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View Full Version : Scoliosis caused by Chiari/Syrinxes



emarismom
3rd August 2005, 02:53 AM
My daughter was diagnosed with Chiari/syrinxes/ and scoliosis last Oct.
Her curve at the time was 28 degrees and she was only 5. She had decompression surgery to address the Chiari/syrinxes. They have both improved greatly. Her scoliosis was at 26 degrees at the 6 month post op visit with the orhtopedic. Does anyone have a similar situation or opinion on the liklihhod of the curve improving? If the curve doesn't improve more significantly by next visit, we may begin bracing.

Thanks,
Michelle

shortgirl
3rd August 2005, 05:16 AM
What exactly is Chiari/syrinxes?

sins
3rd August 2005, 10:26 AM
One of our moderators Kayla has chiari and she'll drop by and try to answer your questions later on.Welcome to SSO by the way.I have read medical publications where once decompression was acheived, the scoliosis situation resolved itself over time.Kayla has had surgery for a severe case of both.
Sins

Jonny
3rd August 2005, 04:32 PM
Welcome Michelle :-) yes, Kayla has experience with spinal fusion for scoliosis and repeated shunts. I'm afraid I don't know about the specifics of scoliosis caused by Chiari malformation but I'm sure others (like Sins already has) will be able to help.

Kayla
3rd August 2005, 09:58 PM
Hey Michelle, I am Kayla. I have had 13 surgeries due to Chiari/syringomyelia and scoliosis. The reason the scoliosis forms is because with syringomyelia the fluid is trapped in the spinal cord and as you grow the spine grows, the fluid builds up and the spine can't go straight. That's how it was explained to me anyhow.

andrea
4th August 2005, 08:45 AM
Hi Michelle and welcome to SSO. I'm sorry to hear of your daughter's diagnosis. Unfortunately I don't know much about Chiari, but it sounds like Kayla will be around to help should you have questions. My daughter Erin is 2 and is currently in a brace for ideopathic scoliosis, although she will go back into a cast in Autumn. We're in London, UK, and being treated at the Royal National Orthopaedic Hospital in Stanmore.

Where are you based?

emarismom
4th August 2005, 10:42 PM
Thanks for all the replies. Kayla, I understand all of the reasons for the Chiari/syrinxes/scoloisis. Unfortunately I have spent all of my free time for the last 9 months learning everything I can about these disorders. What I'd like to know is how your scoliosis was effected by your decompression surgeries. Why did you need so many surgeries? Did the syrinxes fail to drain or recede after the surgery? Or were there other complications that caused the need for so many?

Thank you for responding.
Michelle

Kayla
4th August 2005, 11:46 PM
My scoliosis always had to be put off for a while because I was having surgery like every 6 months or so, so there was no time to deal with my scoliosis. When I finally got my brace, it just went on and off because if I had a surgery i couldn't bear to have it on. That's when it just became to severe and I had to have surgery, but then even that had to be put off for a little while because my orthopod wanted to make sure I was doing well. My chiari story is a rare one and way to long to explain. My mom knows more about it but not that causes, I have had many brain hemmorages (sp?) That is why I have had a lot of surgeries. Also because of the syrinxes, I have had fluid build up many times and now I have four shunts and two vaulves for it. Unfortunatly two shunts don't even work anymore but I am doing fine. Anyways if you have any more questions feel free to ask!

emarismom
5th August 2005, 12:17 AM
Kayla,

It really sounds like you have been through alot!! I'm so glad to hear how positive you are regarding all of it. You're quite a trooper!! How old were you when the diagnosis came? Have you had alot of symptoms related to the syrinxes? I guess I should be quite grateful that my daughter hasn't had any symptoms related to the syrinxes. Hers went from C3 to T-10. It was really quite impressive on the MRI films. Right now we are waiting to see what the scoliosis does. Because she is so little, she's six now, we will be monitoring it for many years to come. It is really overwhelming.

Michelle

Kayla
5th August 2005, 12:48 AM
I was 10 years old when I ws diagnosed. I got headaches when the fluid would build up. Yeah if she's only six it's a good thing to just monitor the scoliosis.