My Cousin Is Severely Ill

My cousin on Wednesday seems to have suddenly have her brain cords burst in an almost stroke like situation and lost control of her hand. I haven’t been able to see her condition first hand but there is speculation amongst the doctors that she may have moyamoya syndrome.

That’s horrible, man. Is this the kind of thing from which she can recover? How old is she?

She’s nine and she seems to be doing ok now although she may need surgery.

Oh my stars Curtis, how awful, I’m so sorry to hear that.

Oh, poor kid. I hope she’ll be okay. Kids can be way tougher than they look.

The good news is that with therapy most kids do well from a symptom standpoint. For example, according to a state of the art review of Moyamoya Disease published last year in the authoritative New England Journal of Medicine, “the estimated rate of symptomatic progression is only 2.6% after surgery, according to a meta-analysis involving 1156 patients”. That’s not too shabby (but, of course, even better would be not having the disease in the first place).

You have prayer covered, I am certain. The doctors have the medical intervention covered. Have patience, maybe send your cousin a few get well cards [I always loved getting cards]

The human brain has an uncanny ability to retrain around injuries … it is amazing what people have recovered from.

I don’t know exactly what that means, but it sounds horrifying. I send my best thoughts.

Joe

I hope she makes a recovery from this. Poor thing. Keep us informed.

Apologies for not seeing this thread earlier and resurrecting a zombie, but, inasmuch as moyamoya is so rare a condition, Curtis LeMay may find my daughter’s story of interest, since she was born with the disease.

Moyamoya certainly is a potentially devastating condition, but with prompt, accurate diagnosis and appropriate surgical intervention, the outlook is far from bleak. Here’s my daughters story in a nutshell, which I recently posted to a GQ thread about “positive brain damage”.

My daughter had bilateral pial synangiosis surgery (discussed in this Web Q&A by her surgeon…btw, Dr. Scott rocks!). Here she is a few days after the second operation on the train headed home—the hat hiding all trace of her ordeal. That was almost 6 years ago and today at age 7, she is doing exceedingly well. Her lifestyle is minimally affected at this point, simply needing to stay well hydrated, anti-coagulated with aspirin only and to refrain from hyperventilating. She enjoys her yearly follow-ups in Boston with Dr. Scott.

The only sequalae she suffers is left hand weakness and foot drop, neither of which slows her down much—she swims, plays softball, soccer…and can outdistance her old man when she needs to in order to escape imminent and oft needed parental castigation (she may have inherited her dad’s brains and good looks, but she’s got her mother’s predisposition for evil doings :mad:).

A few weeks ago we had her tested with a WalkAide Bi-Flex Cuff, to improve her gait and she did very well with it, so even her drop foot may soon be even less of an issue. Note: anyone with foot drop and an intact peroneal nerve (e.g. foot drop from moyamoya results from upper, not lower motor neuron pathology, so the peripheral motor nerves should be fine) should look into the WalkAid system, IMO—it’s pretty cool…and getting better!

So, Curtis, if moyamoya is still the working diagnosis with your cousin, feel free to IM me if you have more questions. Hopefully she has something easier to deal with, but if she does have moyamoya, there’s plenty of reason for hope. Good luck.