Hello All,

It has taken nearly a year to reach this point, getting the correct diagnosis, being referred to all sorts of doctors telling her she didn't have moyamoya, but in the end my sister, Sherry, has been told by Stanford that she has a severe case.  She is flying out tomorrow, (May 13th) and is scheduled for surgery on the 21st and the 28th.  

We are hoping and praying that the doctors will be able to save her from the frequent strokes and further progression.  

I know all of you are praying for the same thing for your loved ones and yourselves and I wish everyone well.  This has been a long and scary waiting game.  I believe moyamoya is probably not as rare as the doctors think and I hope to help spread the word so that people can receive help much more quickly.  

Thank you DJ, for this board.  Without it my sister may still be floundering.  

Cathy B.  

Your doing the right thing and going to the right place.  My daughter had her first surgery last month and is doing great.  I can't remember the last time she was doing this well.  She returned to school 2 weeks after surgery.  Good luck, my prayers will be with you and your sister.

Love,
Margaret

Hi [smiley=wave.gif] Cathy B. and welcome to the Moyamoya family!

Your sister's story is all too familiar to many of us.  My brother went misdiagnosed for 4 years, had two strokes, a dissected right upper internal carotid artery and the list keeps going.  We found this site, contacted Stanford and the rest is history.

My brother was operated on (both sides) at Stanford by Dr. Steinberg in May of 2005.  Today, my brother walks,  talks, and has no paralysis. One would be hard pressed to know what he had gone through and the condition he was in when he arrived at Stanford.  Dr. Steinberg is known as the King of neurology when it comes to Moyamoya. You are in the right place.  The Stanford Moyamoya team will take care of your sister from the testing to the surgery to the aftercare and follow-up.  They are truly amazing and I am in awe of their abilities as my brother's outcome is miraculous to say the least.

Please know we are here to support you and your sister through this journey so please ask any questions.

You and your sister are in my thoughts and prayers.

Please keep us posted on your sister's progress.

Hugs,

Lore

HI!!!  We will be in Stanford on the 27th but my daughter Emily doesn't have any tests until the 29th and surgery on June 3rd and 10th!  If you need anything we will be there.  I'm not sure about housing yet but if you'd like to exchange any information you can send me a private message!!  I am so anxious and so excited at the same time.  You would never know anything is wrong w/my daughter but I recently found out she's had some mini strokes.  I found out when Teresa called me.  None of the doctors here EVER told me.  Well I just wanted to let you know that other people from this board will be there.  Good luck to your sister!!!