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Thread: Spinecor and Chiari?

  1. #1
    Join Date
    Sep 2005
    Posts
    195

    Spinecor and Chiari?

    Hi all,

    My daughter has scoliosis secondary to Chiari/Syrinx. She has been decompressed and currently the Chiari has been resolved and the syrinx is greatly reduced with no cord expansion. Her scoliosis is at 23 degrees now.
    Down from 28 pre decompression. Her curve decreased after surgery and has remained stable for two years 5 months.

    My worry is that as she grows, if she does progress, because of the Chiari/Syrinx, the use of traditional braces has not been shown to be very effective.

    I have read the Spinecore website and found no indication that it CAN be used with this type of scoli. Has anybody with this type of scoli ever used the spinecor? If so what were the results? The idea of continuing to watch and wait seems ridiculous knowing that if progression starts, fusion surgery will probably be unavoidable.

    I don't want to brace her if it is not necessary, and will not put her in a rigid brace until there is no other choice. However, I also want to be proactive and prevent progression if there is any way possible.

  2. #2
    Join Date
    Aug 2006
    Posts
    369
    Emarieson

    If I were you I would go right to the source. Either E mail or call Dr. Rivard in Montreal. He will be very open to talk to you. He will also tell you his HONEST opinion.
    Christine
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  3. #3
    Join Date
    Sep 2005
    Posts
    195
    This morning I did send them an email. I assume I will not get a reply until Monday. I have been researching alot today and it seems more than likely, they will not be willing to put her in a brace. I do know that if they will, I will only go to an orthopedic to have her evaluated and fitted. I will not go to a chiropractor, so I guess I will be traveling to Montreal. It's a long way for me as I live in Miami.

  4. #4
    Join Date
    Jan 2006
    Posts
    513
    I know what you mean. We live in Mississippi and have been traveling to Montreal for the past year.
    It has been well worth it.
    Rachel had no chance of avoiding surgery with traditional bracing.
    She is holding at 22 degrees, down from 38 degrees.
    Best of luck!
    Cheryl
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  5. #5
    Join Date
    Aug 2006
    Posts
    369
    When we were there March1 Dr. Rivard said he had just seen a child from San Francisco. He was fixing a mess a chiropractor had made in bracing.
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  6. #6
    Join Date
    Aug 2005
    Posts
    21

    emarismom

    My son has a small syrinx on the thoracic side, we did not have to do sugery or anything yet. He was placed in spinecor in november last year and his cuve went down from 31 to 3 degrees in brace, so I think it's worth to try it.
    Take care
    Adriana

  7. #7
    Join Date
    Sep 2005
    Posts
    877
    Adriana,

    that is wonderful!!!
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  8. #8
    Join Date
    May 2005
    Posts
    776
    seems to me you have little to loose (but money and time) by trying.

  9. #9
    Join Date
    Sep 2005
    Posts
    195
    I am going to see what the response is when I get one. Adriana, that is great about your sons curve. How old is he?

    Do you think that my insurance will at least cover the cost of the brace and the doctor visits? I have a very good PPO. At least that would help offset some of the costs. Is it easy to get appointments with Dr. Rivard, or does it usually take a while? I would have to plan it for the summer, as there is no way I can get away sooner.

  10. #10
    Join Date
    Aug 2006
    Posts
    369
    We also have good ins. they covered up to our durable medical max ($850.00 I think) then cover all of our x rays and OV's. We were have trouble getting any coverage when we were considering going to New York. My husband is also going to check with our accountant to see if we can get deductions on our taxes for travel expenses to Montreal. Wouldn't that be get. Has anyone else done this?
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  11. #11
    Join Date
    Aug 2006
    Posts
    369
    Adriana

    I did not realize you had such great results in Spinecor. Congrats.

    Just a suggestion to everyone: It would help me and I think alot of people if you were to do a signature that way I can keep track of everyone, what they are using and their results. Just an idea.....
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  12. #12
    Join Date
    Sep 2005
    Posts
    877
    Christina,

    That is a great idea. I am having trouble keeping track of people and their history.
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  13. #13
    Join Date
    Aug 2005
    Posts
    21

    emorismom

    My son is 9 years old now. He was diagnosed with scoliosis when he was 7 and a half. He had a 20 degree curve. He didi competition gymnastick for about 3 years. We went to Shriners, the orthopedic didn"t want to put him in spinecore, his curve was then 26 degrees and he ordered a providence night brace. My son will wear it for a half an hour and start crying so we will take it off. We have tried Asco, massage and medical gymnastick in Europe, nothing seeded to help, his curve was at 31 degrees,when I start reading your spinecor thread more seriously and decided to go to Montreal. Spinecor brace was the only thing that worked for us and the prayers.Of course I was advised not to use spinecor by our doctor, so I didn't see him anymore.
    Christine
    Sorry I don't really know how to do a signature, I will try.
    Adriana, mom to LUke 9 years old 3 degree thoracic curve in spinecor brace and Mark 7 years and a half no scoliosis yet
    Saw dr Rivard since Nov. 2006, he is wonderfull

  14. #14
    Join Date
    Sep 2005
    Posts
    195
    Adriana, so everytime you need a follow up, you travel to Montreal. If your son were to progress in the future, what would you do? Would you be able to have surgery in Montreal with Dr. Rivard or would you use a doctor here in the states? Did your doctor here refuse to see your son again because you are using the spinecore brace?

    Are there ANY orthopedic doctors in the US that use spinecore? If so where
    are they?

  15. #15
    Join Date
    Sep 2005
    Posts
    877
    Although most orthopedics in the U.S. do not recommend the Spinecor, none of them have been nasty about our using it. For Nicole who has the text book adolescent idio type, they know that a hard brace may not work for her anyway given her age and high curve. They don't recommend the Spinecor, but they respect our decision to do what we feel we need to do for Nicole.

    I believe most of us who live in the States and travel to Montreal for Spinecor, would stay in the States for surgery. Don't want to speak for others, so correct me if I am wrong. I, for one, am surrounded by at least 6 amazing hospitals that are within an hour or two away. Children's, Shriner's, DuPont, and many in New York and Maryland, just to name some.

    Melissa
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

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