My five year old daughter Portia has just been diagnosed with moyamoya syndrome.   Her ancestry is half (Han) Chinese (mom's side) and half caucasian.

Her presentation began about 1.5 years ago with frontal headaches at 3-4 am.  The headache would get more intense over several hours and then she would vomit suddenly, once or twice, and seem to recover.   

After visiting a pediatrician and a neurologist, and having CT scans and MRI's done, we were told that she was having "migraines."   The concern had been a brain tumor, but nothing was seen in the studies. 

At the peak, the frequency of attacks was twice a week. The frequency/severity of the "migraines" then decreased over a year, eventually reaching once a month.   About a week ago, she had a really bad headache and displayed pronounced weakness on the right side.   When a cerebral angiogram was performed, she was diagnosed with moyamoya syndrome.  The attack was evidently a stroke.  There is very little apparent impairment -- just a touch of weakness on the right side.

Her surgeon is Mark Souweidane at Weill Cornell, and we expect to operate on Thursday.

That's the story.   Any advice, comments, and suggestions are welcome.

Is there any role for pharmacological agents in moyamoya?    I noticed a promising study with a calcium channel blocker, nicardipine, for refractory childhood moyamoya.   Does anybody have experience with ergoloid mesylates (e.g. Hydergine, Nicergoline) or vinpocetine -- reputed to improve cerebral circulation and provide neuroprotection?   CDP-choline?

Thanks.

Thank you.  I hope the tests go okay.  You all will be in my prayers.

My 10 year old was diagnoised with migranes at first as well....4 years later he was diagnoised with moyamoya .......he is now six months post surgery and doing very well................he is on a baby asprin aday, and on "coq-10" for occasional headaches......coq is a over the counter medicine however we hace it made at a pharamcy to ensure that the dose is right ...zero side effects are a huge bennefit fot us as he did not tolerate the traditional headaches and seizure meds well........best of luck too you and if I can help in any way contact me

Mike

yes Roberts neuro prescribed and got us the pharmacy that makes it, Also because it is prescribe insurance covers it. As far as the benefits, presurgery it reduced his headache frequency by about half, also it seemed to reduce their severity when he did get them. post surgery we keep him off it for the first 3 months to see how he did with out meds, he is back on it about 2 months and hasnt complained of any headaches other then his normal spring sinus headaches................It works for him but as mar is found of saying I am not a doctor, check with yours.

Hi... I read your post earlier, but did not have a chance to write.  I'm glad to hear Portia has gotten through her surgery.  The incisions you describe and swelling are all normal, as you probably were aware.  I am sorry that she is having some problems post operatively.  It is not uncommon for things to not go quite as smoothly as hoped.  I hope things improve for Portia soon.   She is in my thoughts!

Jenny (mom to Daphne www.daphnestory.com)

Thank you for reaching out with words of encouragement and support.

Portia went home from the hospital, and has been recovering nicely.   Aspirin seems to help - presumably through anti-coagulant effects - but it's hard to tell.   She seems to respond better to 162mg than to 81mg.  So far so good.

The surgery will hopefully be having an impact over coming weeks as blood vessels grow in.

I'm happy that Portia seems to be herself again.  Kids, thankfully, are pretty resilient.