Well it looks like Amy has done pretty well through the 1st week of testing,
Day 1: Spect scan with diamox, Amy reports this as not bad at all. She slept through most of it, except when pictures were taken at the end. Test lasted about 2 hrs. The IV was kept in hoping she could use it at the next days testing. I flushed it that night. Amy started that eve. with jerky movements in her legs and arms, but not bad.
Day 2: This is a CT scan using xenon gas and then an angio with IV contrast. Diamox was also used. The IV we were hoping to use was not big enough so it had to go and a new one in. This test was about 3 hrs long and I had to wheel Amy out in a wheelchair as she just couldn't make her legs work well. That eve. the jerky movements got pretty bad.
Day 3: Mri with IV again. This test was 1.5 hrs. then to another scect scan, this one without diamox. This test was 2 hrs long. Amy mentioned to the nurse about the jerking and she contacted Dr Steinburg. Amy was sent to ER which we spent the next 3.5 hrs. Her seizure medicine level was too low and Amy was prob having seizures. Not sure if all the IV stuff used had lowered her levels or what but we don't want anything to jeopardize the surgery scheduled for next wed.
It was a very tiring week but Amy is very close to getting better!
We appreciate all your thoughts and prayers. This website has been a real inspiration to Amy. Thank You,,,her mama

Hi Christie,
Wow, your girl has been through so much already! I can't imagine dealing with the insurance issues that she has while being so very ill. She is amazing.
I and my lifelong friend and Moyamoya soul mate, Irene had our first of two surgeries each with Dr. Steinberg exactly a year ago. In hopes that it may help to relieve your worries even a little bit, I want you to know that we are both happy, and healthy with no pain and no worries. I'm praying that Amy has the same success as we did. She has placed herself into the hands of the most capable and compassionate team of doctors, nurses and support people anywhere. I'm sure you've met Jill by now. The surgery can last a long time - mine took nine hours. Seek her out during Amy's surgery, visit the Moyamoya clinic and ask for her.She knows what it's like to be there as her daughter also has Moyamoya and had surgeries with Dr. Steinberg four years ago. She's doing so well that she participates in ocean swimming events.
Know that Amy and her family are in the prayers of her Moyamoya family.
Hugs and best wishes,
Kim

Amy's mom,
I am sorry to hear Ammy is having a hard time. I was happy to hear that they contacted Dr Stinberg when they had a question. That realy shows you have caring people you are working with. I will pray for Amy's healthy and speedy recovery through this difucult time. I will pray to give you strenght to help Amy get through this. Please keep us all posted on how she is doing.
Becky