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Thread: Spinecor Brace on 9/16

  1. #16
    Join Date
    Sep 2005
    Posts
    877

    Best of Luck

    Quote Originally Posted by Shebee
    Hi all…I just wanted to check in. We have been traveling in the car for over 24 hours all together. Out of three days, we have been in the car for over one. My daughter and I drove to Chicago to see Dr. Pappas for evaluation and fitting of the Spinecor brace. Once we got to Chicago, I decided if I thought anything was not “right” or not going to help, we would walk out the door and go back home.

    Our doctor was wonderful and well worth the long, long drive and expense. He was very knowledgeable and professional while being a lot of fun. Our daughter has a 20 degree lumbar curve. Taking a wait & see attitude does not seem like a good option.

    Fortunately the top of her spine is not curved, too.

    The fitting of the Spinecor brace took 5-6 hours, but time passed quickly. It takes a lot of time to get this brace fitted correctly. My daughter says it feels like she has seat belts strapped all over her body. LOL!

    My daughter was great. After our appointment, we headed back toward home. After driving for hours, we finally got something to eat and found a hotel. She cried a lot that night. I almost told her to “brace up,” but I soon realized that getting a brace is a very traumatic experience even when you are prepared for it and willing to wear it. The emotional aspect is a lot like losing a loved one….you go through many different stages. Unbelief…mourning….anger…acceptance. She went back and forth and is still working through these stages. She is now leaning more toward acceptance at this point. She is awesome.

    She has been in the brace now for a few days and said that it felt strange to have it off. It is already becoming a part of her.


    She is very upset about her clothes, finding it a bit difficult to hide the brace and still remain fashionable. J

    I am exhausted. I’ll write more later about our experience. I am convinced that we have did the right thing.

    Shebee
    Shebee,

    My wife and I can relate to your emotions and some of the experiences your daughter is going through. As you know, we opted for the Spinecor brace and had a similar experience with Dr. Deutchman and his staff. It made a huge difference. My daughter is scheduled for her first follow up visit on Tuesday, 10/4 and has been in the brace for 30 days. For us, we bought her new Fall clothes after bracing and bought them a little bigger than usual so that was not as traumatic. For Nikki, the biggest issue is taking it off for 1.5 hrs. then putting back on. Now if she was in a hard brace, she wouldn't have that option and we'd be facing a different problem altogether. It just shows everything is relative. For us, the problems we are dealing with are preferred. I think the resilience of your daughter is similar to that of Nikki's and is remarkable. As a fellow parent, I think your resilience and dedication is worthy of praise, as well. It is very hard for us as parents while we watch our kids go through this. All we do is make the best treatment decisions we can for them and hope for the best. For us, that means avoiding surgery as the last possible option. In the end, our doubts and exhaustion will hopefully give way to the joy of our kids' health being restored. Keep the faith.

    Ed

  2. #17
    Join Date
    Aug 2005
    Posts
    25
    I think it is wonderful of everyone to be concerned. I'm sure you are doing the right thing for your daughter.
    I just saw this article that you might want to look at about the spinecor versus Cheneau brace. Pediatric Rehabilitation 2005 July-Sept;8(3): 199-206. I just read the abstract and have not downloaded the entire article.

    Gerbo,
    My daughter has the Boston Brace and the correction is to Lumber 5 degree and Thoracic 5 degree. We had the fitting at shriners. They are wonderful. I have her following the elise Miller yoga for scoliosis.

    I will definitely review the torsion exercises.
    Thanks.
    HIMOM

  3. #18
    Join Date
    May 2005
    Posts
    776
    very difficult to judge how authoritive this dr weiss is. I think spinecor backers would say he didn't use it properly for it to help, as they emphasise need for proper training before using it

    my feeling is that any brace can work as long as it achieves good correction and is acceptable enough to patient for it to be worn long enough, so with a good initial correction with the spinecor I'd trust it to do the job.

    interestingly on german forums it is claimed that the cheneau braces being made in the katharina schroth clinic (of which he is medical director) are not as good as those made by other orthotists in germany

    just to show how confusing it all can be

    by the way (to HIMOM) what where the curves before correction? 5 degree now sounds fantastic!

    gerbo

  4. #19
    Join Date
    Dec 2004
    Posts
    236

    Dr. Weiss

    "very difficult to judge how authoritive this dr weiss is. I think spinecor backers would say he didn't use it properly for it to help, as they emphasise need for proper training before using it"

    Gerbo, you are correct; I'd spoken to a doctor involved in the study, and yes Dr. Weiss, by no means, had the correct training to use the SpineCor Brace. There's a new study, to be published soon, showing very promising results. It's pretty comprehensive; 365 kids, with some followed up 5 years later, and still maintaining/holding their correction. Pat

  5. #20
    Join Date
    May 2005
    Posts
    776
    There's a new study, to be published soon, showing very promising results. It's pretty comprehensive; 365 kids, with some followed up 5 years later, and still maintaining/holding their correction.

    How do you know about this, when and where is it coming out? Any further details?

    gerbo

  6. #21
    Join Date
    Dec 2004
    Posts
    236
    Gerbo, we were up in Montreal last month, spent a considerable amount of time w/Dr. Rivard learning about the SpineCor Brace. We head up again next month, to get the Brace; the study was mailed down to us after we left Montreal. We'll learn more next month, i.e. publication date and where published. Pat

  7. #22
    Join Date
    Sep 2006
    Posts
    7
    Back again- Mr Mills from Spinecor sent me another Dr's name- in Ga. Dr Brian Ouellette. Anyone heard of him??? Supposedly has 13 yr experience with spincor. Have an appt this Sat. Hopefully the Spinecor will help in some way. Just unable to justify a trip to Canada at this time- Ins is not going to pay anything!

    Hard bracing has not helped for the past 4 yrs. So next visit is adult surgeon. We see him in Nov. Curve is about 30'.

    What do I need to make sure I get when I leave my appt? I have heard parents talk of exercises, body suits. I don't want to leave without having full knowledge and then drive 9 hours to find I missed something. Also what to expect. I know about the computer program, fitting.... anything else I need to make sure they do?

    The Dr has been most accommadating via email.

    Neva

  8. #23
    Join Date
    May 2005
    Posts
    776
    If Andrew Mills recommended this person (who I assume is a chiropracter and not a (medical ) doctor) one has to assume he knows what he is doing.

    Before our initial appointment with mr mills, one year ago, we were told to leave our daughter out of her hard brace from 3 days prior to appoinment onwards

    The offiial protocol (which I amsure you can find somewhere on the spinecor website) requires quite a few xrays on initial assesment. however in our case we had two (which to me must be the minimal); standing out of brace and standing in brace. The cobb angles measured at that initial appointment should give a reasonable indication of the spinecor potential in your childs case.

    X ray needs to be PA (from back to front) with protection provided to pelvic organs (obviously to be attached to the back to stop radiation getting through, and not, as one radiagrapher did to our daughter, to the front)

    Do remember, that as your child is already a bit older, and has worn a hardbrace for years (which could well have stiffened up her spine) there might not be an awful large correction.

    re computerprogramme; this is only an aide-memoire for the fitter, as different curves need different configurations of straps, if yours is a "common" curve, he might not need computer to remember


    re exercises; there is no published evidence of any exercises having an additional benefit. The company argues that any movement whilst in brace is relevant exercise in its own right. There are spinecor specific exercises, apparantly developped in Europe, I am still trying to find out how relevant they are (i do not think they are used in canada or in the UK and USA)

    re bodysuits; lots been written about that on other spinecor threats

    Hope this is of some help

  9. #24
    Join Date
    Sep 2006
    Posts
    7
    Thanks-

    So you have opted to not go with Spinecor at this time? It is alot of decisions to make and hope that they are the right ones.

    Neva

  10. #25
    Join Date
    May 2005
    Posts
    776
    So you have opted to not go with Spinecor at this time
    nono, lisanna has been in the spinecor since january

  11. #26
    Join Date
    Sep 2006
    Posts
    11

    3 juvenile girls to eerie, pa

    We have a scheduled appt. for Eerie next month to see if 2 of our daughters 5,& 6 qualify for the use of spinecor. We can't image our girls being in hard braces for approx. 10 years. Our 5 yr old is being fitted for a hard brace tommorrow because of the waiting time to have an appt. in Eerie. Her curves are 39 thoracic and 33 lumbar. Our 6 yr old is getting a shoe lift today approx 3/8 of an inch and we will see if that helps her curve 11 thoracic and 23 lumbar. We also have a 3 yr old with a 10/10 curve and she also may have a leg length discrepency which is being checked today. We just want to thank everyone on this site for sharing their information. It has really helped us. We will let you know how our trip to see Dr. Sanders goes.

  12. #27
    Join Date
    Jan 2006
    Posts
    513
    How did they check for leg length discrepancy? I have another friend, and the ortho thought that might be a problem for her child, but did nothing to check for it.
    The physical therapist looked at the child on the table, and said she thought it was leg length. I did not think that it could be determined without a special x-ray, but that is only because of an earlier post on this forum. Thanks!
    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.

  13. #28
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    hi "jaymes10",

    i wanted to post a reply to your message since i might have some relevant information. first a question -- have you spoken directly to dr. sanders or his care coordinator about getting your daughters fitted with the spinecor? or have you just made an appointment for their scoliosis -- meaning a more general appt?

    the reason that i ask -- my son lucas who is almost 5 yrs old (in november) had gone through serial plaster casting in erie with dr. sanders from 2 1/2 yrs to 4 1/2 yrs old. he started at a 68o/45o curve at 18 mos and had improved initially with bracing here at children's boston, but then worsened. that is the reason why we decided to travel to erie since dr. sanders was the closest ortho doing casting at that time. this past june, lucas was taken out of his last cast and placed into a tlso fashioned in erie. i had asked about a spinecor for lucas multiple times, but dr. sanders had e-mailed and said more than once that the youngest patient he had fitted successfully was 7-8 yrs old.

    my husband and i decided to go to montreal to see drs. rivard and coillard, the inventors of the spinecor, to see if lucas would even be a candidate. he was fitted in july and we came back a month later to make sure things looked good. currently he is 18o/14o in the spinecor. i have relayed this information back to dr. sanders because the last thing i wanted to do was burn any bridges. plus, we are indebted to dr. sanders and the team in erie for enabling us to have these non-surgical options to choose from.

    anyway, i apologize for my long story, but i wanted to make sure that you don't make the long trip without making sure that dr. sanders is trully willing to try and fit your 5 yr old. actually, lucas is currently the smallest child drs. rivard and coillard have fit. i'm glad that we went to them because of that very reason. i have a personal website that i can e-mail you privately if you would like to take a look at lucas' x-rays, braces, casts and now spinecor.

    my best,
    deshea
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

  14. #29
    Join Date
    Sep 2006
    Posts
    11

    spinecor and eerie trip (desheah & cheryl p)

    we talked with Mary Jane and she talked with Dr. Sanders. He knows thats our intentions for coming to eerie. He did not return our e-mail when we sent one to him. Our 5 yr old was casted last week for her tlso brace. we opted to get that for the time being just in case he tells us no. Our 6 yr old Cheryl was diagnosed with a leg length discrepency through x-ray then followed up by our orthotist who used a special kind of level he used on her hips simultaneously with putting pads under her short leg till she was balanced. She was approx 3/8 of an inch off on her right leg. Her lift was put on the outside of her shoe (somewhat noticeable) because of the difference. If it had been less then it could be done from inside the shoe.

  15. #30
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    hi again,

    i'm very pleased that dr. sanders knows of your intentions. also, i am hopeful that he would be more willing to put younger children in spinecor braces now that he knows lucas and other young ones (5 and 6 yr olds) are able to be fitted. i wish you a very good visit! lucas still talks of erie as if it were disney world. he was treated like a prince there.

    deshea
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

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