As I posted before, Louise is loosing her hair, and it´s not growing back. Her doctors don´t know whats wrong, all her bloodtests were OK so far and very soon we will have to get a wig for her. OK, this won´t kill her but it´s a really traumatic thing for a nine-year-old girl to loose all her hair for ever.
One theory is that it has something to do with the mm-surgery in dec-02. She had the indirect by-pass and the vessels planted on the brain was taken from her scalp so perhaps the bloodflow there is being too poor causing the hairgrowth to "die".  So this is where I need your help since there is SO LITTLE EXPERINCE IN SWEDEN! Have you ever heard of this or does anyone have poor or no hairgrowth due to the operation?????????? There are more than 400 peoples mm- experience on this board which makes you my best expert!!
I will also e-mail Dr. Scott but perhaps he won´t have the time to answer me so please tell me if any of you have ever heard of this side effect of indirect  bypass surgery.

Annica,
Tyler had the direct by-pass, but Dr. Steinberg assurd us that they use the vessels from the scalp because you will never know they are gone. Also the vessel the use is just a section, would that affect the whole scalp? I hope they find out what the problem is soon.

Lisa,
It has been almost 2 years since Tylers surgeries and he still says the scar feels weird when I touch it. He doesn't complain when I help him wash his hair anymore, but he is picky about anyone touching the sides of his head.

Annica,

Yes, I have read about alopecia being a side affect of moyamoya surgery.   It was in the book "Moyamoya Disease" (Ikezaki, Loftus).   I got the impression, though, that the hair loss would be specific to an area (i.e. the place where the STA was taken), not all over the head.   The book said that in those cases where alopecia was caused by surgery, hair transplantation was successful.

I also wanted to share, though, that my daughter has had a "bald spot" on her head since she was born.  She's got a little hair there, but it is much less dense than the rest of her head.  It is on the same side that was most affected by moyamoya (the left side), and one of the theories we've heard is that there is a lack of blood flow to that area of her scalp, causing the lack of hair growth.

Jenny (mom to Daphne, 19 months old)