Hi - I read Abby's story and was just amazed.  I am fairly new to the site - joined in November 2010 after my 6 year old granddaughter, Grace, was diagnosed with AVM after MRA - angio was done end of November with heartbreaking results - inoperable and untreatable - the reason - large and difuse - graded as a 5 on the Spetzler-Miller scale. This was stated in 2 separate opinions.  We are waiting for Dr Rosenwasser from Jefferson Neuro in Phila to review the reports.  The AVM has not bled - Grace is on Tegretol to control seizures that she experienced in September, starting us on this life long journey.  I need to read stories like Abby's to help with hope and strength. - Cindy

well I dont know what to do anymore hopefully this doctor will listen to me, he was a normal healthy child until last year when the avm hemmoraged now everything is going wrong so I will just keep going and fighting until someone will listen.

we are going to a cardiologist on thursday hopefully we will figure something out! How is abby doing. I just feel lost and alone sometimes no one seems to understand all the trama that is happening to his body. Thanks

I just read your story and I can not believe that what happened to our children is so similar. I want to know absolutely everything about your experience (or at least anything you are comfortable sharing.) Why did Children's in Birmingham not feel comfortable treating Abby? We met with Dr. Fischer on Nov 9 and he said that he can't get a "clear target" on Taylor's AVM. He has presented his case to his team and we go back again Dec. 7. They seem to take forever up there! That is three months after the initial seizure.

I am really interested in the doctor's in Phenix. You are not the first person to recommend them. I would also like to know about some of the side effects that Abby has experienced. Anything you want to share I would love to hear! Thanks so much.

Hi, how is Abby doing? I was looking through the pictures, she is so beautiful. I imagine it has being really hard. God has always help his children’s ...
God Bless you and Abby..
Ninibeth

Wow! What a journey. I was reading your one post how the the doctor's called 2 weeks later to tell you the angiogram was not good enough. I can identify with you! We were waiting for notification of when my son's surgery would be and when we finally got someone on the phone to talk to us it was to tell us he was inoperable. I think they were dragging thier feet because they didn't want to tell us. Luckily, we were already in the process of a 2nd opinion in NYC (and even got a 3rd in Boston)...both 2nd and 3rd opinions felt that Trevor's AVM is operable. Since then he has had his first embolization and is scheduled for his craniotomy June 8th. It sounds like Abby is doing well! I will be praying for Abby's continued recovery. She is just adorable!

Thanks You are right and made the right choice! I am trying to contact others by computer to find out if we have other options, but his is so massive in the cord that no one can really tell me much. Thanks for the support and I hope you and Abby are doing well!

Great someone in BAMA! Birmingham childrens did a good job with Joey it is just that they cant give me answer to my questions, joey is older than abby so maybe it was easier for them to deal with. (his in the spine) Joey sees Dr. Rozzelle from childrens and Dr. Horton from UAB Main does all of his angiograms. Dr Law is his Therapist and the pain and spasms in his right leg is hard to control but luckly for now he is doing well. do you find abby is tired alot?? joey does. Thanks