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

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,  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!

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.

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