hello... i have no idae what i am doing wrong i have tried to post this several times so if it suddenly appears a zillion times i am sorry

      i have an 18 year old daughter with moya moya .. she has had 3  EDAS proceedures.. after 3 strokes  and one postop stroke...

              for about a year now she has been having falls .. where her legs just give out .. she does not pass out or have a seizure..just legs won't hold her up... neuro signs are good .. CT scans MRI/MRA are all normal..numerous doctors but no diagnosis
        has anyone had anything similar with themselves or a child... greting frustrated as no answers

Hi Heather,

I'm sorry that your daughter have to go through so much.  I did have my left leg give out time to time after my surgery, end up I have 3 bad disc in my lower back.  The leg is not only give out, it have numbness and tingle and bug craw feel like, also it painful sometime.  The lower back MRI show that.
May I ask if she have MKG or EKG(I really forgot the name but it something like that) where doctor will put a needle in the leg skin, needle is hook up with some electric and the reading machine, everytime it shocked the leg skin it will read to see if any of nerve damaged.  If she didn't have it yet, you may ask her neuro doctor to do that test to see if she have any nerve damage.

It base on my own experienced, hope it help.
Good luck to you and keep us posted.

Kieu

thanks for replying .. yes she has had every test they can think of ...its something in the brain that where the signal stops going to the feet ..not all the time  but its progressing ...just wondering if someone had  any fantastic off the wall ideas .. a super doctor...lol... maybe a miracle

  she baffles the neurologists and neuro surgeons physio OT's

   she also has had chemo ..radiation when she was 12 & 13  for a brain tumor ..she is an amazing kid..but getting tired and depressed  at getting no answers

         thanks heather

ps glad her neurologist gave me this site

         

Heather,

Wish we had some answers for you, but unfortunatly I have never heard of a symptom as this?!  :-/  I know you said she has been poked and prodded on, what kind of doctors have you been to?   Does she experience any pain when her legs give out?  Just a suggestion, but have you contacted Dr. Steinberg's office, even though she has already had surgery, maybe he or his staff could offer a suggestion?


If I may ask, what neurologist suggested this site to you?

Wishing you and your family well.  I will coninue to keep you in my thoughts and prayers.

Stephanie

hello..  and ty for replying
        being on the atlantic coast of canada  i don't know this Dr.Steinburg or even if he would respond to a question from so far away..how to even go about getting ahold of his staff ... no one here seems to know alot about moyamoya and with my daughter she has so many other issues too ..each doctor has his/her own opinion.. hard to get them, all on same page :-/

           if you could tell me where to even contact them  at DR.Steinburgs  clinic that would be wonderful

   the neurologist that told me about this site was Dr.Kevin Gordon in Halifax Nova Scotia Canada @ the IWK Children Hospital
     he thought maybe i could get some support from here and/or maybe someone with similar problems

         reading  everything here on your site  and abosorbing it all will take time but i am  really glad to have found you all..now don't feel so alone or invisable

              THANK YOU Heather ..emilysmom

Heather

It never hurts to call Dr.Stinberg From what I have hurd His group has responded to someone everywhere in the world. His group may even be able to give you a name that they trust in your area.
On this sight there is a grouping called "Surgens with bypass experience" his name is on the top of the list and there is a web link to his information.
Good Luck and you and your daughter will be in my prayers.
Becky