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Thread: Daughter 16 has syrinx & needs scoliosis surgery...anyone with syringomyelia too?

  1. #1
    Join Date
    Jan 2010
    Location
    mississippi
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    Talking Daughter 16 has syrinx & needs scoliosis surgery...anyone with syringomyelia too?

    My daughter has a rare condition called syringomyelia. Diagnosed at 7 yrs old. Scoliosis began prior. Now she is 16 and will be 17 in august. Syrinx is the worry. I cant seem to find any teen out there who has syringomyelia and had scoliosis surgery. Her orthopadeic surgeon is wanting to do the surgery right away. I am just so scared. I hope i can find someone out there in her shoes. Thank you!

  2. #2
    Join Date
    Mar 2010
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    2,004
    Maybe you have seen it before http://www.scoliosis.org/forum/showt...ghlight=chiari
    Ostheopats also thinks that medullar traction could cause scoliosis and some diseases.
    I have talked with that people and they seems to be sure that this surgery is the way to finish with medullar traction. I don't know what to think.

    Good luck with your daughter.

  3. #3
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    I would suggest Spinekids. It is a forum similar to this one, except it is mostly kids/teens. I know at least a few of them have dealt with a syrnix.

    Good luck.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  4. #4
    Join Date
    Sep 2005
    Posts
    195
    My daughter,12, has chiari,syrinx, and scoliosis. She was diagnosed 7 years ago and immediately had decompression surgery (brain decompression). No scoli surgery yet, actually seems like we may avoid it all together. Has your daughter seen a neurosurgeon? Protocol is for the syrinx to be evaluated and if necessary decompressed prior to the scoli surgery.

    There have been a few parents of older children with the three conditions over the years. Do a search of "chiari", "syrinx", "syringomyelia", and look in the "Other forms" section. I realize your daughter may not have chiari, but they often go together so a search with it may help you find more info.

    You can also go to asap.org for more information on syringomyelia.
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  5. #5
    Join Date
    Nov 2010
    Location
    Spring, TX
    Posts
    29
    My son has chiari malformation and scoliosis. He's had decompression surgery when he was a toddler, and a year later had a stent insterted into his spine to relieve the fluid build up in his spine. At that time his scoliosis was starting to progress but the stent helped the scoliosis and corrected it some. He recently had titanium rods inserted into his spine, December 22nd.

    His Neuro surgeon was hoping that by redoing the stent (that had clogged up with tissue) it would again help with the scoliosis, but it had progressed too far and his orthopedic didn't expect enough change to hold off on the surgery. So he had the two for one special and had both procedures done on the same day. He is 12 and handled it all like a champ, he does have a high pain tolerance (you'd have to see it to fully understand what I mean) so I'm sure that helped but he bounced right back.

    He has experienced numbness, first from the chiari and syrinx build up that he's had for some time, then again after this last surgery that we have been told may get better and may not. I know there are other moms on this forum whose post I read through when my son was preparing for the surgery. If you have any questions feel free to ask away!

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