Results 1 to 10 of 10

Thread: 12 YO Son Needs Surgery

Hybrid View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Join Date
    Nov 2010
    Location
    Spring, TX
    Posts
    29

    12 YO Son Needs Surgery

    Hello all, I'm new here but have been reading the threads on here for about a month now. My 12 year old son has had chiari malformation and scoliosis since he was a cute little toddler. We noticed the not so straight spine then through doctor visits found the chiari. He's had decompression surgery and stint inserted back when he was 3 & 4 yrs old. He is growing like a weed and we were told he'd need the surgery for rods & pins now. Apparently he has large growth plates in his spine which tell the docs he will be tall and will not stop growing until he is at least 18 years old. His scoliosis is not anywhere from 53-59 degrees (three orthos read the same x-ray differently 53, 54 & 59), and the newly formed lower curve is at 33. He has started having difficulty breathing, he says it's normal but it's not. They even stopped him while he was doing his MRI Sunday and asked if he was okay, he told them yes so they asked why he was breathing so heavily and he said that's just the way he breathes. It's progressively gotten worse, I don't understand how he doesn't see it. He's also started complaining of headaches and some back pain. Back pain was bad enough one day that he sat himself out of a baseball game. He has a high tolerance for pain so now that he's asking for aspirin it really is concerning me. He says he has numbness in his right arm, not completely numb but numb enough that he tells people to hit him as hard as they can in that arm because he doesn't feel it too much-BOYS!!!!

    I'm at peace with the need for surgery, my hubby is really struggling with it, and my son thinks he is a macho man and can handle anything. I really hope he keeps up the positive attitude. His ortho took him out of football but said baseball was fine. 2nd opinion said let him play football until he has surgery, but by that time season was over so he missed it anyway. He was HEART BROKEN when football was taken away. He is also not too happy that he will miss the spring season of baseball.

    Whoever thought of putting this forum together is AMAZING! I have read through so much of the threads and have formed my questions for my ortho from here. I couldn't put into words what I wanted to know before, and through reading through the information posted I've got my list of questions. And it's a short list so that I don't drive the ortho crazy!

  2. #2
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    If you guys live near a shriners hospital for children they provied orthopedic care at 19 hospitals They have the best spine surgeon in the world
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  3. #3
    Join Date
    Jul 2009
    Location
    Missouri
    Posts
    67
    Hello, My son is 11yrs old and just had surgery 8weeks ago. My son was diagnosed at 4 with chiari,syringomyelia and scolio, you said your son had a stent? may I ask was it for his spine or the flow in his head? My son had a syringopleural shunt last year his syrinx was not going away after 2 decompressions. I was told when my son was 4 because of the syrinx his scolio would progress and it did even though he was braced off and on. My son has spinal cord damage is weaker on the left side ,and lost partial feeling on his right... Was yours sons MRI to check his spinal cord/brain or the spine? I would make sure they are checking for syringo before proceding to a spinal fusion.
    Kelly
    mom of Cameren 12 yrs. old
    Chiari,retroflex odontoid,syringomyelia,scoliosis
    Chiari decompressions 6/2005,5/2006
    Syringopleural shunt 6/2009
    Boston Braced off & on 6.5yrs
    scoliosis surgery- 9/15/10 T4-L4 Dr. Bridwell
    Fell & broke finger,surgery 3/2011

  4. #4
    Join Date
    Nov 2010
    Location
    Spring, TX
    Posts
    29
    We do have a Shriners in Houston, I looked into it when I first found this site. The problem is that it's 3-4 weeks before we see a doctor and in the meantime he is literally growing before my very eyes. It's strange how fast he seems to be growing considering my hubby and I are not very tall at all, and Alex just turned 12. He already grew an inch in the past month and all i can think is what has that done to his scoliosis?

    CamsMom, my son has had 3 MRIs this year two to check if there was any fluid build up and one to check the flow of the fluid. His stint was inserted into a cyst of fluid in his spine when he was about 4 yrs old. The cyst had the small area inside your spine open to the size of a quarter (normal size is the size of a period at end of sentence). Neuro said it collapsed his spine so quickly and fluid gushed out when stint was inserted. He had severe headaches which docs told us was similar to brain freezes because it collapsed so quickly he got some air in his spine. To this day he doesn't get brain freezes when he drinks something cold, he gets the freeze/pain in his spine. STRANGE!!!! It's been that way so long he can't tell you what a brain freeze feels like but he can tell you what a spine freeze (that's what he calls it) feels like.

    His neuro surgeon said that as far as his Chiari it really looks good and there's no need to go in and do anything to it. He has a SMALL (1cm) build up in his lower back but neuro said he would have to go into his spinal cord in order to do anything with it. He said that would be too risky, he wouldn't suggest it since it's such a small build up, and it has not progressed at all in size in the last few MRIs. You said your son has had spinal cord damage and has lost some feeling in his limbs, how much feeling has he lost? I've brought up the numbness to the docs and they do agree it's not the scoliosis, but the Chiari, but neuro surgeon said he's gonna talk to the ortho about it and we'd hear back from them.

  5. #5
    Join Date
    Jul 2009
    Location
    Missouri
    Posts
    67
    My sons syrinx was a holocord syrinx, entire spinal cord width and diameter, his shunt is at T7-T8 they did go into his cord and make a incision to place the tubing to drain the syrinx it has drained about 75 % , I was told the Syrinx was causing the scolio not the chiari, also the syrinx damaged the spinal cord causing the weakness in his entire left side, when they did his shunt surgery he has numbness on right leg , buttock and back... so now both sides are affected but before the spinal fusion he could walk,ride a bike ,run all with some difficulty but un-assisted .
    He is taking longer then normal time to recover from his spinal fusion,went yesterday for his 8 week checkup was told he still has to use walker for another 2 months and we scheduled a 4 month followup. When he tries to walk without his walker he is really struggling and his legs shake.
    Kelly
    mom of Cameren 12 yrs. old
    Chiari,retroflex odontoid,syringomyelia,scoliosis
    Chiari decompressions 6/2005,5/2006
    Syringopleural shunt 6/2009
    Boston Braced off & on 6.5yrs
    scoliosis surgery- 9/15/10 T4-L4 Dr. Bridwell
    Fell & broke finger,surgery 3/2011

  6. #6
    Join Date
    May 2010
    Posts
    47
    Hi!

    Just wanted to chime in and say it sounds like your son has a great attitude and that is a LOT of the battle. Most kids do just great with this surgery. And from the posts I read from adults on this forum, they mostly do very well, too.

    My daughter was fused in June, and at her six-week appt she got the go-ahead to run. She ran on the Cross Country team this fall and went to every meet to run a 4K and missed only one or two practices (they ran for miles at practice after school). She did not play fall soccer (her main love), but we are hopeful that she will get the go ahead to play this spring. It is really tough to tell an athlete they have to sit out, I know, but I think these athletes just find something . . . like running, in my daughter's case. And before she could run outside, she was in the pool, running in the water.

    Hang in there! I also think athletes probably just generally have a better time with a major surgery like this, so your son should be in great shape (emotionally and physically) for it.
    Jill, mom to 14-year-old daughter who had spinal fusion surgery (T3 to L1) June 21, 2010. (Pre-op curves 52T and 30L.)

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •