Don't condemn bracing!

[Hanti]

Dear doctors of the forum, I only registered here to be able to see some attached photos, but I'm about to leave the forum again already...

I live in Germany, and my daughter (almost 14) is wearing a Cheneau brace, her curves were 25 and 26° Cobb. In brace the curves had an initial correction to 10 and 18°, she also developed a high thoracic curve of 19°. After approx. one year the xray showed 16, 18, and 20°, while she was out of the brace 16 hours prior to the xray.

She will be wearing the brace until her bones are mature, between 18 and 21 years of age. At the same time she is doing Schroth exercises, which she has learnt in Bad Sobernheim, Asklepios Katharina Schroth Klinik (Dr. Weiss used to be the director until the end of 2008)

And she is not alone! I know of a lot of scoliosis patients, who had braces and are now adults without a fused spine.

I know she will have to take care of her spine more then others and will probably have to keep on doing exercises as an adult, but without a brace, I've seen a lot of curves worsen dramatically!

If your CLEAR-method is working for some of your patients, good! But good braces are working for a lot of people all over the world, also!

I thought this was a neutral forum, but I see now it's more or less part of the CLEAR institute...

This is the homepage of our bracemaker, he is very successful in treating scoliosis and wellknown throughout Germany and surrounding countries:
http://www.rahmouni.de

Bye, Hanti

[Dr Kalla]

Hi Hanti

Thanks you for your input and I am happy that your daughters scoliosis is getting better.

This is a neutral non-surgical scoliosis forum.
When I started it I took contact with therapist using different methods of treating scoliosis but unfortunately non of them are making any post here and therefore the forum is mainly represented by CLEAR therapists. I would hope that other treatment forms where better represented, but it may take some time.

I think that why hard bracing is getting rather negative comments around here is that none of us prescribe them and there is more and more research papers showing their lack of inefficiency.

Please do not feel intimidated to defend nor share your positive experiences with hard bracing with other members of the forum.

regards
drkalla

[DrStitzel]

Hello Hanti,

CLEAR is over represented in this forum simply, because others have not been posting or sharing valuable info and experiences like yours. We should all encourage non-CLEAR affiliated forum users to bring some much needed balance to the forum.....which I openly welcome. I hope you don't decided to bail out of the forum just, because others are providing opinions, ideas, and facts that contradict your current thoughts on the subject......I mean, how could any of us learn anything without challenging the status quo or our current belief systems from time to time.

Personally, I am looking, searching, and working towards a better way. I do not believe the future of scoliosis treatment lies in forced correction methodology. The threshold for scoliosis treatment "working" is so low that parents and patients have accepted a "good enough" mentality. The Cheneau brace may be more effective at stopping curve progression than others, but in reality, like all bracing/forced correction treatments, it makes no effort to reverse the condition.

Again, I'm thrilled you daughter is doing well, but let's consider this for a moment. She probably developed the 3rd cobb angle as a result of compensation for the brace forcing the other cobb angles out of her spine without first creating space in the side or vertical dimensions. I don't think that could be defined a successful. Plus let’s look at the total amount of global distortion in her spine in regards to the pre bracing and post bracing treatment.....she had 51 degrees of total cobb angle displacement initially (25+26=51) degrees)......her out-of-brace total global distortion in her spine is 54 degrees (16+18+20=54). Granted the measurement error on cobb angles are at least +/- 5 degrees, but I think you can see my point. It seems the brace has just pushed the curvature around and spread it out over a larger area.

Please don't interpret this as me attacking you, your daughter, Schroth, or Dr. Weiss (whom I am a big supporter of), but when are we going to demand a change in thought, direction, and treatment. Why is only halting progression "good enough?" Where are the attempts to prevent and reverse the condition?

I apologize if my frustration gets the best of me sometimes, but I have a much different vantage point that provides me with a much different picture of scoliosis treatment the future. Here's a hint, it doesn't include forced correction.

[drmark2star]

Hanti,

Not every doctor on this site is a CLEAR doctor. We are all, however, searching for non-surgical means of scoliosis management. Don't let Dr. Stitzel's brash enthusiasm turn you away. It is only well-meaning enthusiasm. We are looking for individuals just like you to tell the world about the success of your daughter's treatment. The more people like you share their stories, the more it gives others hope that their sons and daughters don't necessarily have to go under the knife.

What many individuals don't understand (Dr. Stitzel included) is that scoliosis braces made in the US are far inferior to their European equivalents. Therefore, it is easy for US trained physicians to throw aside bracing as a useless adjunct. Even US orthotists are not familiar with Cheneau, Rigo, Scoli-o-logic, and other European bracing concepts.

Please invite your orthotist to become a member of this forum, along with any other parents you may have met in your daughters treatment program. Ask them to share their stories so that children in America might have a different fate than surgery.

Thank you again for your post.

[DrStitzel]

True story Dr. Morningstar. We are really all on the same team here....honestly.

I can certainly get on board with almost any form of bracing if it prevents the patient from surgical intervention, however, as we discussed previously, there is quality research (whether anyone wants to accept it or not) to suggest that forced correction doesn't decrease the number of cases going to surgery as compared to observation only cases. AND.....I think the bracing methodology thought process is detrimental, because it only addresses the cobb angles, not the entire spine, or the obvious neurological components that are probably the initiating cause of the condition.

Shouldn't we be working towards a treatment system that can reverse engineer the problem, so the condition can be reversed instead of just attempting to artificially "hold it in place" and hope for the best? Maybe I'm just being ambitious, but I haven't given up on looking for a cure, not just the most effective way to dodge surgery (which as I discussed earlier, does have some significant merit).

I do not think it is reasonable or conceivable that the passive treatment of forced correction will have a significant impact on the natural course of the scoliosis condition, which is a condition that involves MUCH more than the spinal column and cobb angle measurements. Bracing only attempts to "treat" the symptom(s) (the cobb angles) and not the cause. So a patient can do all the exercises they want while in a brace and it will most likely have little to no impact on the condition itself.....This is a neurological problem that is causing a mis-coordination of the muscles in response to gravity (dumb muscles), NOT a weak muscle problem. The neuro-muscular re-education process MUST be initiated by the brain, not just feedback from the spine that has been temporarily artificially corrected.

I'm not trying to disparage the attempts of others to help these patients, but I think the search for a "better brace" needs to be kept in the context of a "space filler" while we continue to search for a better way. I feel the future of scoliosis treatment lies in the way of NMR (neuro-muscular re-education) and not forced correction.

[Hanti]

Thank you for answering, I understand now that you are really taking a lot of effort in the treatment of scoliosis (not mainly in making money, what I thought first...*smile*).

I sure hope I will always be able to tell a a positive story of my daughter's scoliosis. She is reaching puberty and is getting more aware of other things in life.

Dr. Stitzel, your way of adding the degree numbers I've never heard before..., still I'd rather prefer three small curves instead of one big one.
If your method (CLEAR) becomes available in Germany, I will definitely give it a try (if it's affordable).


Believe me, I've done a lot of research before I had the brace made for my daughter, and it's not only keeping the curves from progressing, it's correcting them, and it's derotating the spine also.
We see the bracemaker about every 2 months, he renews the "Pelotten" (pressure pads?) almost every time. The whole brace is made new approx. every 8 months, depending on my daughters growth and "body changes".

I'm a member of the german scoliosis forum "Skoliose-Info-Forum" where they have an english-speaking section, also. You are welcome to visit us!

Everybody does what they think is best, reachable and affordable for them, but we are always on the lookout for something better!

I wish a peaceful christmas time,
Hanti

[DrStitzel]

Hello Hanti my friend,

I can completely understand your concern in regards to scams and rubbish (to use Goldfinch's word). There is no shortage of them out there and one must always be on guard against such a thing. Unfortunately, that means opportunities many be dis-regarded from time to time as well, so be on the look out to sort through which is which.

I have an "all out, all the time" type personality and it can put people off initially, but I gotta be me. I have dedicated my professional (and much of my personal) life to working with scoliosis patients and developing a better way. While I do receive compensation for my time and efforts, I have to tell you that I could be working half as hard and making more money by just shuffling through a ton of lower back pain and headaches cases, but I chose to work with an "incurable" spinal condition, because I refuse to accept the status quo.

We need innovators, system challengers, experimentalists, and failures in order to over-come this condition once and for all......Guys (and gals) like me are a necessary part in order to help move us another inch closer to a cure. I am often mis-understood, and even sometimes wrong, but I'm never giving up.


This post ran a little long, so anyone who would rather watch the 10 min. video on the topic, than read this is entire post is welcome to view it at their convenience by clicking on this link: The video is on the bottom right hand side labeled "Scoliosis Treatment Consultation"

http://www.treatingscoliosis.com/non...scoliosis.html

Anyway, in regards to adding the Cobb angles to create a "total" spinal distortion concept.......well, that isn't the most scientific way of doing this, but it gets my point across. Here is a more accurate concept to think about. The spine should be straight when looking at a person from the front or back. The Cobb angles are just a measure of how much the spine is curved from a straight line. Now the spine has 24 moveable individual segments, but they don't move individually (you can't wiggle one vertebra right?). The vertebra move together in a groups or functional units which are determined by muscle attachments (the muscle attachments are pretty much the same in everyone....even scoliosis patients). These groups inter-act with each other in a lever arm fashion that laterally bends and rotations in order to create torque. The torque the spine produces drives the pelvis and shoulder girdles and that is what propels forward locomotion (that is why your legs and arms always move at the same speed while your running or walking......because they are both being driven by the same "spinal engine").

Now the cobb angle is a gross measurement of the how much the spine is curved in comparison with a straight spine, but the Cobb angle its self can be further sub-divided into smaller angles according to the aforementioned functional units. Basically, measuring the entire spinal curvature is like eating an elephant all in one bite, and breaking it down into is functional units is like eating the same elephant in bite sized pieces.....which is much more manageable. There are several major advantages to this approach.

Advantage #1: It allows us to understand the composition of the curve, not just the size. Let's say a 40 degree Cobb angle includes 3 functional units (A,B,& C). Functional unit A may be crooked in relation to straight by 5 degrees, functional unit B may be "off" by an additional 5 degrees, and functional unit C may be "off" by 30 degree (in total they equal a 40 degree cobb angle). Common sense tells you that the treatment plan should focus on reducing functional unit C (which is off by 30 degrees, rather than units A & B, which are each off only 5 degrees). Cobb angle doesn't give you that kind of detailed information and like my grandfather used to say, "take care of the little things and the big things take care of them self".......he would be proud I worked that into a conversation.

Advantage #2: Measuring the individual functional units reduces measurement error. The projection distortion can be dramatically reduced using sectional radiography rather than a standing full spine film.

Advantage #3: It provides us with a completely new perspective in regards to the role of head position, hip rotation, and side view spinal distortion in the scoliosis condition. Cobb angles only measure the lateral bending of the spine. It doesn't take spinal rotation into account at all. It doesn't make any effort to correlate head position or hip rotation with the spinal curvature, and most importantly.....it completely ignores the 3-D relationship between the side/vertical dimensions of the spine and the front dimension.

I'm glad you have returned to the forum. I will make every effort to join the German forum you recommended sometime this week, but things are getting crazy around here with the holiday coming soon.

We need a better way. I don't have the answers yet, but I won't quit looking. Many hands make light work, so please do your best to spread the word about this forum and attract as many minds, experiences, and as much information as possible. I know each of us has a piece to this puzzel and we just need to work together in order to make it form a complete picture.

kind of like making rock soup......let me know if that needs explanation.