Wow, Mary Grace, you have lived my worst nightmare. I was scared to death waiting for the surgery date even though it was only a couple of weeks from the time Dr. Steinberg reviewed Emily films.  For years I asked for MRI's of Emily's brain because she has NF and there is something else "weird" with her MRI on the left side and the geneticist wouldn't order one nor the neurologist.  Finally, I went through a bunch of testing and stuff and finally they did the scans.  The first set they told me that Emily had some enlarged blood vessels and they just needed to recheck them in 6 months.  Eight months later they called me and we did another set and then an MRA.  Then they made the diagnosis of MM and I came on this web site and then saw our neurosurgeon here in Michigan who said we could wait.  Then I sent everything to Dr. Steinberg.  I knew something was wrong for years but Emily never had strokes or seizures - but Dr. Steinberg still isn't sure about some things on the films.  I knew we were living on borrowed time.  Every single day I waited for something bad to happen.  We live in a small village and when Emily was in school and I would hear the sound of the volunteer fire dept. I would hold my breath.

Mary Grace I think your story alone would inspire people to take action immediately or to get more than one opinion if nothing else. Coming on this web site probably saved Emily from future strokes - and I don't think they would have been long off.  I hope your daughter has continued success in her rehabilitation.

Audrey

Hi DHuynh,

Please accept my sincere condolences for your loss.

Thank you for sharing your mother's story and by doing so, helping others who may be in your same situation or looking for answers or direction.

Too often we hear about Moyamoya patients being misdiagnosed or instructed to wait. Too many docotrs in the medical community are unfamiliar with the disease and don't realize the treatment options or that the disease is progressive. We need to continue to raise awareness of the disease in the medical community.

I agree that one should get several different opinions from doctors experienced and knowledgeable in the disease.

Please don't blame yourself.  I'm sure you did everything you knew to do or could do at the time given the circumstances.

Take care,

Lore

I was diagnosed with MMD at age 32 and my neurologist wanted to proceed cautiously because 1. I was 32 and hadn't had any horrible ill efects and 2. because he was completely baffled by the diagnosis. I waited three years before I broached the subject of surgery with him again, and eventually found a neurosurgeon locally and had the surgeries. My neuro figured that since I was diagnosed at such an advanced age and wasn't dead yet then why do more possible harm.