Hi - let me introduce myself first. I'm Matt, 28 years old from Belgium.

My mother has been diagnosed with MoyaMoya roughly 23 years ago. I was just a little kid when she collapsed one night when going to the bathroom and I have very little recollection of what it was like before she got it.

Ever since she collapsed and has been diagnosed with MM she has it very hard walking like a "normal" person. On even floors it's doable for her to go from point A to B, but even then she trips over herself and it's not an easy task to get up herself. Going outside on her own is an impossible task because the roads and sidewalk borders are things she just can't walk on or off.

Needless to say that this has been putting a lot of stress and frustration on myself as well. This might sound harsh, but doing a lot of stuff for her day in day out can get too much from time to time.

As I said, I'm 28 years old and still live at home with my mother mainly because of the MM and the problems that come with it, but I'm in the midst of getting things ready to move out.

Now - I was very surprised to read that there is a surgical "solution" to MM.  But sadly enough that doesn't seem to be an option for my mother.

She told me that she can't be fully anesthetized because of her MM. I take this for true, but am still wondering about the surgical procedure though.

If she would get the artery bypass - does that mean that she will be able to walk again and do the things as before she got diagnosed with MM?

Welcome to the family. I would send your mom's infomation to Dr.Stineberg. He is the expert of MoyaMoya(MM) in the USA. He can give you the infomation you need to see if he has MM.

Here is his contact info:
http://med.stanford.edu/profiles/Gary_Steinberg/

I will pray for your family espessaly your mom.
Becky

Thanks for the info. I will surely pass this on to my mom.

Matt~

Thanks for checking onto this web site. I hope it can make your  mothers and your life easier -- or al least get some support.

As Becky suggested... please contact Dr. Steinberg.
Stanford hospital has a much expertise with moyamoya. They have staff who are devoted to working with moyamoya patients and families..
Many of us on this board have been anesthetized for our surgeries (see DJ's intro that talks about the surgery -- if you haven't already).
Surgery saved my life and greatly improved it.

I wish you and your mother all the best,

Linda (LA)

hello matt, you just decribed parts of my childhood with your post, my mother has had moyamoya for 24 years i was a year when she was told, her balance is very bad and i am afraid to leave her home alone, like your mother she is not suppose to be anesthetized either, however she has been and recently, Dr. Chicoine a Neurosurgeon , From Barnes-Jewish Hospital in St. Louis Missouri has been able to work with my mothers moyamoya, while the surgery she had was not related to her moyamoya, she had spinal cord surgery, they are hopefull that they can help her go under again.

All the very best

Carol W

Hi my names Nancy. You mean to tell me you're mom was diagnosed 23 yrs ago and never had surgery :o if so thats incredable not my opinion but a fact! Yes you can be anesthetized many. many people on this site with MM have had surgery. Providing the only reason is because of a MM diagnosis you probably want a 2nd opinion, if she has other issues as to why she cannot be then thats another story. My daughter had her strokes 6 yrs. ago yesterday and it wasn't until about 5 or 8 months ago she gained a tremendous amount of balance from physical therapy. She has been going most of those 6 yrs. but this therapist had a balancing machine she stood on that did great for her. We would never let her walk outside without holding onto her but now she does, on real rough ground we stay close by. I don't know that the surgery itself would do it as far as her balance goes as my daughter was in to bad of shape and could not walk, but the surgery enabled her to be able to rehab herself back from being like a newborn because without it she would have died. Dr. Steinberg at Stanford saved her life when other surgeons wouldn't touch her. I strongly urge you to seek another opinion. Even if the end result is she can't have surgery at least you know that to be true for sure. Good Luck and let us know how she and you are doing. I know how hard it is caring for someone, but maybe with the right help she can get a little better and things can be better for you too.

                              Nancy :)










                     

in my family's case it is an unfortunate fact that our mother is unable to have the surgery for moyamoya, her case is far to advanced, its so advanced that they don't want her to go under for anything unless absolutely necessary, as with the spinal cord surgery she had 3 years ago, but her brain is to risky to mess with. my mother was dx 23 years ago, but has been showing symptoms for 50+ years, if the technology would have been there 25 years ago it wouldn't have mattered for my mother, it was to advanced then, and at that time the surgery consisted of removing the top of the skull and layer fat pads from the stomach over the brain for extra padding when she would have the strokes. she wishes everyday she could have the surgery but cant, we have been told by 5 different doctors and two major medical institutes that its not possible for us, even tho they want to try they still tell us they cant take the liability. but its a blessing to hear that others are able to have it done.

Nancy_N. wrote on Dec 29^th, 2008 at 1:12am:

Hi my names Nancy. You mean to tell me you're mom was diagnosed 23 yrs ago and never had surgery :o if so thats incredable not my opinion but a fact! Yes you can be anesthetized many. many people on this site with MM have had surgery. Providing the only reason is because of a MM diagnosis you probably want a 2nd opinion, if she has other issues as to why she cannot be then thats another story. My daughter had her strokes 6 yrs. ago yesterday and it wasn't until about 5 or 8 months ago she gained a tremendous amount of balance from physical therapy. She has been going most of those 6 yrs. but this therapist had a balancing machine she stood on that did great for her. We would never let her walk outside without holding onto her but now she does, on real rough ground we stay close by. I don't know that the surgery itself would do it as far as her balance goes as my daughter was in to bad of shape and could not walk, but the surgery enabled her to be able to rehab herself back from being like a newborn because without it she would have died. Dr. Steinberg at Stanford saved her life when other surgeons wouldn't touch her. I strongly urge you to seek another opinion. Even if the end result is she can't have surgery at least you know that to be true for sure. Good Luck and let us know how she and you are doing. I know how hard it is caring for someone, but maybe with the right help she can get a little better and things can be better for you too.                               Nancy :)

Sorry for the late reply, New Year and such... =]

Well, I asked her earlier today if she never ever had any surgery done for this and it's truly a no. One doctor diagnosed her with MM, the other one told her that MM only affects children, or very rarely adults that went through a long period of stress/ trauma,... She did, going through a divorce, but at that time never mentioned it.

A surgery was never done for what I understand the reason is that what's gone is gone. She also never had any medication prescribed either, but I'm not sure if that even existed then or now.

I told my mother about this site so she can read up on everything herself and hopefully she will, because from what I know and read so far a lot of opportunities have been waiting for her a long time.

@Carol W it is really nice ( I'm sorry but I can't find a better word) to hear from someone who's story is very similar. Thanks for your story, it is very much appreciated. =]

i understand what you mean, your welcome.....