did put her on an aspirin a day and told her not to smoke.  They will do another MRA scan in September to see if there has been any change.  She has not had a stroke, but did have some tingling and numbness in her left arm, which is how we discovered this news.  Any recommendations anyone can give me would be helpful.  I am a worried mom.   :(

Thanks,
Stefanie

Hi Stephanie!  You are going to get a lot of fantastic advice from the people on this site.  We are grateful for all the information because the more informed you are the better you'll be able to make decisions and not feel alone.  It sounds like you may have to get active in your daughter's case.  An MRI can give some information, but an angiogram is the best way to see what is going on.  And waiting until Sept for another scan is probably waiting too long...especially if she was just diagnosed.  You shouldn't wait until she has a full blown stroke....the tingling, etc is clue enough that she's having issues....they are like mini strokes. YOu can find resources on this website to find a doctor or clinic that has MM experience...then make an appt! Welcome to Club MM!  Good Luck!

Hey Stefanie,

My son is 12 yrs old and was diagnosed with Moyamoya in April of last yr. after suffering a stroke THAT WE WERE ABLE TO SEE! When we took him to the hospital, he was given an mri/mra, full blown stroke was confirmed along with confirmation of 4-5 previous "silent" strokes that me n my husband were not aware of. 

My son has special needs and is nonverbal, he could never tell us if he had bad headaches, tingling, numbness, etc. If he did have any of these symptoms, and was able to let us know, we may have been able to prevent him from having these strokes. 

September is a long time to wait. If I were you, and if you can, I would talk to/see another dr. about her diagnosis and what treatment is needed before things possibly get worse.

Best of luck to your daughter n family.

Hi Stephanie,

My daughter had numbness and tingling, too. Turned out she was having partial focal seizures and TIAs due to Moyamoya. We were advised that surgery is the only effective treatment. My daughter had her surgery at Texas Children's Hospital in Houston. Neurosurgeon is Robert Dauser, MD. Moyamoya surgery is his specialty and my child improved greatly after he did her surgery.

Hi Stephanie,  I agree with the others.  If you can get Tricare to approve seeing another neurologist I would do it right away.  We have Tricare (standard) and UnitedHealthcare.  Tricare hasn't paid one penny toward any of our medical.  I honestly don't know what will happen if we lose UHC.  We will change to Tricare Prime and hope for the best I guess.  My daughter never suffered a stroke either and had surgery on the right side.  She now has the beginning stages on the left and will be monitored until she needs surgery again.  You really do need an angiogram to see the real extent of the moyamoya.  Good luck.  I will be following your progress with Tricare!

Stefanie,

I was active duty Air Force when I had my surgeries.  You CAN get Tricare to approve traveling to have the surgery at a specialty center such as Stanford.

If you can get Stanford to take on your daughter's case, they can help work the Tricare issue from their side.  I know of two other MM patients with Tricare that were able to go to Stanford.  haven't heard of anyone being denied yet...

Hope this helps!

DJ

DJ, thanks for posting that.  John has insurance as a retiree with American airlines.  We have been worried about their stability and wondered if we would lose our insurance if they go under or are bought by someone else.  I'm glad to know that Tricare will be there for Destin if that happens.  I'm sure we will have to change to Prime (we have standard now) but at least I can rest a little easier now.

Stephanie,

We are TRICARE Standard (Retired Army).  Stanford takes TRICARE.  We flew from Germany to Stanford in OCT and our son had excellent care and treatment. 

I would try for Stanford also, I live in Wisconsin but spoke with Dr. Steinberg who is with Stanford and as I was not being taken seriously with my symptoms after my first surgery, he kept at it talking to my doctors here. They tried to put my dizziness and stuttering (which I had never had before) to Conversion disorder, which is your brain produces symptoms yet there is no actual diagnoses for the symptoms, a psychological problem. Dr. Steinberg did not believe it, as going for my second surgery my doctors were still skeptical that it would help. They went in and checked that the back of the left side of my brain had no blood flow which produced my symptoms. If it wasn't for Dr. Steinberg from Stanford I would have not been taken seriously for any of my symptoms as they would have said it was Conversion Disorder. So push for it, you don't want to have to wait til something major happens.
~Jenny