Cheneau Brace combined with physiotherapy

[gerbo]

how is she doing? (and you)?

[clarexp]

Reference to Dr.X

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]

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]

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]

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]

Very well said, Melissa-

Renee

[structural75]

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