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Thread: Spinecor and Chiari?

  1. #31
    Join Date
    May 2005
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    776
    In a way it is a very good reply, and encouraging in that they give a very balanced view and there is surely no case of being encouraged to jump on the band wagon.

    Their wait and see advice is based on current knowledge that the majority of curves round the 20 degrees will not progress, so by bracing you have a fair chance you go through a lot of effort and costs for no benefit. I do not know the exact figures (somebody will), but I guess there is a 1 in 5 chance of progression (help! anybody??)

    Still, encouraging, he states very clearly that although he has little experience with scoliosis sec to chiari, there is no theoretical reason it should not work and the few cases he has done have been very succesful. So no discouragement there!

    He leaves the ball in your court, leaving i t to you to make your own decision based on the facts he has given you. And there are advantages and disadvantages to each decision.

    1) Not to brace advantages; no cost, no time lost, no inconvenient brace to wear, 80% (?) chance she'll be ok anyway
    2) to brace advantages; peace of mind, possible improvement from current 23 degrees, possible avoidance of progression and future surgery

    Hard one to call; neither decision would necessarily be a wrong one as there certainly is no certainty.

  2. #32
    Join Date
    Jan 2006
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    513
    I agree. He is leaving the ball in your court. He is saying there is no reason that if you do not wish to watch and wait, since there is a significant chance of progression, you may brace her with Spinecor. He is saying there are no guarantees. If you wish for them to proceed with bracing her in Montreal, I am sure they would agree to see you.
    It is encouraging that they are not trying to tell you anything different than what you have heard, but that there is hope with Spinecor. They have treated 2 patients with Chairi successfully.
    I watched and waited as Rachel progressed from 18 to 38 degrees in 1 year. I would not wait if I had it to do over.
    I do not believe that they are saying that they will not see you in Montreal. If you call and say that you would like to schedule your child for a fitting, I am sure they will accomodate you. Insurance may not pay for it, and the traveling expenses are substantial, but if you don't want to see a chiro, that may be your only option, if you decide to brace. They certainly have the most experience with the brace.
    Best of luck. It is easier if the path you should take is clear cut. I really understand.
    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.

  3. #33
    Join Date
    Sep 2005
    Posts
    195
    Gerbo, just out of curiosity, any idea where the 80% chance of not progressing came from. I realize that she really may never progress, in which case I'm being "obsessive" for nothing. However, due to the chiari, if she does progress, it is generally less likely that any type of bracing will help.

    Convincing my family that this is the best course of action, bracing her without most doctors approval, traveling to another country, paying for it out of pocket based on a treatment that has only been used on two children in a similar situation to her (I'm not sure of how similar the cases were). Is a very hard sell.

    I think at this point I will visit one of the orthos here again. I'm going to ask him straight out his opinion on spinecor, her % of chance of progression, any
    other options there may be to prevent progression, etc.

    I am not due for another x ray until Jul/Aug.
    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

  4. #34
    Join Date
    May 2005
    Posts
    776
    sorry, i really do not know the figures properly, and was hoping that others, with the figures at hand, would confirm or correct. Otherwise an orthopedic doctor needs to advice you on chance of progression in her situation, but i would have thought it was in that order of magnitude.

    With that very inprecise info at hand you have two decisions to make

    1) to brace now (preventative) or wait till there is evidence of progression (which might never occur)

    2) and only after you decided on the first question, and IF you want to brace, try to decide between systems, i.e. boston type or spinecor. I would imagine that the varios pro's and cons about using spinecor in idiopatic scoliosis (as expressed in the spinecor thread) will apply equally to treatment in your daughters situation. I.e, if you believe in the benefits of spinecor in idiopatic scoliosis, it would be logical to have confidence in the potential benefits in your situation. Same for othopedic; if they are prepared to believe in spinecor, they should be able to support you in your situation, if they do not believe in it, or don't know anything about it, they are unlikely to advice you to go ahead with it

  5. #35
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    May 2005
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    776
    http://www.icaa.cc/WCI/articles/000068_7.htm

    this gives some idea of risk of progression

  6. #36
    Join Date
    Sep 2005
    Posts
    195
    Gerbo, Thank you for the article. I do appriciate it.

    Even if I were to decide to go with the Spinecor, if her curve stayed as it currently is, never progressing nor improving, I would really never know if the brace had any effect in stopping progression. I would have placed her into a brace for a period of at least two years with no proof that she really needs it nor that it ever really helped her.

    Also being that it is not a doctor, but me who is making the decision, compliance would probably become an issue. She of course would never know
    that it was my decision, but everyone else would. Would everyone, including myself, be as compliant as we should? I'm thinking REAL world here.

    The hardest part of this dilemma, is that research has shown that scoliosis progresssion sec. to Chiari tends to be rapid and difficult to manage with any traditional brace. So to go into this, with the knowledge that a) she may not need it or b) it may not work if she does need it, makes it appear not worth it. I can argue also the point that because it progresses fast and is difficult to control, she should be put in a brace sooner, rather than later.

    Finally, it all comes back to Cheryls' situation. I don't want to look back and think I should have done it differently, especially given I am aware of all the possibilities. An easy decision it isn't.
    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

  7. #37
    Join Date
    May 2005
    Posts
    776
    Even if I were to decide to go with the Spinecor, if her curve stayed as it currently is, never progressing nor improving, I would really never know if the brace had any effect in stopping progression. I would have placed her into a brace for a period of at least two years with no proof that she really needs it nor that it ever really helped her.
    and

    The hardest part of this dilemma, is that research has shown that scoliosis progresssion sec. to Chiari tends to be rapid and difficult to manage with any traditional brace
    is exactly your dilemma and only you, with whatever support and info you can get, can make a decision which way to go.

    Even if I were to decide to go with the Spinecor, if her curve stayed as it currently is, never progressing nor improving, I would really never know if the brace had any effect in stopping progression
    i don't think this is necessarily true. At first fitting you'll get an inbrace and out of brace xray. The initial correction usually gives a good indication of what outcome you can eventually expect. So; initial fitting > no correction means less likely to have a great impact, but if good correction > better chance it will do something. With other words, you have fairly early on an impression of what the brace is likely to do.

    compliance would probably become an issue
    only time will tell, but i'd expect that if it appears to be working well, compliance will be less of an issue as both of you will feel more motivated to keep going.... We do not find compliance a huge issue

    research has shown that scoliosis progresssion sec. to Chiari tends to be rapid and difficult to manage with any traditional brace
    that would be an argument for trying something to prevent progression and as hardbracing hasn't got a good trackrecord in this situation you might as well try spinecor (nothing to loose)

    I don't want to look back and think I should have done it differently, especially given I am aware of all the possibilities.
    so, considering there is no certainty, you need to decide what "on balance of probabilities" is the decision you are most likely able to live with, both immediately, and "the rest of your life"
    Last edited by gerbo; 03-15-2007 at 03:00 AM.

  8. #38
    Join Date
    Sep 2005
    Posts
    195
    Gerbo, Thank you for being a great sounding board. It's great to have a place to go where others understand the issues and can give unbiased opinions. I have made no firm decision, rather for the moment I'll put it in God's hands and hope that I'll get a sign as to which way too go. (That sign better not take long to come
    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

  9. #39
    Join Date
    Sep 2005
    Posts
    195
    Hello all. I'm not exactly sure if this was a sign from up above, but alot has happened since I last wrote.

    After recieving the email from Mr. Mills at Spinecor (posted previously on this thread), I decided to wait and see what happens. A few days later I recieved an email from Dr. Brian Oulette from Georgia. Apparently he is working with a chiropractor here in Miami and Mr. Mills had told him about my situation and he contacted me.

    Today my husband and I went to see him for a consult on the Spinecor brace. I found him very knowledgable and willing to discuss many aspects of my daughter's situation. Much more so than any of the orthopedic MD's have done. Because Emily's case is very complicated, he agreed to contact Dr. Rivard or Colliard in Canada to discuss the case and help me decide if a brace is necessary at this point or if I can wait a little longer since at this point we are unsure if her scoliosis is progressing.

    I have made no firm decision yet as to which way to go, but I feel much better about knowing I can get the brace here in Miami, with some input from the Dr's in Montreal. If anyone has had any experience with Dr. Oulette, please let me know your opinions.
    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

  10. #40
    Join Date
    Sep 2005
    Posts
    877
    That should give you some piece of mind. Sounds like you are handling everything well. Haven't heard anything negative about the chiro from Georgia. In fact, there are a few people who use him. There was a girl named Lauren who used to come on here. Her Mom's name is Lori. They seemed pleased with him.
    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

  11. #41
    Join Date
    Mar 2006
    Location
    DFW, TX
    Posts
    159

    My daughter has Chiari and used Spinecor

    Sent you a private message. Messages too long and kept starting over on thread and on private. will reply more later. Your info has helped me.

  12. #42
    Join Date
    Mar 2006
    Location
    DFW, TX
    Posts
    159

    Chiari and Spinecor

    Just wanted you to know all these people on the forum, Spinecor parents, kids, and others were very helpful. Many on this thread were helpful in our decision to go with Spinecor. I certainly would try if bracing is recommended. We didn't have success, but our situation was different, being older and at a higher curve, and not knowing of Chiari until after more progression. I hope that if you go to bracing it is an option for you.

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