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.
Wow, ur little one and ur family has been thru a lot already.....and u r right she is strong and doing well, I am amazed too at how well she did as I was in ICU for 2.5 days...and in the hosp for 3 more....
Do u know if she had a full decompression with a dura plasty?...many times they do not do a full one and r more conservative with children...just wondering.
Try not to let her bend or lift, pick things up.....she will compensate and listen to her body naturally more so than an adult...we think too much and they react....so she will not do something if it is causing her pain.
Her Dr. did do the surgery with dura plasty. He said that was the way he did ALL his decompressions. He claims that he does 2 to 3 a week.
Will her outcome be worse bc she got one with dura plasty??
How long does it take to start feeling "normal" again?
I'm not letting her do a lot..she gets so mad at me. I guess I'm just really paranoid!
She was checked for tethered cord.. on her orginal MRI in 2010 and then again on this last MRI and they did not find it.
Is it possible for her to get symptoms from the surgery that she didn't have before..I guess I worry about that too.
Hi...No having the dura plasty is actually better,...those that have the more conservative boney decompression usually need a redo...as the less invasive surgery does not get the issue corrected ....it is not enuff to restore CSF flow...
Oh deff it is possible to develop other related issues as a result of having surgery, but until u see signs, don't go looking u will drive urself crazy.....
May I ask what type of dura patch she got?
I am not sure we ever feel "normal" again...but we do begin to feel better....and it changes during the recovery...there r stages we all go thru...and since ur DD was so quick to regain her ability to sit up eat and got out of the hospital so fast I can only imagine she may go thru the stages faster too!!
Try to relax MOM...lol...she will let u know if she is having a problem.
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