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.

Hi Annica

I'm not going to be of much help really as I just had my indirect (combined with a direct) a month ago but you have me interested in this topic.   I'm curious, did the part where they shaved Louise's hair for surgery grow back initially afterwards?  Mine is rapidly growing back in BUT my scalp is totally numb and I'm concerned it's going to stay like that.  Don't get my wrong, my head (the inside) is absolutely killing me, but the outside of my head has no feeling except in a few small spots.  Did Louise have that after surgery and if so, did the feeling ever return?  Your theory of not enough bloodflow to the scalp could maybe prove correct- I wonder what Dr. Scott will say.  Please let me know what he thinks when you hear back from him.  Did they rule out any medications that may be causing this?

Poor Louise- my heart is going out to her! [smiley=heart.gif]  Our hair is so important to us girls!

[smiley=hug.gif]Lisa

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-
When my hair started growing back in after surgery, it would fall out if I even touched it.  This only lasted a couple of months.  I have naturally curly hair and the area that was shaved has grown in pretty straight.  I've also noticed my hair is much thinner since surgery.  I am thinking of Louise....I'm sure that is extremely difficult on her!  Any medications that could be causing this??

Chelsie

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)

Hi again all you mm-heroes!

And thank you for your answers and thank you Nancy and Carasmom as well for the answers you posted on my other topic about this.
Thanks to you I have found some info on this. Still don´t know what caused it in Louises case but we are a little bit closer to the truth.
Also, I want to share with you that I did e-mail Dr Scott about this and received an answer from him personally a few hours later (!) telling me he has not seen this in any case during the last 20 years! With all the experience he has that is "heavy" to me. That man is so nice and wonderful! :-*
Kids are truly amazing and Louise is slowly adjusting to the thought of loosing all her hair before the end of the summer and is even trying to comfort me about it! :-*
She is hopeful enough to beleive it will grow back eventually. ::)

Thank you all for beeing there, you are all my heroes you know :-*

Take care

Annica