i am sorry Amanda is haveing such a hard time and for the bad news you have just receved. I would send this infromation to Dr.Stinberg to get his opinion on what should be done next.
I will pray for you and your famliy to be strong durring this difficut time.
Becky

Here is the link to Dr. Steinberg's page: http://med.stanford.edu/profiles/Gary_Steinberg/

His Nurse (Teresa) should be able to point you in the right direction about anything. Her email is: teresab@stanford.edu

Dr. Steinberg Email: gsteinberg@stanford.edu

Mar

Amanda needs to have surgery again, they are going to do her left side first but we are waiting for a date to be set up. They are going to try the Omental Transposition this time. Please keep her in your prayers.

momof2,

How would you describe the twitching?  Matthew had "twitching" two years ago.  They were diagnosed as choreaform movements.  Basically, his left hand twitched a LOT!  Sometimes the twitching even extended up into his arm. 

We took him to see his neurologist.  They did an MRI.  We consulted Dr. Scott.  He was as perplexed as everyone else.  Then, about three to four months after they mysteriously began, they went away. 

The only explanation the doctors gave . . .  because Matthew had had three strokes, there was brain damage.  And brain damage can cause choreform movements. 

I had a theory that playing catcher in baseball and using his left hand for the position "overtaxed" the connections.  (He did suffer some loss of strength to his left hand, arm, shoulder, and foot with his 2nd stroke).  However, when the next baseball season began, there was not a return of the twitching. 

Kim -- mom to Matthew, 17, diagnosed at 7 with three strokes, single kidney due to mm in renal artery, Laura, 22, Jacob, 14, and Kay, 10.

Amanda has to be in Toronto on January 22, for pre-op and to meet with the general surgeon. Her surgery date it set for February 9, as of now. They are going to try the Omental Transposition this time on her left side. We will have to wait six months before we know if it was successful.
I will keep you posted.

Is she being seen at sick kids and if so by what doc , my 12 year old just had surgery by Peter Dirks he did an amazing job !!If you need info please message me also there is another doc that does direct approach surgery he is at Toronto Western if i can be of any help please ask !!

I do i live about a 20 minute drive from both Sick Kids and Toronto Western, Josh will go back in May and have angio and mri/mra to see the success of surgery , but we have already noticed a difference amazingly enough , he went from a child getting headaches everyday and taking pain meds almost every day to having 2 headaches since coming home from the hospital December 2 so woot woot !! Please keep me posted , or if you need to chat anything, i was lost when we first got the diagonis until i found this site,