Our daughter Amanda had an angiogram last week and it showed that her disease is progressing. There has been signifigant change since 2007. She had EDAS done on both sides in 2000 but neither of those surgeries are working any more. The surgeon said they have never seen this happen before. They are now trying to figure out what to do next. We are so afraid for her. She has started having seizures now and we have noticed a decline in her abilities. Has anyone ever experienced this when you have had a surgery and it was working at the time and then just stops working? Amanda is now 20 years old and is so tired of dealing with all of this stuff.
Thanks Tricia

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

Thanks Becky, do you have an email address for Dr. Steinberg. We live in Canada but he may be able to give us some advice.

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

I was wondering if you had found out anymore about your daughters situation.  My daughter had surgery 5 years ago, and now a week ago she started getting a twitching.  We are going to be going to Seattle sometime within the next week I do believe, but I am unsure of what to expect.  From what I understand MoyaMoya can bring on seziures so now I'm wondering if thats what is going on with her.  I hope you have found out more helpful info for your daughter.

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.

It must be very difficult to go throuh this again, have faith and stay strong. Your family is in our 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.

Trisha    I  AM SOoooooo Sorry to hear about Amanda :'(
Where and When is she having the surgery ??
Also is the surgery there gonna do a Musle Flap ? That is what my 1st. surgery was (where they just laid musle on my brain & hoped I grow veins under it)
That surgery has actually Done Better than the EDAS  I had done in 2000 :)
You Give Amanda My Love & She Will Be In My Prayers :-*
Tricia I can't Believe Amanda is 20  !!!!!!!
My gosh She Was A Little Girl Last time I Saw Her

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.

Trisha,
Is that where they take jaw muscle and lay it on your brain and you grow spider veins under it ?  If so that was what my 1st surgery was on New Years Eve. 1998.......
And I have Alot of flow on that side,,,,,,Nowhere near that on the EDAS side......
Give my Love to Amanda (and All of You) She Is in My Prayers.....

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 !!

Hi
Dr. Peter Dirks performed EDAS surgery on Amanda in 2000 but now that she is 20 years old she is being handled by Dr. Micheal Tymianski at Toronto Western. They are going to take a stomach artery and attach it to the brain this time. They will do the left side first and wait six months to see if it was successful. I will keep you posted. Do you live in Toronto joshandmom9770? We live in Sudbury, Ontario.

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,

Amanda had her surgery on February 9th and it went well. She had a harder time with recovery compared to her surgeries in 2000 and was in the hospital until February 19th. We are home now and she is doing much better. Now we have to wait at least 6 months before they can do an angiogram to see whether or not new vessels have grown. She is an amazing young lady and the strongest person I have ever met. :)