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rtremb
09-24-2007, 11:07 PM
I found some posts on here about the Cheneau brace. I am wondering if anyone has had success with this brace with larger curves when combined with a good physiotherapy program? We are hoping our daughter can get the Spinecor brace but if she can't we need a back up bracing plan and the Cheneau brace - even the program in Germany or the U.S. looks like another option. It would be good to hear if someone had success with this brace with curves in the 50 degree range.

gerbo
09-25-2007, 03:25 AM
http://www.skoliose-info-forum.de/index.php

this is a german forum, but there is a section for english speaking people.

thry argue very hard for the quality of braces of 2 specific orthotists, and results of initial correction seem very good, though there is little in the way of final outcomes. also, the message you get is that it is not easy, and for a good correction you will have to suffer!

rtremb
09-25-2007, 12:02 PM
Gerbo:
Oh goodie - my daughter loves to suffer!!! - just kidding. She wasn't too good at wearing the two night braces.
Thanks for the link I will check out the forum.

~ScoliosisGirl~
09-29-2007, 12:41 AM
Let me know if u have any questions.
I wear the cheneau brace and its is very good..
doesnt disable me at all! im able to do everything!
Btw. i went to dr. rigo in barcelona to make by brace&&
i will be going there next month! hoping for good news!

rtremb
09-29-2007, 12:48 AM
Hi Rotem:
I am glad to hear you are able to wear your brace without any difficulties and still do everything. Hope you have a good appointment next month and your curves are the same or lower.
Do you know if your brace is a traditional Cheneau brace or the Cheneau light version?

~ScoliosisGirl~
09-29-2007, 12:56 AM
thanks! im not 100% sure.. all i know that it is a cheneau brace! =]]

~ScoliosisGirl~
09-29-2007, 12:58 AM
go to my site and read my full story on my cheneau brace and dr. rigo in barcelona!

Sophiezp
10-07-2007, 12:04 AM
Hi everybody I am the new kid on the block! :o :) :D

My name is Sophie, I am NEARLY 12 years old (my birthday is on Columbus Day, 10/8 [!!!!!!!!!!!]), and I live in Westchester/NYC. I am Chinese, about 100 lbs, and 5'6.5" (which is HUGE for my age, people think I am 16 or something) :p
I play a lot of sports, includin tennis and swimming. I have been swimming since 3 years old because I had asthma and swimming completely obliterated it from my life. :D
I was diagnosed with scoliosis on July of this year with a T45 curve and a L30 curve. The doctor referred us to a scoliosis surgeon and he recommended surgery. My family and I, however, decided to wait and see what would happen. In August we got another x-ray and this time my curves were T54 and L35. I was really scared and worried because our surgeon pressed me to have scoliosis ASAP in late September 07.
My mother spent countless sleepless nights searching the web, looking for an alternative treatment(s). Soon she found a man named Dr. Manuel Rigo in Barcelona, Spain. He teaches the Schroth method of physical therapy.
This year I started at a new private school in NYC so we could not go to Barcelona, but my mother e-mailed Dr. Rigo and the kind soul e-mailed her back during his vacation! What a nice person, I would love to meet him someday. He referred us to three people he taught who are currently in the US: Luke Stikeleather in Fairfax, VA, who makes Cheneau braces and Beth Janssen and Patricia Orthwein in Stevens Point, WI, who teach the Schroth method of physical therapy.
Luke made a Cheneau brace for me in August and so far everything is going well.
Just last week my mother and I went to Wisconsin to see them. They are a truly wonderful pair along with their co-workers Jan and Julyane. It is a great alternative to going to Barcelona if you can'y go to Spain. They even booked us a great hotel five minutes from their clinic, Scoliosis Rehab. Find out more at scoliosisrehab.org
Well, I am back in NY now but I still don't want surgery. If there is anything anybody knows please write on this forum or contact me:

E-mail: sophiezp@yahoo.com
AIM (but I am rarely on): sophiezp888

Thank you so much guys! :D :D :D

rtremb
10-07-2007, 03:09 AM
Hi Sophie:
Welcome to the forum. I am new to the forum too. I have learned so much from this website in the past few weeks.
My daughter's curves are about the same size as yours. We are interested in learning about the Schroth scoliosis treatments so please keep us posted on your progress. Did you get a brace yet? Have you started the physical therapy yet?
For the past few weeks my daughter has been doing the Pettibon exercises everyday and seeing her chiropractor three times a week, and we are thinking about getting a Spinecor brace.
Ruth

clarexp
10-29-2007, 09:23 PM
Sorry for getting back to you earlier. Sophie is my daughter. She has very tight daily schedule and does not come on to the forum regularly.

She has been wearing Cheneau brace since mid July and her correction is 39T/31L (one month in brace) compared to 54T/39L. The result is just OK. I was told that there are 2 Cheneau brace makers in US. If you can afford, better get a good brace done in Europe, as we just can not afford to loose the time. I did not know then.

We went to WI to learn Schroth as I think that today most people do some kind of exercises anyway. Then Schroth can be the one for her. I aslo read an article somewhere, saying that exercises works better for the poeple who did not exercise much. I have the feeling that may be true.

She will take out brace x ray in mid December to see her true curve. If it works for her, I will get a good brace from Europe.

I just contacted a molecular biologist – Alain Moreau, at St Justine Hospital in Montreal. His lab has several blood tests that can identify scoliosis levels and condition, and are under clinical trial. I will take my daughter to take a test which is used to predict the efficacy of brace treatment. It is may not be something 100% you should rely on, but I want to be better prepared. Dr. Moreau is very kind and quick in responding emails. He can be contacted at alain.moreau@recherche-ste-justine.qc.ca.

I think it is very good that we can share our experience with each other. We are all exhausted especially psychologically as there are very few reliable information resources out there. I was recommended to a professional by another professional on this forum for a comprehensive evaluation. We went and were very disappointed. He was unable to answer any specific question in terms of brace type, treatment options etc. I was told that he only started seeing scoliosis patients in the past a year or so and had seen about 7 or 8 patients, some got better some got worse. I am not happy with the person who made the recommendation. Lucky it was $200 not $3000.

I do not believe any chiro or exercises can make change to the curve permanently to most scoliosis cases (although it did happen to a very few lucky people). If it does in the short term, it is obvious to me that it will take the same amount of work to maintain the result. However I can not convince myself to send my daughter to surgery without proof that these methods do not work for her.

We have visited several surgeons and one of them insisted having surgery within 3 months time who also denied any post-op complications. The others are less pushing as they think 50/60/70 degrees curve does not make huge difference in surgical result. They also do not believe it is necessary to correct to or close to 100%.

The reason I do not like the surgery is not the 10% of complication rate in the short term, it is also in the long term. In 20 years time, the kids in teens now will only in 30s and may need 2nd surgery. It is unthinkable. I hope my daughter can hold as long as she can. I also hope there will be better treatment options available in the future.

Since my daughter was diagnosed with scoliosis, I have discovered some people with severe (50 degree plus), without surgical treatment, live well toady in their 50s, and healthy, no back pain. Being alive is one thing, having a life is another.



Hi Sophie:
Welcome to the forum. I am new to the forum too. I have learned so much from this website in the past few weeks.
My daughter's curves are about the same size as yours. We are interested in learning about the Schroth scoliosis treatments so please keep us posted on your progress. Did you get a brace yet? Have you started the physical therapy yet?
For the past few weeks my daughter has been doing the Pettibon exercises everyday and seeing her chiropractor three times a week, and we are thinking about getting a Spinecor brace.
Ruth

jillw
10-30-2007, 09:46 AM
Clare, well said-I share many of your thoughts! I had read somewhere about the clinical blood tests by the doctor in St. Justine. Did he say what the requirements are to be included in the trial? (i.e. a curve of a certain size or a certain minimum age?)

Thanks! Jill

MATJESNIC
10-30-2007, 12:19 PM
If you read all of my old posts over the past two years, you will see that I am a Mom who wanted to do anything to avoid surgery for her daughter. But once her curves were in the 50's and Dr. Rivard, Dr. Coillard (never in a rush for kids to have surgery) and two surgeons in Phila all agreed that Nicole had to get surgery, I had to do what was right by her. I have read too many posts from the women in their 20's, 30's, 40's and up who are now facing surgery for the first time when they should have had surgery long ago. There are some advantages to doing it now including the fact that kids recover and heal much quicker than adults. Nicole has been off major pain meds since 10 days post-op and was back at school full-time before 6 weeks. She had two loving Parents to take care of her and did not have babies she couldn't lift, a job she couldn't go to, or any of the adult responsibilities that come later in life. Many of the adults who have this done are on pain meds for a long time and healing very slowly.

Nicole's curves were getting worse with each passing week. Worse yet, her rotation was getting worse. Her curves were also getting stiffer as the months passed.

If you ask anyone who knows me, our mantra for the past two years was "Nobody is touching my daughter. She will not get surgery."

But there came a time where there was no choice and we had to do what we didn't want to do.

I hope you are able to avoid surgery for your children. But if there comes a point where everyone is in agreement that it is the only option, it really does seem better to do it now before the curves get really rotated and stiff and before the kids have huge responsibilities.

clarexp
10-30-2007, 01:10 PM
Jill,

It is in clinical trial therefore it is free. They have 3 different types of tests. It is the best if you can write to him and give him the history of your child, he will tell you which test to take.

He is not a MD. You go straight to his lab. He has a lady arranging appointment for him and you can request to see him have a little chat. I think his work is very interesting and extremely important and will benefit many many people in the years to come if they are proven successful. He mentioned that the tests are expecting to be available commercially at the end of 2008.

Clare





Clare, well said-I share many of your thoughts! I had read somewhere about the clinical blood tests by the doctor in St. Justine. Did he say what the requirements are to be included in the trial? (i.e. a curve of a certain size or a certain minimum age?)

Thanks! Jill

clarexp
10-30-2007, 01:41 PM
I agree with you, Melissa. Thanks for the advise. We are also seeing some surgeons in/near our area.

There is one thing I am not very sure about. Is it definitely better to do the surgery now or 5/10 years later, as in 10 years time, there could be something new or different way of surgery. Looking back 10 years, the implication rate was higher.

Our daughter is involved in making all these decisions. She reads some of the medical papers I found and we discuss.

What also puzzles me is, some people can live well with scoliosis. The people that I mentioned in my earlier post are true. A wife of my husband's colleague, from Spain originally, in her 50s, swims everyday; a relative of my close friend, a man in 80s, goes ski every year, (he has visible hump on his back so I would say at least 70 degrees); the brother of a mother in my daughter's school, in his 50s, active in all sorts of sports.

It is hard to ignore their existence. I can only hope that my daughter can be that lucky. But I do prepare for the worst - having surgery June 2008, so she can have enough time to recover.

I read some of your posts as well as others. You are the ones inspiring me to try and flight, before accepting the surgery. My best regards to you and your family.


[QUOTE=MATJESNIC]If you read all of my old posts over the past two years, you will see that I am a Mom who wanted to do anything to avoid surgery for her daughter.

MATJESNIC
10-30-2007, 02:16 PM
I think a lot depends on the risser. My daughter's risser was a 0, so the main goal of surgery was to stop the curves from progressing. Straightening out her back is the bonus. I always think about what great thing may come along in the future that would have been better for Nicole. In some ways, our situation was easier than for others. We had no choice. We would not have been responsible Parents if we would have not listened to all the doctors who said these curves must be stopped. Her health would have been eventually jeopardized. Believe me, I still worry about her. But we had no choice.

gerbo
10-30-2007, 02:34 PM
how is she doing? (and you)?

clarexp
10-30-2007, 04:08 PM
Structural,

I believe your good intention in recommending Dr. X, “he is very well recognized and very level headed about choosing the appropriate treatments at the appropriate times.” (your words). I interpreted that as comprehensive evaluation, maybe I should have added “of non-surgical treatment options” to make it clearer.

I checked out the web sites you provided and expected that we could get overview of available treatment options and to hear HIS OWN experiences in scoliosis treatment.

The question I asked are just as you suggest,
what treatment options available out there, what they have achieved, any example of success
Answer - Uhhhh;
how many different types of brace, which one has better success rate.
Answer - they are all pretty much the same.
He did not give any advice on my daughter’s treatment options after he examined her.
He did give my daughter SI massage (sorry I do not know what else to call) for about 20mins.

He told me his own experience with scoliosis patients is in the past a year or 2, 7 or 8 people. “some got better and some got worse” was all he said. No information given on patients’ age group or length of the history…

He also said that he was a speaker in SOSORT conference, his job was to help others to make a plan on how to evaluate their work.

I am sorry to say that I can not hold my feeling of disappointment to the visit to Dr.X. I truly do not understand, if he is who you said he is, why he did not give us his opinions and share some experience? I am even more disappointed than I was.

We have seen several non-surgical treatment doctors (I do not mean MD) and spoke with several. Some of them have sons/daughters had scoliosis and that was why/how they incorporated scoliosis treatment into their practice. And I met of the sons who had scoliosis. I tend to believe them more as they are genuine and try hard to be helpful.

We know very well nothing works for everyone. Even the same method, if it is applied by different doctor, the outcome can be very different. I am not afraid to hear disappointing word as long as its true, as most of these practitioners have only small rate of success. I know what I need to ask and how to listen between the lines.

When it comes to cost, Structural, please do not assume the things that you are obviously have no idea of. The blood work in Montreal is FREE; the PT provide Schroth training is covered by insurance, and they also have special rates on hotels and car rental.

P.S. Structural, you were not there at the visit, so please do not “think” what he would/should say based on what you know him. I hope you were there. We would not have to waste time on this discussion, and involve other people too which I think is not fair.


[QUOTE=structural75]

I'll gladly disclose that it was me that refered you that M.D.. I have some issues with your lack of gratitude here... I didn't send you to him for a "comprehensive evaluation"... I referred you to him because you were interested in exploring a non-surgical/conservative adjunctive approach in combination with bracing.

emma12
10-30-2007, 04:33 PM
Melissa,

Just today, I was going back through some of the spinecor posts, and didn't realize before that Nicole had worn the spinecor brace. That was one option we didn't try before my daughter's curves totally got out of control. I agree with everything you are saying here. Facing surgery is definitely not what we wanted to do, either, however, when we got to the point where every doctor was telling us that if we continued to do what we were doing that they believed our daughter was going to end up severely deformed in several years, we realized that we must go for the surgery. We were told with curves in the 50's and 60's, and risser of 0, the best guess of every doctor we saw was for continuing rapidly increasing curves. You wouldn't be responsible parents to sit back and watch your child become increasingly deformed, and begin to have real health compromises just to avoid fusion now, waiting for when something is developed later.

My daughter also recovered wonderfully from the surgery, and while I felt the world was falling apart, I knew that was the only choice to make. We couldn't wait any longer, there was not really any choice. In 3 months time, her compensating curve was becoming fixed and rigid - that was the real deciding factor for us.

I am sure there will be some better form of surgery in the future, some of the new fusionless surgeries look interesting to me. I do worry about the future for her, but we'll just have to take it as it comes.

Noone can tell you how bad your child's scoliosis is likely to become in the future if it just continues to progress. Reading the adult surgical postings on this forum and the ordeals that they faced with their surgery certainly seems like these kids have a much easier time with this surgery than the adults do.

rtremb
10-30-2007, 05:11 PM
Melissa:
I agree that there is a point when the surgery is necessary and best for the child - we just haven't reached that point yet I guess. Just the thought of Esme having this operation is unbearable to us which is why we are wanting to try everything we can to stop progression.
Your surgery story is an inspiration and I love hearing how Nicole is doing. The posts I read here about the children going through the surgery will help us immensely if we ever have to have the surgery done.

MATJESNIC
10-30-2007, 07:26 PM
Ruth,

Believe me, I understand. None of our options are what we want for our kids. None of us ever thought we would be in this situation. We were just going along living our lives and .............Bam!!!! We are thrown into this world of scoliosis. I just hope that when Nicole is one-year post-op that I can stop coming on here and really continue with my life. I still need to come on here. But I hope I don't always need to do that.

I can never regret having the surgery for her. But I will always hate that she had to go through it and has to live her life with a fused back. My little dancer girl. It is so hard sometimes.

flowerpower
10-30-2007, 08:32 PM
Very well said, Melissa-

Renee

structural75
10-30-2007, 09:26 PM
Clare,


I believe your good intention in recommending Dr. X, “he is very well recognized and very level headed about choosing the appropriate treatments at the appropriate times.” (your words). I interpreted that as comprehensive evaluation, maybe I should have added “of non-surgical treatment options” to make it clearer.Yes, I did, and still do have good intentions... I'm very sorry it wasn't what you were expecting. My intention was to refer you for a consult with an M.D. in Physical Medicine and SI practitioner who may be able to offer an evaluation and adjunctive treatment (S.I.)... I didn't realize that you were just looking for a verbal consultation on all methods of potential treatment. And I would gather that the Dr. didn't expect to have all of the numbers from various methods at his fingertips to review with you. I'm certain he was expecting to see your daughter as an SI patient rather than talk about theoretical options.

My comment about appropriate treatments at the appropriate time was in reference to his willing to try more conservative methods before opting for something more invasive.

I still believe his answers were legitimate given the situation.

He told me his own experience with scoliosis patients is in the past a year or 2, 7 or 8 people. “some got better and some got worse” was all he said. No information given on patients’ age group or length of the history…This is the same conclusion in layman terms that can be drawn from every study on every method out there right now.... some improve, some don't. If numbers are what you're after then you can easily obtain those by reviewing the numerous studies... I don't think the Dr. saw it necessary to dig that info up seeing as you went to him for a proposed SI treatment. And we all know that age groups/history will still show dramatically different results within the same brackets. The fact that he didn't 'promise' you anything or try to 'sell' you on his approach says a tremendous amount about this person. That is the major complaint I hear on this forum about "alternative" treatments... That the practitioners are providing "false hope" and making unsubstantiated claims. I think it says a lot that he was perfectly blunt and honest with you without being speculative about it for his own personal gain. (Which he doesn't need... after all, the late Christopher Reeves, a.k.a. - superman) sought him out for treatment with somewhat incredible results... this Dr. is not the person you make him out to be.)

I guess what I'm getting at is that you asked me my thoughts on non-surgical approaches and you seemed determined to try conservative approaches before opting for surgical intervention... So I referred you to a Dr. who could offer you a non-surgical approach, thinking that you'd be in very good hands as far as SI practitioners go because and he was also a notable M.D. in his field who wouldn't be pushing for surgery right off the bat. He might of even been interested in documenting your daughter's case as a formal case study, regardless of the outcome. Efforts like that would only make these decisions more clear to us in the future.

That seems to be the source of this misunderstanding... I apologize for the loss of your time and money, but it also would have been quite possible for you to give that approach a try and see what began to come of it. You probably could have had about 8 - 10 treatments by now which is enough to give you a clear picture of whether it was effective or not.???


how many different types of brace, which one has better success rate.
Answer - they are all pretty much the same.
He did not give any advice on my daughter’s treatment options after he examined her. Braces are pretty much all the same, with variations on the technical build of them, soft vs. rigid, etc. ... Yes, they have varying success rates... but again, some find one brace extremely helpful/effective and others find the same brace completely useless/ineffective. They all work on the same premise of forcing the spine straighter or at least trying to forcibly hold the curve. That sounds like "pretty much the same" to me. Does it not? I think some are more appropriate in certain situations and that's something you should talk to your scoliosis orthopod with. Otherwise being more descript as you would have liked would be splitting hairs on the same head.

You seem to be an informed parent, so I don't think it's up to the Dr. to tell you what the treatment options are in this case... He was probably assuming you came to him for an SI approach to addressing the curve. He obviously doesn't advertise himself as a primary physician for assessing scoliotic curvature treatment options. That's not to say that he isn't capable or qualified to work with scoliosis... he probably understands human structure better than most Doctors in the realm of scoliosis. This is not a disease, but an aberration of physical growth and development that takes place in such a way that we label it as scoliosis... there are many, many variations on the theme that we don't have labels for, but they're dysfunctional and potentially troublesome deformities nonetheless.

In the end, I apparently misunderstood your intentions. I sincerely apologize for that. If you weren't willing to consider SI I wouldn't have referred you to him.
regards,
structural