Page 1 of 2 12 LastLast
Results 1 to 15 of 16

Thread: 8 year old son with scoliosis

Hybrid View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Join Date
    Jan 2005
    Posts
    7

    8 year old son with scoliosis

    Hi,
    I have an 8 year old son who has had scoliosis since he was 4. He had a chiaria malformation with a syrinx on his spine.He has a thoracic curvature that has gotten worse. Anthony had been wearing the Charleston Bending brace for 14 months. We have recently changed to the Providence Night Brace. I was wondering if anyone else has worn the Providence and what results occurred. He is basically wearing this brace so his curvature doesn't get any worse and he will probably have the rod surgery when he is around 12.
    Thanks,
    Gloria
    Last edited by Gloria Pallante; 01-26-2005 at 08:01 PM.

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Gloria,

    Welcome to the board.

    Please consider getting another opinion about your son's scoliosis from a pediatric ortho who understands the connection between neurologic issues and scoliosis. Has he had decompression surgery for his Chiari problem? Has they syrinx gotten bigger? How often does he see the neurosurgeon for followups?

    You didn't mention if he has congenital malformations in the bone structure of the spine, but I'm assuming he does not. If he does, bracing will probably be a non-issue. Bracing can offer external support, but can't directly support a spine that was not formed correctly to begin with.

    Rod/fusion surgery is never to be taken lightly. Good luck with your choices and I hope your son's scoliosis and Chiari issues stay stable for a very long time.

    My best,
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
    Join Date
    Jan 2005
    Posts
    7
    Hi Carmell,
    Thanks for your reply and information. He does see a ped. ortho every 4 months. Anthony had the decompression done when he was 4. The syrinx hasn't gotten any bigger. We haven't seen the neuro for a few years because he said it wasn't necessary. He does know that Anthony's scoliosis has gotten worse. Maybe I need to contact him again.

    Gloria

  4. #4
    Join Date
    Feb 2005
    Location
    San Diego, CA
    Posts
    6
    MY DAUGHTER, 6 WAS ALSO DIAGNOSED AT 4 YRS. SHE ALSO HAD THE CHIARI (AS DID HER DAD), AND THE CORRECTION SURGERY AT 5YRS. SHE HAS BEEN WEARING A BRACE FOR 1-1/2 YRS TO NO AVAIL. I AM NOT FAMILIAR WITH THOSE BRACES, BUT SHE DID HAVE A TORSO-TYPE. UNFORTUNATELY IT DIDN'T WORK, SHE IS SCHEDULED FOR STABILITY ROD (THORACIC FUSHION) MARCH 17. WHAT IS THE DEGREE OF CURVATURE? WAS THE CHIARI HEREDITARIAL? DID THEY DISCUSS SURGERY FOR THE SYRNIX CORRECTION, AS I HAVE BEEN TOLD THAT CURVING MAY NOT SUBSIDE WHILE THOSE PERSIST. WE ARE THE LUCKY ONES...WE ARE IN SAN DIEGO AND RECEIVE MEDICAL ATTENTION FORM THE STATE UNIVERSITY PROGRAM SPECIALISTS (UCSD, UCLA). I DONT MEAN TO ALERT YOU, BUT TAKE A SECOND OPINION, ALWAYS! ASK ME ANYTHING, I'LL HELP IF I CAN!
    Pauline ... mom of Rhegan Ann

  5. #5
    Join Date
    Jan 2005
    Posts
    7
    Pauline,
    Hi, thanks for your reply.
    When Anthony had the chiaria decompression, his curve was only 25. The highest it has been was 45 before the Charleston Bending brace in May 2003. At this time they said that draining the syrnix would be too dangerous. He had a MRI two years ago and the syrnix was the same size. We were also told that because of the malformation, his curve could get better, stay the same, or get worse. It has gotten worse over the years. I had to get a new ped ortho because ours moved to another state, and he agreed with what the first one had been recommending. We don't go back until May.
    Anthony has been in the Providence since Jan 05.
    Anthony is adopted so I don't know if this is hereditary.
    Can you give me details about your daughter's stability rod? Thanks.
    Gloria

  6. #6
    Join Date
    Feb 2005
    Location
    San Diego, CA
    Posts
    6
    Gloria,
    Rhegan's curve had originally been diagnosed at 40+ degrees. Due to unresponsive nerve, the rt leg, she was given the MRI when they found the Chiari. The University specialists specfically told us that the curving would not stop until the syrnix subsided. Although she still has trace amount of syrnix, her fluid flow is acceptable, but the neurosrgn did contemplate drainage for future health. Just over year later with a growth spurt, here we are. She has 2 curves. Thoracic, the worse one at 70 degrees. Bracing did not work, so to preserve her health thru puberty, Dr. Newton (orth surgn) will place 1 rod on the large curve, slightly straightening, de-rotating and stabilizing 3-4 vertabrae. The above curve is in hopes to follow it. This was just scheduled for March 17, so I'm still putting it all together. We were agressive in bracing, but lost. This is a less evasive way of keeping control til full growth is reached. Then, depending, a final surgery may or may not be needed.
    My strong opinion is that , if at all possible, you see a different specialist in a different facility. Rhegan was also born with a serious heart condition. This also diagnosed & correctd by the surgeons at UCSD, so our faith lies in them!
    Will let you know more as I learn it! Dont' worry, the technology is there, and improving every day.
    Pauline ... mom of Rhegan Ann

  7. #7
    Join Date
    Jan 2005
    Posts
    7
    Pauline,
    Thanks for the information. Good luck with Rhegan's surgery. Is this a growth rod or a permnant rod? How long will her recovery be? Keep me posted. I appreicate your time and knowledge.
    Gloria

  8. #8
    Join Date
    Sep 2003
    Location
    Florida
    Posts
    3
    Hi Gloria,
    I received your private message asking for an update on Leah and sent a reply, but message tracking shows you have not opened it yet, so I will write here also in case you did not receive it.

    Leah is now 9 and still wears a Boston brace 22 - 24 hrs/day. Her 2nd brace has been more effective, reducing curve to 35 deg. The orthotist explained he will cast Leah to make the next brace, to put more pressure on the curve. Your son is lucky a night brace gives good correction. Our orthopedic surgeon wouldn’t consider night bracing. We're happy she is avoiding having to wear the Milwaukee brace! A study I read showed some Chiari-Scoliosis kids' curves improved after decompression, but collapsed again during adolescent growth spurts and some needed spinal fusions. If Leah’s curve holds at 35 deg. during her growth spurt she may avoid surgery. I am always looking for info about new scoliosis treatments and want to have Leah evaluated for VEPTR (titanium rib implants). If bracing would not continue to control her curve, I would pursue this option rather than have a fusion done before she has finished growing.

    Leah still has an annual MRI and checkup with her neurologist to monitor the syrinx and csf flow. Her last MRI in Aug 2004 showed the syrinx has collapsed to a very thin strip. The neurosurgeon said it will not go completely away but is as small as it can get and no longer causes nerve damage. I don’t know how often the ns will continue to see Leah as she gets older, but it is reassuring to see a good MRI result.

    Best wishes for success with the Providence brace.
    Barbara

  9. #9
    Join Date
    Jan 2005
    Posts
    7
    Barbara,
    Thanks for your reply. I must have deleted my private e-mail. Sorry. I will need to call the neruo and ask for a new MRI. Before Anthony's first bracing, May 2003, his curve was steady at 25 for a long while and then within thenext 4 month visit , the curve shot up to a 45, so that is why we did the brace. Started off with the Charleston night brace. We worked well but our dr moved andhad to find another dr. He likes the Providence better. We shall see in May if it has worked. I totally dislike this waiting game. Thanks again. If you find out any other infor, please let me know. I am not familiar with the VEPTR. Canyou give me some details on that?
    Thanks,
    Gloria

  10. #10
    Join Date
    Feb 2005
    Location
    San Diego, CA
    Posts
    6
    Gloria,
    It is difficult to wait, but bracing is the best way to go...the objective is to keep that curve stable, so being able to wait is kind of a blessing!

    Rhegan's rod will be stabilizing thru growth only, not permanent. The surgery takes 4 hours, icu for a few hours and hosp stay for about 4 days. Home for bout 10 dys. We may wheel chair to and from school, depends on her (she's an agressive healer, was only in the hosp for 2 days after her chiari decomp!). She is expected to have it for 4 years. At that time a final surgery of reset & light fushion. This rod is to provide less abrasive surgery later, her curve is just too strong to brace. Doesn't sound too bad, does it?

    Keep up the faith!
    Pauline
    Pauline ... mom of Rhegan Ann

  11. #11
    Join Date
    Jan 2005
    Posts
    7
    Pauline,
    NO that doesn't sound bad at all. I think I can handle that.lol I will have to remember the stabilizing rod in case our dr suggests soemthing in May.
    Please keep me posted and the best of luck to all of you.
    God bless,
    gloria

  12. #12
    Join Date
    Sep 2003
    Location
    Florida
    Posts
    3
    Hi Gloria,
    I learned about VEPTR (Vertical Expandable Prosthetic Titanium Rib) from reading posts by Carmell, who also responded to you in this thread, and by searching the internet. It’s a procedure in which telescoping titanium rods are attached vertically between ribs to stabilize the thorax and help improve lung function and growth for kids with structural chest deformities. The rods are expanded as the child grows. For a young child with scoliosis, this is an option to control and possibly correct the curve without undergoing a spinal fusion. You can read more about it at www.veptr.com
    http://www.news-medical.net/?id=4841
    http://www.christussantarosa.org/svc...n_titanium.htm

    and will find a picture at this site: http://www.synthes.com/html/VEPTR.5203.0.html

    I want to find out if Leah’s lungs are developing normally, so she has an appt. next month for a pulmonary function test, and will see a pediatric pulmonologist.

    I don’t like waiting either, and I don’t like to think about all the years in the brace still ahead before Leah has finished growing, and the unknown of what the curve will do in her adolescent growth spurt. It helps me to do research on the internet, it’s encouraging to see advances being made in treatment and surgical technique.
    One other website you may be interested in is
    http://www.chiari-syringo-news.com/index.htm
    Click on “Search the Website” and enter the keyword “scoliosis” it will take you to articles about chiari-syrinx related scoliosis.

    Best wishes,
    Barbara

  13. #13
    Join Date
    Jan 2005
    Posts
    7
    Barbara,
    Thanks so much for the information. Those websites will keep me busy for awhile. I do appreciate your time and help.
    Gloria

  14. #14
    Join Date
    May 2005
    Location
    boston
    Posts
    2

    coping with scoliosis

    My son was diagnosed with scoliosis in the fall. He is almost 9 years old. We had smooth sailing for a few months and now, everything seems to be falling apart. He is angry and upset - doesn't feel normal. It's really affecting our whole family. His worse curve is at 38 degrees. he has been wearing a brace since September. Now it appears that his chest is rotating in it and is starting to deform. We are being told that, at this point, we are just trying to delay the inevitable - surgery. Does anyone have any thoughts, ideas, advice......Thanks so much. I wish I had found this site a few months ago.

  15. #15
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi etp,

    Is your son seeing a PEDIATRIC ortho who specializes in scoliosis in young children? Can you talk to the surgeon or his/her assistant? They need to know how the emotional state is not doing well.

    Also, a 38 degree curve is considered moderate. If his chest and spine are rotating significantly, you may need to talk to the doc about options to fix that. Make sure you get more than one opinion. Scoliosis in young kids is such a unique thing.

    Take care and let us know how things are going.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

Posting Permissions

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