Hi everyone,
My name is Rachel, my daughter Kaity just had Chiari decompression surgery on the 12th.
We found her Chiari on a MRI last yr. (May) by accident, they were doing the MRI to get a better look at her Scoliosis. She was dx with Scoliosis when she was 10months old.
When we found out about the Chiari, we starting seeing the Cheif of Neurosurgery at The Childrens Hospital in Detroit. He looked at her MRI films and noted the Chiari and said that it was very minimal and would not need the surgery at the time. So he's been monitoring her every 3 months for just about yr.
This past April he ordered a new MRI to check on her Chiari (to see if it was worsening) it came back worse..
she had far more pressure this time.
However, she has never showed signs of problems with her Chiari...so it was a good thing we found it by accident!
Kaitlyn was currently being treated with Scoliosis Casts in Chicago, and we were seeing some progress with that.
But, her Neurosurgen adviced us to stop the Casts until after she could have her decompression.
Because the casts requires derotation ect. of the spine to straighten it.. and he did not want to risk that with her worsened Chiari. He said that he also believed that by having the decompression we may see better results with her casting. That is our greatest hope.
She came through her surgery fine, she lost very blood and the surgery was done in 1 hr and 45 mins.
She stayed in the NICU for the first two days and came home on the third night.
Kaity is a very STRONG little girl... she's been through so much in first two years of life.
When she woke up from surgery a few hrs later...she actually tried to sit up by herself! :-0
on the 2nd day she was sitting up and eating well...talking and laughing. The Dr. and nurses were very impressed with how well she did. :)
I can't believe how strong she was for this horrid event in her life. She's home now.. and I'm trying to keep her activity level down.. and her insicion clean ect.
She's taking Tylenol with Codeine for pain and it seems to be helping fine.
She's really tired a lot.. and gets worn out easily...poor baby.
Is there any advice for after surgery ? I'm trying my best... this past weekend was one of the hardest I've ever been through.. I HATE my baby had to go through this.. but I do believe it was for the best.
We're just trying to get her on the road to healing now.
in about 8 weeks she'll be getting another Cast...until then she has to wear her brace.
Also, she has seen two geneticist's for her Scoliosis, Chiari, and WPW..
they have not found a correlation between them.. she does not have E.D.S either..
I guess I'm relieved for that.
Any advice is welcomed.
Rachel