spine-cor vs. Boston brace

[AngieW]

I'm interested in getting information about the spine-cor brace vs. the boston brace.

My daughter is about to turn 14yo. She has been going to orthopedists since she was 6yo and her curves have progressed very slowly. When she had her major growth spurt from 11.5yo-12yo, her curves actually improved. But at her last 6mo followup visit, her curves progressed more than they had over the several years before. Now her curves are 18 degrees (upper) and 26 degrees (lower).

The doctor is recommending a Boston brace. I would like to get information on how the Spine-Cor brace and the Boston brace compare. I know the Spine-Cor brace would be a lot more comfortable to wear, but is it as effective?

I tried looking through the thread below that ran for 99 pages, but after about 20 pages, I gave up. I never found where results were given.

No doctors in my area do the Spine-Cor brace, but the website says that there is a doctor about 4 hours away who does and I'm willing to travel there.

[MATJESNIC]

Angie,

Welcome. You didn't say where you were from. But I recommend that if you have questions about the Spinecor, you call the orthopedics in Montreal directly. They invented the brace and there are not many orthopedics in the U.S. who know enough about it to prescribe it. You didn't say whether you live in the U.S.
You can read about my daughter in my signature. We chose the Spinecor over the hard brace because we didn't want our daughter in the hard brace because of its restrictions and negative side effects.

Good luck to you. I'm sure you will get more responses.

[AngieW]

I'm in Texas.

The orthopedist that we went to sounded fairly ambivalent about the Boston brace. My daughter is already at Risser stage 3. She's already had most of her growth and is 1.5" taller than I am (but I have scoliosis as well and was told that I would be 4" taller if I had surgery).

My daughter really surprised me when she said that she definitely wanted to try a brace when the doctor suggested it. She wants to be tall. Tall isn't really going to happen (lots of short people on both sides of the family), but she is 5'3" already and the doctor said that she still has some growth left.

The amount of change over this past 6 months was just surprising. My dd has seen an orthopedist every 6 months since she was 6yo and she never progressed more than 1 or 2 degrees between visits and sometimes there wasn't any progression at all. When she had her biggest growth spurt, her curves actually corrected a bit. She grew just 1/2" over this last 6 months, but her upper curve increased 3 degrees and her lower curve increased 5 degrees.

I did go back through the 99 page thread about spinecor and found that it made a lot more sense when I viewed it in thread-mode.

Which particular doctors/locations have been recommended the most for Spine-cor? I've seen Montreal and New York mentioned and I actually have a phone number for Dr. Deutchman that I found on a Spine-cor website.

[gerbo]

shortly; all relevant scientific and practical info can be found on this site http://www.spinecorporation.com/English/index.htm

in my view; there is more evidence more the effectiveness of the boston brace if properly fitted and properly worn. However the one spinecor study shows results which are superior to the boston studies. BUT; it is only one study and it is conducted by the inventors of the brace. (who could be said to have a professional and financial interests)

Despite the above, the impression one gets from reading experiences as written down on the indeed very long thread, is that specially for smaller curves in younger people the spinecor does do what it promises to do, significant reductions seem to be the norm.

At your daughters age you do not expect an awful lot in the way of correction from any brace, but from info available i would argue that spinecor is as good as anything else (at least) and it is so much more user friendly (wearable, bearable) and ofcourse if she can cope better, she'll wear it more and she has beeter chance of succes.

Personally, if i was in the states and could afford it, would travel to montreal for initial assesment and fitting; just to be sure i had the best possible result

[MATJESNIC]

Angie,

I would put in a call to Dr. Rivard in Montreal. He is very helpful and you could probably get a lot of advice from him over the phone. You can make your decision from there.

As far as Dr. Deutchman, he is a chiropractor. So you have to decide whether you want to go to a chiro or an orthopedic. We started with a chiro as you can see from my old threads. Personally, with a risser 3 you don't have a lot of time on your side to make changes. If you are considering Spinecor, I would go with the "experts" if I were in your position. I think you would feel a lot better if you put in the call to Montreal.


Oh, Happy Valentine's Day everyone!!! We are all off today because of snow and ice.

[jgd1991]

Majestic,
I have noticed that on a few occasions you have recomended people go to Montreal and not go to Dr. Deutchman. This last post you made you wrote that he is not an expert . As I've stated before, I have two neices in the spinecor brace. They both were fitted by Dr. Deutchman and Dr. Lamantia. We chose them because they were the only full time Spinecor Doctors in the US. They not only fitted the brace but they are certified in the Spinecor exercise program and they offered neurological testing. My understanding is that they have braced as many people in three years that St. Justines has braced in over ten years, They also developed an adult program. They have published research and have two more research papers coming out. On my neices visits I have met people in wheelchairs, children and adults that no one would try to help. And I ve seen many people come out from their follow up exams excited about the reductions in their curves. So I think you are misleading many people by discrediting These doctors.

[MATJESNIC]

I am not discrediting anyone. I just stated the fact that Dr. Deutchman is a chiropractor and not a medical doctor. When I said "experts" I am referring to the fact that Dr. Rivard and Dr. Coillard invented the Spinecor brace. That makes them "experts" about their own brace, don't you think?

I do not have the power to "mislead" anyone by offering my opinion. If anyone were that stupid and naiive as to not do their own research and go with an opinion of someone with whom they have never met, well that says a lot about that person.

I know that Dr. Deutchman has a lot of experience with scoliosis and with Spinecor. If you look back at my past threads, I have said that. I also said he was probably the most knowledgable in this country. But many people are looking for an orthopedic, not a chiro.

With that being said, I also said it cost less to go to Montreal. The brace is less expensive, the appointments are less expensive, and there is no expensive neurological testing there. Of course, you have the expense of traveling to Montreal.

If you stay on these threads long enough, you will see that most of us are very grateful to out doctors and hold them in high regard.

If you want to do that for Dr. Deutchman, then stick around and give your opinion when new people go on. You can tell everyone how great your nieces are doing.

That's what this forum is about. Support for one another and our own opinions.

Melissa

[Celia Vogel]

Very well said Melissa!!! I'm just thankful it's not me who's in the hot seat right now ;) If anyone is in the least bit interested in conspiracy theories I believe JGD1991 is in cahoots with Structural.... I mean let's get real, when does an "uncle" go to clinic appointments with his "nieces" LOL!!! :D :D



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[MATJESNIC]

Just changing the subject here. Just want to let all of my "friends" on this site know that we just got back from the cardiologist (Yes, there are vet cardiologists!!) and Roxy's murmur is not serious. They want us to come back once more (What's another 500 dollars, right?) when she is fully mature. But her life expectancy and regular activity will not be affected by her murmur. Breeding may have been a problem, but we were not going to breed her. When she gets spayed, she will need to take an antibiotic. That's it.

Thanks everyone for your support. I told the vet that I honestly didn't think I could have handled one more emotional thing in my life right now. So thank God it was good news. I also met a lot of interesting people and their dogs while sitting in the waiting room for 2 hours.

[christine2]

Melissa has given many people on this forum great support. This forum is so us parents can speak freely with each other about our problems and concerns please do not cause us all to become so cautious that nobody wants to say anything in fear of retaliation!!

I chose to go to Monteal because of a # of reasons. ( Dr. D is acually closer) The biggest reason is because The Doctors there are orthopedics and are INVENTORS of Spinecor. You can not get much better care than that.

Melissa

I had to put in my 2 cents hopefully it did not put me into the "hot seat"

Christine

[MATJESNIC]

Thank you, Ladies.

We are Moms and Dads on here trying to help each other make the best decisions we can for our children with scoliosis. That is our main objective. We are not here to worry about being in some "hot seat" because someone may have been offended. If I have to, I will resort to private messaging and e-mails if I feel that I can not talk freely.


I can give anyone any recommendation that I want. I am a Mom. I am not Consumer Report for Scoliosis Doctors. I have not claimed to be. I have my own opinions and was under the impression that I could voice them.

I am here to help others and to be helped by others.

On this site we are Parents of kids with scoli or we are individuals with scoli. If someone doesn't fall into either of those categories, that person just might not understand where we are coming from.

[Celia Vogel]

AMEN!!!!

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[gerbo]

interesting.....,.

[MATJESNIC]

braceguy,

What do you mean you resigned? Resigned from what?

I agree about following up with an ortho. When we did go to see chiros for the Spinecor, we also followed up at Shriner's at the same time. I woudn't have felt comfortable otherwise.

It is pretty scary to think of people posing as other people. But of course it would make total sense. How sad.

[debigolebiwski]

Braceguy,
Serious, do you think that the SPinecor could maybe hold my curve to keep it from worsening? I'm not looking for correction at my age. It is so scarey but this jacket is so much more uncomfortable than the milwaukees were. From age 2? to about 18!

[Celia Vogel]

You may also find it interesting the the unmentioned Chiropractors sometimes enter these chat rooms under different user names to talk up the spine cor brace.I have personaly seen this done.


It's sad to say but this doesn't surprise me one bit! When these people start harassing parents of children with scoliosis that's when they're crossing the line!


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[AILEA]

It is sad and scary to think of people posting as other people. I try to be alert, because in the internet you can´t believe all what you see. I´ve seen that done several times at "the spinekids´forum". It is specially sad, that forum is mostly full of teens, that have felt tricked.
When somethig seems to be too good to be real, perhaps it´not true.

[gerbo]

The jury is still out on the overall effectiveness of the brace. No real Study has been done by anyone without a interest in the outcome.

Cannot but agree with this. This is why it is important that we do exchange experiences amongst ourselves as besides the one study (of an interested party) there is nothing else to go on. Saying that, personal experiences seem to fit in with study and whether it is working or not, life is so much more bearable for our children wearing this rather than hardbrace (for which the actual evidence is not brilliant neither)

[Celia Vogel]

Okay Gerbo.... are you ~really~ who you claim to be or just a figment of our collective imagination ;) :D



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[cherylplinder]

I don't suppose there is any more positive proof than the child standing right before your eyes that is beating the 100% chance of surgery odds with this brace and looks great!
It is proof enough for me.
I was anxious at first. Get anxious with every visit. But this brace has already been worth the cost and the trouble.
Three or four inches of growth and close to 20 degrees improvement.
Blessed.

[christine2]

Great discussion!! I can not wait till I can chime in!!!

Christine

[christine2]

I am back. The kids and hubby are tucked in to bed and I need to vent. My daughter had her MRI today, it was a bit nerve racking due to the sedation but all turned out well. I just need to wait for results. The last month has been crazy, my mother has been sick. I have been in and out of Dr. appts with her. She has had CT scans and MRIs and we have not been able to determine the cause of her dementia

As far as the discussion with braceguy. That is very interesting. We were origenally scheduled to see a chiro for spinecor the cost was around $4500. Fortunately we were rerouted to Montreal by someone on this forum. Thank goodness my daughter was an excellent canadate for the brace. The way I see it is at my daughters age and size of curve spinecor is our only option to reduce the chance of surgery.

It is sad that people are taking advantage ($) of this invention. Although spinecor can only cater to a small population (to reduce curves) it is still a wonderfull alternative to ridgid bracing.

Braceguy
is there someway you can contact spinecor and let them know that their invention is being discredited by these chiropractors you speak of.

[MATJESNIC]

I do believe that many of these chiropractors really do believe in what they are doing. They believe in the exercises and the adjustments. Remember chiros adjust their own kids from the time they are babies. Most people don't believe in that.

With that being said, I do think many of them are overcharging people for the brace and for the appointments. Body suits cost a lot of money from Spinecor regardless.

When we saw Dr. Deutchman there was a child there who he said didn't need a brace because his curve was too small.

But I do resent not being asked whether or not I wanted vestibular testing and instead was presented with the entire package of brace and testing.

I do think Dr. D. knows a lot about scoliosis and the Spinecor. Unfortunately when someone has a private office vs. being in the hospital, the fees go up right there.

Dr. D. was extremely kind to Nicole and spent about 5 hours with us that first day. I really loved the way he talked to Nicole. The ortho who diagnosed her was cold and unfeeling. She was crying in his office and he didn't even acknowledge that.

But had I been advised to go right to Montreal from the start, I would have thousands of dollars more in my wallet right now. That is a fact.

[gerbo]

Okay Gerbo.... are you ~really~ who you claim to be or just a figment of our collective imagination

ok, I better come clean....

[gerbo]

had a shower, feel much better now :rolleyes: :rolleyes:

[Celia Vogel]

ok, I better come clean....

What I'd like to do is delve into the enigma called "Gerbo" Who is this "Gerbo" ? :D


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[gerbo]

there are many variations.....

http://users.rcn.com/rfinley/enigma.mid

[Sherie]

Braceguy,

I'm curious now, my daughter was braced in the Spinecor by a chiropractor. She has an s-curve, lumbar is structural. At the time, her lumbar was 42 and thoracic about 30. Would she have been a candidate for this brace according to the protocol you were taught? After the 3 month xrays, when it was apparent it wasn't helping, we quit going to him and ultimately quit using it at 6 months. Also, I was recently told by one of the ortho. surgeons, that he rarely braces lumbar curves because they just don't respond to bracing well due to lack of structural support (in contrast to a thoracic curve that is a "closed" system with the ribs and sternum). We are interviewing surgeons now for surgery this summer.

[MATJESNIC]

Also, how much did she go down in her brace? Do you remember?

[Sherie]

It was Dr. Smouse here in Houston, the funny thing is, the dr you described could have been him. I wasn't happy with the ortho. surgeon we were sent to, so I was very surprised by the amt of time Dr. Smouse spent with us reviewing xrays, explaining scoliosis, etc. He does a great sales job for sure. We tried his program as I said for 3 months, including bracing, nutrional supplements and therapy but realized it wasn't helping and quit at that point. When you consult with them, there's no reason to doubt their sincerity, they have the Spinecor credentials up their on the wall, he's been fitting since 2004 and I have no doubt he has helped people but it is at a high cost.

Her initial correction was only a few degrees and stayed at that the entire time. I had considered going to Montreal and had spoken with Dr. Couillard by phone but she sounded somewhat doubtful herself, stating a lumbar curve greater than 40 deg. is usually rigid. But I agree, if you can travel to Montreal, that is definitely the best way to go. For us, I was thrilled at the time that he was only a few minutes away and only one of a few in Texas fitting the brace then, so it seemed like the logical choice to me.

[Celia Vogel]

Braceguy,

How long have you been fitting children with the Spinecor brace and why are you only seeing a few degrees correction??? This seems to contradict the results quite a few of us are getting. What's your interpretation for the fact that Drs Rivard and Coillard are getting great results with curves above 30 degrees in children that are in the midst of the PHV period and Juvenile curves above 30 degrees??? Why is it so difficult for everyone in the States to replicate these results? Is this a learning curve problem for everyone in the U.S and not for the rest of the world???? I wonder what kind of success orthopaedic doctors in the U.S. are having :confused:


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[MATJESNIC]

Sherie,

I have found that the children who only go down a few degrees in brace are the children who will not benefit from Spinecor. You have to go down at least 10 degrees to know that it is worth trying. My daughter went down about 17 at her initial fitting. Now she goes down 10 on each curve. But the jury is still out on whether it will work for her in the long run.

Braceguy,

I know what you are saying about these kids with their tiny curves. We don't know if they would have progressed without the brace. But the fact that they are going down is what is promising. Some of these little kids with their little curves are seeing amazing results.
We put our daughter in it even though she was at a 40. For us, it was a choice of Spinecor or just leaving her alone to progress to surgery. We would never have put her in the hard brace.

I agree with you about surgery. We fight it. We don't want our children to have it. But when it's our only alternative, we thank God that it exists and that it has come such a long way. It is true, I have talked with many teens who are doing so well after their fusion.

[Sherie]

I've been fighting surgery every step of the way and I still haven't really come to peace with it even though I know she needs it. It's extremely difficult to put your healthy child through something you know is going to cause them a lot of pain and you're still not 100% sure the results will be satisfactory in the end.
We tried the alternative therapies and I know now they don't work, guess I'm just that kind of person who has to learn the hard way. ;) When the only thing left is surgery, my attitude is why not try, there's nothing to lose at this point except money and who can put a price on your child's health? I'm not especially naive, but I have never dealt with any kind of health issues of this magnitude, it's been a real eye opener for me.
I'm glad you've exposed this so at least people will be aware of it should they choose to go to a chiropractor. I can't believe how you hit the nail on the head, you really could have been talking about Dr. Smouse. I think he did train with Dr. Deutchmann (is that who we've been talking about?)
We're interviewing and looking for surgeons now. Because of her lumbar being the structural curve, I'm particularly concerned about loss of flexibility so we are getting several opinions.

Melisa
I'm so glad for you that the brace is working and hope you have continued success. Has she gone through her big growth spurt? When Sheena was diagnosed, she was still like a child, now she's a sweet, young lady, what a difference 2 years makes.

[MATJESNIC]

Sherie,

Like I said before, I don't know if the Spinecor is working. I know we are still in the game. But don't know what the outcome will be. Nicole had her major growth spurt before she was diagnosed. But we didn't know it. She had a minor curve that her regular doctor saw. One year later she was at 40. Eight months later she got her period and Dr. Coillard said the year before the period is the most critical growth spurt. So we did the math and figured out that was when she got to 40. She is only at a risser 0, but 5'5" fully mature on the outside. We aren't sure why. But Spinecor works best on risser 0, so we're hoping it is doing its job.

As far as surgery is concerned, what has helped me the most was talking to as many Parents and kids who have gone through it. Especially the ones who had gone through it at the hospital that we would choose. The mind eventually gets used to the idea. When you talk to these kids who have came out of it so well, you begin to accept it. Like I said earlier, how many people in this world wish there was a surgery for their affliction. We have come a long way. I'm just glad it is not 30 years ago when we took about surgery for scoliosis. They have come a long way.

Christine,

I meant to say that most likely the MRI will come out fine. And no matter what, everything will be okay!!!

[pat]

Wow, what a post . . I've been reading and it's disturbing to hear how the brace is getting tainted. My daughter's been in her Spinecor brace for over a year, she was 20 out of brace, and in brace she's a 6. Because her older sister had fusion surgery over two years ago, we put her in a brace early. Braceguy, you're right, our MD/ortho surgeon would not put her in a brace at 20, even with her family history. By the way, the post-op daughter's doing great. We're very pleased with the Spinecor Brace.

[christine2]

WOW this is all very interesting. I had an appt. with Dr. D in New York. 2 weeks before our visit I was steered to Montreal by someone on this forum. I think back and remember how disappointed the ins. coordinator at Dr. D's was when I told him we were going to Montreal. (lost a sale?) And thinking back I was skeptical going to New York because of the cost and vest. testing. As soon as I spoke to Dr. Rivard I felt as though the brace was a more legitamite treatment.

We have had an excellent experience with spinecor. My daughter 6 yrs old at 33 degrees was a more than likely surgery case. Because of spinecor we at least have a chance to avoid it. No one knows what will happen long term but right now she is happy and her muscles are strong.

My opinion is that spinecor success is limited acording to the degree of the curve and to the age of the child. What needs to be done is awareness. Awareness of scoliosis in general as well as early detection and the use of spinecor on young smaller curves. This wait and watch theory is dangerous. especiallly when there is a brace like spinecor.

In order for the brace to even get a chance the use of it needs to be limited to Orthos. All that braceguy says makes sense.I am going to talk to Dr. Rivard personally (We see him March 1st Yeah!!) and see if he is aware of the problem and give him my opinions.

Christine

[Celia Vogel]

I believe there is a reluctance by U.S. doctors to accept non operative measures in the treatment of Scoliosis and anyone who comes along with a non operative solution is suspect. Recently one mom told us that her ortho at a well respected Shriner's hospital called the Spinecor brace a "scam" and claimed a lawsuit underway?!!!! Many parents of children with infantile scoliosis face the same kind of resistance to serial casting for their children even though this treatment was *proven* to reverse progressive curves 40 years ago!!!!. Think about the countless lives that have been ruined by doctors would rather see a baby progress to the point of surgery. Nowadays when doctors talk about growth modulation they refer to ~operative~ measures to alter the natural history of scoliosis either by vertebral stapling or tethering. For the most part, no mention is made of non operative treatments. Vertebral Stapling will probably gain faster and wider acceptance by medical doctors than the Spinecor when treating "small" curves. It's unfortunate there are a few bad apples in the chiropractic field that are ruining things because I honestly don't believe the Spinecor will gain wide acceptance by the medical establishment in North America for many years to come unless the push comes from the families involved. There is no desire to "learn" how and why it works because the alternative is so much more profitable for many concerned.

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[mariaf]

Hi Celia,

In case anyone got the wrong impression, I'm sure you were not talking about Shriners Hospitals when you said:

"the alternative is is so much more profitable for many concerned".

As mostly everyone surely knows by now, Shriners Hospitals do not charge a penny for their services - and the stapling surgeries are mostly performed by Dr. Betz and his team at Shriners Hospital in Philadelphia. In addition, the doctors at all Shriners Hospitals make a flat salary, so whether they do one surgery per month, or fifteen, there's not an extra penny in it for them. Probably one reason why the system works so well.

I do agree with you that with some other doctors, that sometimes (not always) money is a factor. That's one reason I am such a fan of Shriners Hospitals - I know that their only focus is on what is best for the child, not on money - they do not even bill insurance companies because they don't wish to be paid for their services.

One mom I know recently saw a doctor at Shriners in Philadelphia, expecting to hear surgery because of the degree of curve, which was on the high end of the "borderline" area, and was told that since her daughter was done growing, she would not require surgery unless she and her family wanted it for cosmetic or other reasons - but the doctor was NOT recommending it.

I, too, get angry when I hear chiropractors or ANY other doctors exploiting desperate families for money! It sounds to me like your Spinecor doctors in Montreal, like our team in Philadelphia, are NOT in it to make a big buck. Aren't we fortunate, as parents, when we find such wonderful doctors in whom we have so much faith!!

[Celia Vogel]

The mom I was referring to was "My Little Angel" and I don't know which Shriner's hospital it was.... I know for sure it wasn't Shriner's Philly. Dr. Betz is an amazing doctor and the work that's being done on vertebral stapling is remarkable!!!! However, I have an issue with subjecting children with 20 degree curves to a major operation - this is just my opinion. :rolleyes: I was making an observation ( ;) )that at the end of the day, surgical procedures such as vertebral stapling, tethering or rib resection will take precedence over a viable non operative solution like the spinecor to address "small" curves.


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[christine2]

Celia
I agree totally Unfortunately if spinecor is continually discredited it will never become widly used for those small curves. I am taking advantage of the awareness week the spinekids have come up with. We need to get word out for early detection, and early intervention. We need to try to get scoliosis week recoginzed nationally then take advantage of that week to inform parents.

Christine

[MATJESNIC]

Thanks, Braceguy,

I have a question for you that is unrelated and I'm not sure if you know the answer to this. My daughter had her major growth spurt, has had her period regularly for almost a year, looks completely mature, according to statistics is probably done growing (maybe an inch left if anything) but is at 0 risser. Well, she was in Dec. when we were last in Montreal. Any thoughts about this?

[mariaf]

The mom I was referring to was "My Little Angel" and I don't know which Shriner's hospital it was.... I know for sure it wasn't Shriner's Philly. Dr. Betz is an amazing doctor and the work that's being done on vertebral stapling is remarkable!!!! However, I have an issue with subjecting children with 20 degree curves to a major operation - this is just my opinion. :rolleyes: I was making an observation ( ;) )that at the end of the day, surgical procedures such as vertebral stapling, tethering or rib resection will take precedence over a viable non operative solution like the spinecor to address "small" curves.


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Just to clarify, 20 degree curves are not routinely stapled. In general, it usually has to be around 25 or so (I say "in general" because, of course, there are individual factors to consider).

A while back, there was a boy whom Dr. D'Andrea saw (I actually referred the mom to her). He presented with a curve of around 20-21 degrees. He had started out just under 30 degrees, and had been braced by another doctor. The boy really wanted to ditch the brace and get the stapling. (Yes, it's a major operation but much less invasive than fusion and thank God every child I know bounced back in a few weeks with no complications - so, yes, it is surgery - but as surgeries go, kids who have had it have done wonderfully.)

Anyway, Dr. D'Andrea suggested a compromise - that since he was responding fairly well to the bracing, which he had only been wearing for 4 or 5 months, that he try it "part time" for a while, and just wear it at home for 12-16 hours a day, and come back for another check up. At the subsequent check up, his curve was holding with the part-time wear and that's where they stand now. If his curve progresses, then Dr. D'Andrea will consider performing the stapling.

Some parents I have spoken to feel that the stapling has a better chance than ANY brace of helping their child avoid fusion later on.

And although I know the Spinecor is more comfortable than a rigid brace, it's still a brace - and while I'm not saying that it isn't a great option, there may be others who would prefer the stapling in order to avoid years of wearing ANY type of brace. Again, it's a personal choice.

Nobody wants to put their child through surgery - but sometimes a parent weighs all the options and feels that a surgery like the stapling may be the best overall option with the highest chance, in their opinion, of trying to achieve their goals (ex., avoiding fusion). I guess everyone sees things differently. Hopefully, we all make what turns out to be the best decision for our precious children.

[MATJESNIC]

Maria,

Well said. It makes perfect sense to me.

[Celia Vogel]

Maria did make some excellent points however... I don't think the Spinecor will be an option or a choice for ~many~ parents unless they're willing to travel to see Dr. Rivard in Montreal or else undergo treatment with the "vulture" chiropractors or a select few orthopaedic surgeons. In the near future, most will be offered the choice between rigid bracing, vertebral stapling or some other experimental surgical procedure.


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[MATJESNIC]

That would really be too bad. I wonder how Spinecor is doing in other countries.

[christine2]

I am going to ask Dr. Rivard if I would benefit from spinecor. I have kyphosis. I manage pain thru Chiropractor and do not expect a correction. I would like pain releif. Right now I must see my chiro every 3 weeks or else my muscles start to spasm. I will continue but would not mind trying something else to see it it would help.
Christine

[MATJESNIC]

In other words, her bones are still immature and flexible even if the outside of her is mature and probably done growing. The million dollar question is which aspect is more important in determining whether nor not she will progress. The fact that she is still at a 0 with curves over 40 or the fact that she is past her major growth spurt, mature on the outside and probably done growing.

[MATJESNIC]

Potential for growth, potential being the key word.

Christine,

There is a boy who lives near me who has kyphosis and is in the Spinecor brace with Dr. Rivard. Of course he is a young teen and is still growing so that is a different situation than with you. Just wanted you to know that Dr. Rivard was treating his kyphosis with a spinecor/

[MATJESNIC]

Yes,

I understand that. My point is that people think when someone is at a 0 risser it means they have lots of growth left. Dr. Rivard said you can be at a 0 and be done growing. When we went to Shriner's to inquire about stapling, as soon as Dr. D'Andrea heard that Nicole just got her period, she said she is not a candidate. She didn't care that she was at a 0. She knew her major growth spurt was behind her. In our family, that means only an inch or two left.

[AILEA]

Melissa,
My daughter’s case it’s similar to yours; When she was diagnosed, she was Risser 0, although she was more than a year post menarche. Our ortho, (Well our orthos) told us, that Risser 0 doesn’t mean than you are going to grow up a lot, only that is it possible to grow up until you reach Risser 5. In fact, since the diagnostic, more than two years ago, she has grown only a little, around four cm (1,5 inch??). and she is still between Risser two and three, more than three years pots menarche.
I think she has her growth spurt, the summer I realized something was wrong with her back; She grew several cms. in only two months, and it should be then when her spine curved. I suppose it was a little curved before that, but I didn’t realize it, and at the end of the summer it was so evident.....Well, I’m rambling…

Braceguy,
I think that spìnecor works better with thoracic and dorsolumbar curves, and when the curve starts in a very low vertebra, it’s more difficult to have a correction with this type of brace. I’d like to know what’s your opinion based in your experience

[MATJESNIC]

Ailea,

Yes,

It sounds like our girls are so similar in that way. Thanks for confirming what I thought. Nicole will most likely be the same way, only an inch or two more after the major growth spurt. Please remind me of her age, curves, and time in the brace.

Braceguy,

Why did you say, "Excuse Me?"

[MATJESNIC]

oh I love Steve Martin and I remember when that phrase was really popular. I know, I am dating myself!!

[AILEA]

Melissa,
My daughter is 15 years old now, and she was diagnosed with 38ºL and 19ºTcurves (Sept 2004). She wore the spinecor since few weeks after that, until last spring. She is now wearing a hard brace.
We’re still waiting for that Risser 5, so we could overcome this step;
On the other hand, due to the degrees of her mayor curve when she was diagnosed, in the borderline, our ortho has advised her to continue wearing the brace part time, perhaps only at night, for several months or years after she reaches the skeletal maturity.

[MATJESNIC]

Ailea,

Now I remember. There are so many kids to keep track of. What are her curves now? Where do you live?

Dr. Rivard sometimes keeps girls in braces until they are 16.

Nicole has developed a bad irritation to the thigh bands, especially one on leg. All that sweating at dance sometimes really irritates that area. Any suggestions. For those who do the mole skin, how do you wash the brace with that on?

What type of cream would be best on it?

[Celia Vogel]

Hi Melissa,

We use the skin of a mole :D and remove it prior to washing the thigh bands/crotch straps and then once the pieces are dry, we apply new moleskin. I've read of people using biking shorts, but I'm not too sure about the logistics of that. If Deirdre gets a sore on her leg from the thigh bands, I apply a bandage and it heals within a day.


*******

[MATJESNIC]

Thanks, Celia.

this time it looked really bad. I agree about the shorts. Don't understand it. I will do those things for her today when she gets home. Now that she wears a strap under her arm, that area is getting red and sensitive as well.

Melissa

[christine2]

Quick post
We had an excellent visit in Montreal!! Her curve is down to 5 degrees!! We are all tired, I will elaborate very soon.
Christine

[MATJESNIC]

Christine,

I am sharing in your joy!!! How awesome for all of you.
Seems like the younger the child, the better the correction. Also, the smaller the curve, obviously. I can't imagine what it would feel like to get news like that. Kind of like winning the lottery!! Here's to continued success in the Spinecor!!

[mpj]

Christine, what excellent news!

Sarah

[Kalarasy]

I am very happy for you. I am glad that the brace is working. We have an appointment in July and I can't wait to see what's going on with my son's back.
Adriana

[Celia Vogel]

Oh man, this is soooooo good!~~~ Can things get any better??? :D Christine, you must be so relieved. Now you'll have to change your signature from 11 to 5 degrees LOL!!


*******

[AILEA]

Melissa,
I’m from Spain.
Answering your question... I don’t know for sure what her curves are now; at her latest out of brace x-rays, two months ago, both curves were in the high twenties, but the x-rays were taken just after few minutes after she took her brace off.

Christine,
Congratulations, is amazing the great correction this brace is able to obtain with those young children. That makes me think...If only my daughter was younger when we realized.....
I agree with Celia, you should change your signature!!

[christine2]

I did it, I changed my signature. The visit was exhilerating. Dr. Rivard was very optimistic that the correction would hold and even may go down more. At one point the word "zero" was said.

We had a conversation about the Chiropractors using the brace incorrectly. He is very aware of the problem and is trying to resolve it. I left Montreal with a disk of all of her x rays and plan to send it to our Ortho here. The Ortho here showed some cautious interest. I say the proof is in the puddin.

At this point I still can not believe the results we have gotten with Spinecor. I do realize that there is still a chance for a negative change but for now I feel in my heart and head that my daughter may be one of the few children who cured of Idiopathic Scoliosis.



Christine

[raquel y ana]

congratulations Christine
I´m really glad for you. Such good news.
I am the one from Spain (also 6 years old daugther, 35º). I´m waiting for our IMR and next doctor visit and then I´ll go for spinecor. I want my daugther having such good results

[gerbo]

this sound all so good christine. Very happy for you

[Carly's Mom]

We just took our daughter to Houston to see Dr. Marco and Mr. Gomez. They put the spinecor brace on her but she is complaining of it hurting her back. The right side of her spine. The bodysuit that came with it is too small so she has just been wearing a t-shirt and her panties. Has anyone else's child had pain the first time wearing the brace? :confused:

[MATJESNIC]

Carly's Mom,

My inbox was full. You can e-mail me at matjesnic@comcast.net.

I don't remember the brace hurting. But maybe if one of the straps is tight, it will hurt in the beginning. I can talk about things further in e-mail if you would like.

[Carly's Mom]

Melissa,

I tried emailing you but it came back. Hmmm.....

Here is mine. yellowrosetx1@charter.net

~Susie

[christine2]

Hi everyone

Check out www.paradigmspine.com go into press releases. It looks like Dr. Rivard and others are on the edge of discovering a genetic test for scoliosis!

It is a very interesting site. There is also info about a spine inplant. Not sure if it will be usefull with scoliosis but the way research is going the skys the limit!!

[MATJESNIC]

Thanks so much Christine. Everybody, be sure to look all the way to the right so you can see where you have to go. This just confirms to me that we are seeing some amazing orthopedics in Montreal. Here's hoping our children will someday benefit from all of the good that is coming into the field of scoliosis.

[Celia Vogel]

I'm missing something here ;) Which article is it?


******

[christine2]

Celia
All of the articles are fasinating. The one I was most interested in was the one about the blood test which Dr. Rivard is conected with.

[Celia Vogel]

Ohhhhhhhhhh.....Okay! :D Thanks Christine, that's a great website!

Maria F

Happy Birthday !!!!

[mariaf]

Thanks, Celia!

[mylittleangel]

I would also like to extend a HAPPY BIRTHDAY!!!! to mariaf.You personally have made an impact in my familys life.Your supportive advice and genuine care is overwhelming and needs to be acknowledged!!So from my family to you thank you.

As for my opinion on the spine cor debate going on,I truley dont know.I do know it truley intense.I am not giving my personal opinion either way!! I have learned my lesson!!!But I am a little concerned that the 3 Drs I have mentioned it to will not speak of it.THEY were very against it.The only people I have heard speak highly of it are patients or their family.Why is that?As a parent I undeerstand 2nd and 3rd opinions even Drs make mistakes.But 3 Drs had the same reaction to it,I am a little scared to throw that out the window with my daughters health on the line.If this brace is so great why are there so few Drs willing to support it?

[gerbo]

good question..... maybe you could ask them; "some parents seem to be seeing very good results, in line with published study, any idea how that's possible??". I would be interested in their replies. (and maybe at the same time ask them how good their results are with hardbracing (if they know, lots of hospitals will not keep a systematic record I would guess)) Another question could be what they actually thought of the article describing the results (which was published in 2003). If they genuinely are interested in treatment of scoliosis they should at least have read that, which would go in their favour. If they haven't read it, well, I would not take much notice of their views than....

I am happy with constructive critisism, I do however sometimes think that lots of clinicians are not particularly interested in the nonsurgical treatment of scoliosis, and will therefore not put much effort or thought into it, possibly contributing to less than good results, resulting in further strengthening of negative attitude, etc, etc. Anything what doesn't fit in with this negative image/ attitude must by definition be "too good to be true, or even fraudulent....."

[mariaf]

mylittleangel,

thanks so much for the kind words!! I think it is true of everyone on this great forum that we take pleasure in sharing what we have learned with others and helping kids with scoliosis whenever we can. Nonetheless, it was very sweet of you to say those things :)

best,

[Celia Vogel]

...As for my opinion on the spine cor debate going on,I truley dont know.I do know it truley intense.


Who's intense? Gerbo...yes. I'm thinking back to his variations on enigma LOL!! Very smooth! ;) We have to follow our own path, where ever it may lead. I'm cool and relaxed despite the fact that we have our followup next week. Nervous ? Yes. I am planning to enjoy our week in Montreal.


*****

[gerbo]

it is indeed very much about finding, choosing, being comfortable with the path we choose, as (mostly) there is no going back on decisions taken. We all need to be prepared that in so many years we could well be looking back and having to say, no, it hasn't worked out as I expected, but at least I did the best i could, given the circumstances and information available.

I don't think there are many absolutes in this game (well, i can think of a few, I suppose, but i won't mention vestibular testing), it is really, whatever you feel comfortable with, and whoever you feel you can trust.

[mariaf]

gerbo,

I don't think anyone could have said it better!

[gerbo]

two compliments on one page, starting to glow now. :D :D

[mylittleangel]

Just to calrify I wasnt calling a particular person intense,just the topic of spinecor as there are so many differences of opinion.It can make your outlook on the brace a little confusing at times.I understand and respect everyones opinion.We do have to find our own way,and pray it was the right one and realize that every scoli patient is different so not everything will work for everyone.
Gerbo my appologies if it seemed that comment was directed at you,it certainly was not.

[mariaf]

mylittleangel,

I can, of course, only speak for myself - but I don't think you have anything to apologize for - nor do I believe that you offended anyone :)

[gerbo]

honestly MLA, I did not think one moment you were aiming at me personally, no worries there.

[Celia Vogel]

I definitely think Gerbo is intense and full of passion! LOL!!! :D


******

[gerbo]

although I do know that I can get intense (as I have been told by people in the know) (edit; did not know celia was going to state this as well in previous post). But then in search of "the best way forward" or the elusive "magical bullet", you do have to be intense, critical, inquisitive, as you often find that the professionals who are supposed to know and advice, base their opinions on habit, prejudices, intellectual laziness and plainly sloppy science. And in this game you cannot rely on that.

I am genuinly interested to know whether the 3 doctors you have spoken to base their opinion on careful consideration of the facts or whether it is down to plain lack of knowledge and prejudice

In the end, we are all in the same boat, the wind is blowing, sea is rocky and a calm sheltered bay is hard to find.....

[mylittleangel]

Gerbo,
To be completely honest all three Drs didnt talk much at all on the topic.I asked about it and they pretty much had the same responce.Two of the Drs are in AR and told me the is no convincing evidence that it works,and they do not suggest it at all.The other in Mo told me NO way !! Was also pretty concerned about from who and where I even heard about it and to stay away from it.The discussion went no further.So as you stated it could be lack of knowledge,predjudice or any other reason.What concerns me is the intensity that they declined to even discuss it as an option.It felt as if the conversation of spinecor brace was the plague

[gerbo]

in a way, "no convincing evidence" is strictly speaking correct, as there is only one large scale but unconfirmed study and this could be seen as a reasonably informed viewpoint. The "absolute no" person most likely has no facts or evidence to base that opinion on (in a way has "no convincing evidence" ), so a bit of lack of knowledge or prejudice could be at play there.

What did it for me was; lack of benefit from hardbrace (we tried it for a year), the absolute hate lisanna developped for the hardbrace, a fair amount of medical support (partially as consultant thought that there is little evidence for anything at all, so you might as well try...), and the experiences of people posting on these forums, which are reasonable consistent and in line with the published results.

no certainties though (whatever you do)

[Celia Vogel]

Gerbo,

I wouldn't put too much weight in what these idiot doctors have to say! We're trailblazers to certain extent and forge our own way. I've read enough about scoliosis to know the difference between right and wrong. As for Deirdre... we're doing remarkably well, thank you very much! If I had listened to conventional wisdom five years ago, my daughter would have had surgery by now. Last time we checked, her curve was "1" degree in the Spinecor brace.


*****

[christine2]

Celia

Good luck next week. I hope you have the same exhilerating feeling as I did when you walk in to Dr. Rivards office for results.

I also feel as though we are trailblazers. Dr Rivard and Coillard are our guides. I am so impressed when Dr. Rivard is as excited about results as we are. I truley feel he is doing all his work for our childrens future.

As for Orthos not recommending Spinecor. I think that these doctors are over worked and have a hard time finding time to look into alternatives. I spoke to a friend today and she pointed out that the docs in the USA are afraid of alternative medicine. They are taught a certain way and to deviate from that is difficult. Our Ortho at Childrens Hospital in Connecticut told us to stay with spinecor that he did not have anything that would be more effective. I really think that he may see it as a possible treatment for some of these children. We all need to keep informing our orthos in the states of results so that some day the brace will be accepted. We also have to try to steer parents away from doctors that are not using tha brace properly and damaging its integrity.

As far as I am concerned spinecor has been the ONLY possible treatment for my daughter. I will be forever gratefull to the parents on this forum for informing me about it!!!
Christine

[mpj]

Our Dr. said he thought we had nothing to loose by trying SpineCor, except for money of course. However, he did think the price was "reasonable." He was honest about not knowing too much about it, and said he was uncomfortable that there was not a controlled study done on the brace. However, he said he thought it was fine to go ahead, try it out and see how it works. He also said that we should be prepared to change our plan of action if the brace doesn't work. That sounded like good advice to me, so we went for it. So far, so good. However, one thing to keep in mind is that our daughter's curve was caught at 24 degrees. Not a huge curve, but not something to ignore either. I think our Dr. felt like we had some time to experiment.

Sarah

[malka22]

Christine2:
I am amazed & oh so happy for you that your daughter's curve went from 33 degrees to 5 in a Spinecor !!!!!!!!!!! That is so awesome. I've never heard of any hard brace getting that kind of curve "correction." To my knowledge, all that we can expect from hard braces is for them to HOLD the curves where they are, if genetics allow it. Go Spinecor!!!!

[GeorgiaMom]

I just wanted to give a follow up to my daughter's progress. I have only posted a couple of times, so I'll include her history as well so that you know the whole story.

My daughter will be 11 in April and at her annual exam last year her pediatrician noticed her shoulders were uneven and suggested we go see an ortho. The ortho diagnosed her with scoliosis with a curve of 6 degrees. He said she may grow out of it and asked that we come back in 6 months for a follow up. In November we went for the follow up and he said her curve had progressed to 34 degrees! He was stunned and wanted her to be fitted for a Boston brace. Of course, we wanted the best for her and dutifully scheduled her appointment with the orthotist for mid-December. At this time we were not aware of any other options besides other hard braces. Fortunately, the day after she was casted for the brace, I read an article in our local paper about the Spinecor brace and learned that the chiropractor who used this brace was just down the street from us! Dr. Brian Ouellette with Maximum Health Chiropractic in Alpharetta, GA, measured her curve at 25 degrees and in brace she was immediately down to 15 degrees!!

3 month follow up visit - Yesterday we had her three month follow up and in brace she is at 6 degrees! Dr. Brian wants her to come back in 3 months for an out of brace x-ray and, if she stays at 6 degrees or is even better, he is going to recommend she stop wearing the brace. We would then continue to monitor her curve, as well as use chiropractic care to maintain or improve, perhaps even to zero! Needless to say, we are ecstatic, especially my daughter, as she may now get to go to summer camp without the brace.

I have to say that I was initially skeptic about the chiropractic care and even the Spinecor, but Dr. Brian has been fabulous and has never taken advantage of our ability to pay. He has trained with the surgeons in Montreal and is in constant contact with the folks who now own the product. In fact, I met Andrew at our visit in January. Dr. Brian does not condone the practices mentioned by other chiropractors in this forum and, I believe, he is the next best option to going to Montreal. We are very fortunate to have him so close by.

I wish you all well and continued success with your children as well.

Melody (Georgia Mom)

[MATJESNIC]

Melody,

Thanks for sharing your story. I am very happy for you and your daughter. There is a young girl named Lauren who wears Spinecor and goes there, I believe.

Just wondering if your daughter has had her major growth spurt yet? This should happen one year before she gets her period. This is the most critical time for young girls with scoliosis. Please be sure she is wearing a brace during that time. That is when things can get very bad. Even Dr. Rivard said sometimes the curve gets worse at this time even while wearing the Spinecor.

If they decide she should take a break from it, I would call Dr. Rivard for a 2nd opinion. You don't want to have regrets later on. I hope I don't come off pushy like I am telling you what to do.

I wish I had known about that for my daughter. But when we found out she was at 40 degrees, her major growth spurt had helped put her at that level. Now we are struggling to hold her curve.

[Celia Vogel]

Melody,

I have to echo what Melissa said and err on the side of caution. I remember hearing a presentation where dr. Rivard commented that the *minimum* amount of time in the brace should be two years? Congrats on the GREAT NEWS!!!!! :)

*****

[GeorgiaMom]

Melissa -
Thank you for your suggestion. We certainly don't want to make any mistakes with taking her out too soon. I am not sure if she has had her "major" growth spurt yet. She grew over an inch between May and November last year and then another inch and a quarter between December and end of January. She is at a risser 0 and has not had her period, but is has been showing signs of puberty for several months.

Thanks,
Melody

[Celia Vogel]

Melody,

I remember hearing in one of the SRS presentations that the peak height velocity period ends about 3 months prior to menses. However, that doesn't mean your daughter is out of the woods since doctors found in this one study that roughly 25% of children had the greatest curve progression during risser 4. The numbers are a bit sketchy because the last time I viewed the presentation was about a year and a half ago.... :rolleyes: The presentation is here at 10:15 a.m.

Peak Height Velocity as a Predictor of Curve Progression in Idiopathic Scoliosis

Talwalkar, Vishwas

http://www.istreamplanet.com/srs/default.asp?np=media&conf=3&edi=12


*******

[MATJESNIC]

Celia,

Thanks for that. I found that one and the one after that very interesting. Some of it is over my head. But basically I think they are not concerned with risser as much as they are concerned with other things. I am going to make a few notes so I can ask Dr. Rivard some of the specifics about Nicole when I am there.

I do know Nicole had her PHV about 16 months ago. Not sure what that means for her.

When they said some kids progressed during risser 4, did they say whether that was before or after their PHV?

[Celia Vogel]

When they said some kids progressed during risser 4, did they say whether that was before or after their PHV?

I just viewed the presentation again. The charts change very quickly so it's really difficult to follow but I think Dr. Vishwas said Risser 1 occurs on average 11 months post PHV and 90% of the patients had completed PHV by Risser 1. Did anyone else get a different answer? So to answer your question....PHV would most likely be over by Risser 4 and children at that point would be in the descending phase of growth. However.... 15% of children had maximum curve progression during Risser 4 so I would think that a small number like 10 - 15% were still going through a PHV at Risser 4 :confused: Is this possible?


Melody,

There is also a presentation by Dr. Rivard on that same page and I'm pretty sure he states the minimum amount of time in the Spinecor brace should be 2 years.


*******

[GeorgiaMom]

We have an appointment with Dr. Brian again on Tuesday, so I am going to share this presentation with him and get his input on the recommendation of a minimum of 2 years in brace. I know he was trained by Dr. Rivard, so he should be fully aware of their recommendations. It may be that since we are so close and since we will be seeing him on a much more regular basis that he would be comfortable taking her out of brace and then putting her back in if he sees any progression.

Thanks,
Melody

[gerbo]

previously up from 6 to 36 degrees in 6 months?? I'd be very cautious taking her out too soon. Too much too loose I'd thought. At least get a dr rivard opinion as suggested.

[GeorgiaMom]

Actually, the chiro measured her at 25 degrees before brace. The x-ray the ortho took was incorrect and I could see that with my untrained eye. So, it's really down from 25 to 6 in less than six months. Still a pretty significant reduction, but, from what I've learned, there's a major difference in 34 degree curves and 25 degree curves.

[gerbo]

6 to 34, 6 to 25, it remains a big jump.......

[structural75]

GeorgiaMom,

Congratulations on your daughters progress... that's great news!

I'm sensing a tone of skepticism and negativity though coming from some others who have replied to this news. I don't recall any of you being this skeptical about the Montreal Drs. when Gerbo and Celia reported back that their children now have NEW SECONDARY curvatures after wearing the spinecor.??? Would you have been skeptical if those two children were under the care of a chiropractor and that happened... ? I think it's pretty safe to assume so.

I think second, third and fourth opinions are always a good idea. But at the end of the day, they're all still "opinions". I think the Montreal Drs are doing a good job, but when they find a new secondary curve being caused partially from the brace and dismiss it as being inconsequential.... well I have to wonder about them as well as all the others that get put down here.

It sounds like GeorgiaMom is doing well under the care of this chiropractor. A second opinion won't hurt any, but discouraging criticism about the chiropractor's methods/bracing time line may be a little preemptive.

[structural75]

Braceguy76,

Braceguy: As for you calling me a snake,I doubt you'd be saying that to my face or the next spine you heard crack would be yours.No need for violent threats here! After all, you stereotyped his profession as snake-oil yourself. Whether you two agree on things or not, you can't help but understand how Sportsdoc could be upset at your highly slanderous remarks about his profession. He has every right to chime in and defend his livelihood. Your comments in previous posts were shared with many highly encourageable people on this forum. All it takes is one stranger, with his/her side of the story to tell to convince a lot of thirsty people looking for answers, justifications and security in the decisions they're making. Be careful about what you say and WHY you're saying it because it could personally effect many people involved, ...more than you might think.

You come from a field full of 'protocols', but the human condition seems to constantly defy protocols. We're not machines Braceguy76. Often our greatest achievements in medicine comes when we step outside of the box from limiting protocols and conventional thinking.

Albert Einstein once said, "The significant problems we have cannot be solved at the same level of thinking with which we created them."

I believe the protocols were set-up for several reasons... one being that it provides consistency for the spinecor study. I believe this is also part of the reason why the Drs in Montreal don't give the exercises to their patients that the spinecorporation recommends. When you add these kind of variables into the equation you face issues of varying degrees of compliance, which ultimately effects the accuracy and outcome of the study. It would no longer provide an accurate picture of the effects of the brace itself. But is it appropriate to limit the range of treatment strategies for these patients simply because of a "protocol" or a study? These MDs are depriving their patients of other useful compliments/adjuncts to wearing the brace for the name of 'science'. What about their health??? Doesn't the patients well-being and success trump a protocol or study?

Also, I find it interesting that you support insurance reimbursement for something that you yourself do not believe in 100%. Why should insurance companies pay for something that doesn't have substantial testing behind it (as you said yourself)? At the same time, you discredit the Medical practice of vestibular testing and rehab (adopted/utilized by these chiropractors) and ignorantly dismiss its potential relevance to scoliosis.??? I guess I can see how an orthotist would be viewing the body from a completely mechanistic standpoint. But the fact remains that scoliosis impacts and is sometimes caused by neurologic deficits. Although the testing is performed in part with the eyes, it is working through them as a reflection of inner ear/cerebellum functioning of primal coordinative reflexes and abilities. This is by no means far-fetched. And it may not have studies to prove its efficacy in regards to scoliosis yet, but it is anything but what you claim it to be.

If you want to approach this condition with mechanical devices alone, so be it, but leave the broader thinking folks alone.

I think we've seen what happens when we use a mechanical approach (ie bracing) all by itself. Secondary curves arise, rotations manifest, etc.... because you're just moving the strain in the tissue to another region of the spine, pelvis and body as a whole. The strain patterns that were previously holding the spine in its scoliotic curve may not be sidebending the spine as much anymore, but that doesn't mean it can't rotate, torque or compress the vertabrae. Something to consider.

[cherylplinder]

Structural,
Although this forum is open to all, I resent your hostile comments and verbal abuse of parents that are here to give and receive support and information.

I haven't researched your reason for being here. Do you have scoliosis? Do you have a child with scoliosis?

I don't feel that you are giving support to anyone and your "informative" comments are abusive.

I tire of your ire. Get a life.

[cherylplinder]

Structural,
Although this forum is open to all, I resent your hostile comments and verbal abuse of parents that are here to give and receive support and information.

I haven't researched your reason for being here. Do you have scoliosis? Do you have a child with scoliosis?

I don't feel that you are giving support to anyone and your "informative" comments are abusive.

I tire of your ire. Get a life.
__________________

[cherylplinder]

The parents and children that post are here because scoliosis can be extremely stressful. We need each other's support and care.


I am here because I have a need. These people have met that need and they don't deserve your abuse.

I have read MANY of your posts. They are all lengthy.

I am not about to research them all. Every time I read one of your posts it is abusive. That is enough research for me.

You don't need support OR information about scoliosis. You have no valid reason for being here.

I repeat. I object to your abusive posts.

These people have enough stress to deal with without your abusive posts. Period.

Get a life and leave these good people alone.

[gerbo]

Structural

I was going to stay out of this as none of this discussion was "my business". however, as you have decided to drag me into this (for no obvious reason) your good pal Gerbo I'd like to state that in your frantic efforts to prove your point you are being perceived (I am sure totally unjust and unintentionally) as aggressive, patronising, overbearing, annoying and certainly not helpful to a large group of parents who haven't got the luxury of closing the office in the evening and forgetting about their patients with scoliosis, but have to live with the condition and the distress it causes to their sons or daughters day in, day out, and with many nocturnal waking hours, even the nights are no escape. I know you are misunderstood and a victim of aggression yourself, and I am so sorry for that, but somewhere there must be some support forum for frustrated alternative practitioners you can go to get your own support.

As i have said before, I am sure you have lots of usefull knowledge and skills, unfortunately your approach to sharing this is causing great upset to many people who are stressed enough as it is.

[Celia Vogel]

If you folks are going to hold the "chiros" of the world accountable for inappropriate practices and negligence, then you should be willing to be held accountable for giving misleading statements and offering unqualified medical advice! Sharing your experiences and personal learnings with one another is one thing, but qualifying yourselves to determine what and who is legitimate is another altogether.

For someone who *claims* not to have any connection to chiropractors, you certainly spend a fair chunk of your time defending them - in particular a certain dr who will soon be under investigation for the very abuses you so passionately endorse.


Gerbo,

I agree! They should have a support group for misguided practitioners. Maybe dr. Copes can start one from jail???


******

[Celia Vogel]

:eek: Let's hope not... but I guess we'll just trust your clinical expertise on this one. From the x-ray it sure looks like a long gradual 'curve' to me. What happens to the strain from the primary curve when it's straightened with the brace? Maybe it goes on to produce a "new" secondary curve or contributes to the rotation I noticed in the x-ray.???? It certainly doesn't disappear... that would be phoney baloney.
Besides, in your other post you refered to it as a "curve". Was Dr. Coillard measuring a "kink" with a scoliometer? Do "kinks" have numbers as well?


My goodness you are so concerned about my daughter! Would you have been as concerned 4 years ago when her curve was 60 degrees and have recommended vestibular rehab to help? Maybe structural integration or weights on the head would have worked as well? Maybe her case would be beyond the scope of your practice since you deal mainly with minor curves that normally don't progress or do you claim to reverse progressive infantile scoliosis? Would you have recommended surgery for my daughter?

I trust Dr. Rivard and Dr. Coillard when they say the postural curve is of no consequence. My own copy of the x-ray allows me to see the pedicles up close and personal and they're beautiful - all the "eyes" are in full view. No rotation there! Your alarmist tactics are comical! Maybe this is why dr. Rivard and dr. Coillard are the great doctors they are and you are a schmuck!


*****

[structural75]

weights on the head would have worked as well?Yeh, that's intelligent :eek: ?

So now you've stooped to taking shots at my profession again? VERY MATURE celia. Again, don't slander something you don't know anything about... . I will go to the forum president here if you continue degrading every option for people other than your own 'personally approved' ones.

They should have a support group for misguided practitioners. Oh, you're so hilarious :p ... this has never been about my profession. It's been about offering advice to people asking for it. You may be the parents here.. but you're not the expert on every topic that arises. I've kept most of my replies on the non-surgical threads and regarding pain management. The only misguided person here is the 'parent' who believes they're a health care practitioner!

My goodness you are so concerned about my daughter! Would you have been as concerned 4 years ago when her curve was 60 degrees and have recommended vestibular rehab to help? Maybe structural integration or weights on the head would have worked as well? Maybe her case would be beyond the scope of your practice since you deal mainly with minor curves that normally don't progress or do you claim to reverse progressive infantile scoliosis? Would you have recommended surgery for my daughter?

Yes, of course I'd be concerned, who wouldn't. And no, I'm not one of you all or nothing types... so it is never about choosing one thing over something else... .Let's be perfectly clear on this lady, I NEVER recommended vest rehab for EVERYONE with scoliosis. There are preliminary tests performed to evaluate whether further testing and rehab might apply to each case. When are you going to drop the vest rehab thing? I DON'T DO VEST TESTING/REHAB!!! And now your insulting my profession again despite the fact that we do the same thing actively that your bracing does passively to the body. We just work with more precision and specificity than a brace ALONE can provide. AGAIN, here you go talking negatively about something you DON'T UNDERSTAND! Beyond the scope of my practice, ... no, it's not. Since when do I work only with minor curves that "don't progress"? How do you know what I work with? Making personal attacks about me is enough, leave your unwarranted remarks about my profession out of it.

You still can't show me, or anyone, that neurologic factors aren't involved in many cases of scoliosis.!!! Even your Drs believe it is relevant!!! So let others discuss matters, whether you believe in them or not is "of no consequence".

[amandap]

All the bickering back and forth is getting OLD!

There are parents on this board who join because they are really needing support/advice/help and if I were new I would have already been scared off.

The jabbing back and forth is taking away from the support group that once was.

It has become obviouse that several parents don't like each others points of views or opinions ~ so be it ~ can everyone please just agree to disagree. The purpose of these boards are to give people support and advice based on our individual experiences and opinions and then it is up to the poster to make a final decision. Rehashing and debating the same issues on different threads really serves no purpose other than turning people away.

Please stop.

Thanks.

Amanda

[gerbo]

you are right, sorry, not a word from me on the subject. promise. :o :o

[structural75]

Celia:I'm just naturally the kind of person that stands up for my beliefs and when some ignoramus starts insulting my doctors and telling me that I should be concerned about my daughter's 1 degree curve that's when they cross the line.You just don't quit! Couching an insult in an otherwise seemingly sincere post... sounds familiar. And I have never insulted "your" Drs. I actually think they're doing good work. But a second opinion, or second thought, on the 'secondary postural curves' is not a bad idea. I thought you said you didn't know the measurement of the secondary curve because you didn't want to interrupt the Dr.?
Surely if this happened under the care of a chiro or another orthopedic of lesser stature you'd be all over it casting doubts and suspicions on their integrity and abilities! And everyone knows that an 'inconsequential' postural curve can have influential effects on growth plates and cause bony deformation over a period of time if left untreated. So, sorry for my genuine concern about not only your daughter, but others experiencing a common 'phenomenon'.

I'm just viewing all of this objectively... which is difficult to do, i realize, when you have a child involved and you are trusting that the Drs. have all the answers. But I don't believe the Drs. would stand there in front of their patients and admit that there is a possibility that their invention is causing some unexpected secondary complications. However I'm sure when the two Docs sit down to talk that this is one topic that has come to the table.

Celia:you are a schmuck.Have I stooped to the level of calling you names lately? ??? Do you think that could add to the intelligence behind these conversations?

Celia:in particular a certain dr who will soon be under investigation for the very abuses you so passionately endorse.I don''t endorse anyones abusive behavior or practice, which is why I'm constantly dealing with YOU. He isn't being accused of doing 'vestibular rehab'... . Whatever happens with all of that happens... but it's not about his multidisciplinary approaches, it's about questionable fees and procedural methods.

Having a child with scoliosis doesn't permit any of you to degrade the opinions or advice of others just because you're not familiar with it. Agree to disagree, but slander of others is intolerable here as well! Celia has no basis to be insulting my suggestions, input or advice. And I don't think that those lurking on this forum who have utilized these complimentary methods in combination with their bracing and Dr. oversight are feeling very welcomed and encouraged to share their experiences... knowing that you'll be right there to discredit them and their chosen methods. Did you ever consider that perspective?

[structural75]

You don't need support OR information about scoliosis. You have no valid reason for being here.No, but others do so I beg to differ. And I believe that some are more qualified to be giving certain kinds of advice than others. Simply stated, Celia does not have all the knowledge to determine what is valid and helpful and what is not. There is no harm in offer my two cents on topics and inquiries that I have experience with.

And keep reading my posts, and this time don't be so selective. There are many original posts of mine that have nothing to do with you particular folks and contain NO abusive remarks. Again, if you continue to dish it out, then I'll continue to defend myself. Who are you to put others down when they're just trying to shed some insight on poeples questions?

This forum is clearly not just about support, but also about acquiring information.

[structural75]

Gerbo,

I'd like to state that in your frantic efforts to prove your point you are being perceived (I am sure totally unjust and unintentionally) as aggressive, patronising, overbearing, annoying and certainly not helpful to a large group of parents who haven't got the luxury of closing the office in the evening and forgetting about their patients with scoliosis, but have to live with the condition and the distress it causes to their sons or daughters day in, day out, and with many nocturnal waking hours, even the nights are no escape. I know you are misunderstood and a victim of aggression yourself, and I am so sorry for that, but somewhere there must be some support forum for frustrated alternative practitioners you can go to get your own support.

As i have said before, I am sure you have lots of usefull knowledge and skills, unfortunately your approach to sharing this is causing great upset to many people who are stressed enough as it is.

Talk about patronizing! Well, as evident by these 'discussions', I don't have the luxury of "closing the office in the evening and forgetting about their patients with scoliosis". I participate here because I care. And it actually keeps me awake knowing that there are a lot of misinformed and misguided people out there thanks to self-proclaimed "mavericks" like some on this forum.

Gerbo, I don't have the energy or will for another debate. Let me just close my portion of this 'discussion' with this. I think it's safe to assume that if I, or anyone else, came on here supporting a method that was effective at reducing or stopping or slowing the progression of a curvature (including bracing methods) and went on to also report that a secondary curve was presenting itself along the way.... you folks would be ALLLL OVER that individual/method, criticizing and expressing concern. If I told you that my line of work has helped slow, stop or reduce the curve in 20 or 30% of the cases but in some it gave rise to another curve.... Would you be as complacent and accepting of that or would you accuse me of doing more harm than good? Although I applaud the efforts of Dr. Rivard and Coillard, you have put them above reproach. Just a couple of years ago you folks were posting some pretty skeptical feelings toward the spinecor brace. Now the winds have changed and it seems to no longer need the scrutiny that it once endured. Objectivity is still important in all of this. My comments are not 'argumentative', but an attempt at objectivity. I'm sorry if you don't like my wording or articulation of my thoughts. But there are always two sides to the coin and it's become tiresome looking at the one. People here should have the right to promote dialog from both sides without dismissing or degrading the other. And I feel I have considered and shown respect for many different approaches... I just can't show respect to those who attempt to discredit my contributions. I have every right to defend myself from personal attacks.... but we could all do without the name calling and abusive remarks about ones professions. If we don't agree with someone, leave it alone... walk away and don't respond. I think the only time it's worth responding to something that we don't agree with is if it is false or inaccurate. Clarification can happen without name calling or negativity.

[mariaf]

All the bickering back and forth is getting OLD!

There are parents on this board who join because they are really needing support/advice/help and if I were new I would have already been scared off.

The jabbing back and forth is taking away from the support group that once was.

It has become obviouse that several parents don't like each others points of views or opinions ~ so be it ~ can everyone please just agree to disagree. The purpose of these boards are to give people support and advice based on our individual experiences and opinions and then it is up to the poster to make a final decision. Rehashing and debating the same issues on different threads really serves no purpose other than turning people away.

Please stop.

Thanks.

Amanda

AMEN!!! AMEN!!!

Well said, Amanda. The only thing I can add to your post is that I cannot understand why the folks in charge of this forum allow it to go on.

It surely DOES take away from the integrity of the forum - to the point that one parent told me privately that she no longer comes on the forum because she can no longer stand it.

We are here to share experiences and to support each other, as well as newcomers (not to scare them off). Anyone who wishes to bicker should do so OUTSIDE of the forum, lest we lose more members who would otherwise be contributing valuable information to parents who need it.

[structural75]

To all,

I agree this bantering back and forth needs to stop, and I'll gladly take responsibility for my role in it. But before I delete my postings in this thread I want to be certain that nobody (Celia) is going to be accusing me of "white washing" the discussion. So here is my fair warning (welcomed I'm sure).... .I don't care about who's right or wrong... there really is no right or wrong here. Out of respect to others who have neutrally expressed their frustrations with this I'm happy to oblige.

[Singer]

Good GAWD, isn't life a little too short for all of this nonsense? Why don't the main players in this drama get each others' e-mail addresses and "step outside"?

I agree with maria and amanda, that it greatly undermines the integrity and spirit of this forum. Then again, nobody HAS to read this stuff. But I do find it morbidly fascinating -- kind of like rubbernecking an accident.

[structural75]

Celia: I missed the one post where one of the semi professionals said "the next spine you hear cracked will be your own" LOL!!!! Of course this was all deleted before I had a chance to catch up.

Yes, that was a pleasant display of violent aggression by Braceguy towards sportsdoc. I thought you were a fan of Braceguy for letting the 'cat out of the bag'? What does "semi-professionals" attempt to insinuate? I thought we were moving forward from the insults? Isn't this precisely how it all starts? Degrading unnecessary remarks about people..... ...... .

Where is everyone now who claim that I'm the abusive one?

[structural75]

Thank you for deleting that last post Celia

[Celia Vogel]

I didn't mean anything by the term "semi-professional" and I didn't know it was Braceguy who said it. He is a hero in my books.


*****

[cherylplinder]

Structural deleted his replies to me after midnight last night. I wasn't posting to myself. It looks odd today.

[cherylplinder]

"There is no harm in offer my two cents on topics and inquiries that I have experience with. "posted by Stuctural

Structural,

No, there is no harm in that, but you persist in attacking others. Stop.
Offer your advice to those you think relevant, if you must, but stop the verbal abuse.

If we as parents, have evaluated and decided incorrectly, on the advantages of the path we have chosen for our children, we will deal with the consequences.

I didn't read any parents post, before I put Rachel in Spinecor, and take it as gospel. It was just, in my opinion, the parent's opinion, not a scientific study. There is one convincing study that offered me more hope than anything else I viewed. I am a medical professional. I am accustomed to evaluating medical evidence. And I am fully aware that the posts on this forum are just the experience of a select few.
On the other hand, the studies done on traditional bracing are not particularly encouraging, and they have had decades to compile evidence.

At this point, Rachel's results are far above and beyond anything I was led to expect with traditional bracing. I saw several orthopedic surgeons in the US for their opinions. Was I supposed to go with the traditional approach that held a 100% chance of surgery, according to the published studies?

So there we are.

You are entitled to your opinion, but your verbal abuse of these parents is out of line.

Stop.

Offer your medical expertise, if needed. But don't treat those of us on the cutting edge of advances in scoliosis as though we have a vested interest in leading others astray. Our children are the most precious things in our lives. We are not stupid, and we have made the most informed decisions that we can. We are aware of the risks and the disadvantages of straying from established practices. We have decided to take that risk and are sharing our experiences on this forum.

Period.

Stop abusing us verbally for doing that.

[structural75]

Cheryl,

There must be some type of misunderstanding here. ???? I have never condemned any of you for using the spinecor brace... I happen to personally believe it is LONG OVERDUE that a flexible dynamic brace be used. I wouldn't exactly call that approach "cutting edge", although it is certainly a step in the right direction. "Cutting edge" stuff is precisely what your friends are condemning ME for! In no way am I suggesting you revert back to "traditional' more widely accepted approaches.?? I've only been bringing up objective points about the braces effects and I personally feel they deserve a little attention rather than get dismissed as having "no consequence". That's not being a jerk or abusive, that's being genuinely concerned. I'm sorry you see it differently. I happen to think you folks are actually taking a quite traditional route... excuse me for saying that but it's not a bad thing. The use of bracing, any kind, has been going on for a long time... when are we going to add something more to that approach to enhance its effectiveness? Strapping on a brace and leaving it at that just seems very traditional and passive to me when there are in fact complimentary methods to make it potentially more effective and work far more specifically on the curvature. I respect your decision to do whatever you like... but you folks don't like me offering my input about those 'additional' methods... who's on who's case for being less than conventional?

And I'm sorry that you feel I have NO RIGHT to defend myself against personal insults, name calling, and degradation of my profession (which is NOT chiropractics)! Maybe you should be pleading to Celia to "stop" with the childish non-sense (ie - ignorama???).

but you persist in attacking others
I don't know why you keep telling me to stop the "abuse", have you read the last few posts I've put up? I actually deleted my unnecessary arguments late this afternoon. I apologized for playing my role and that was that. Then Celia comes on here and continues with her sarcastic insults (You just don't see them anymore because she erased them after I questioned her on it). So WHAT ARE YOU TALKING ABOUT "ABUSIVE" TO ME FOR? And persistence???? Who's persisting with abusive remarks?
You are entitled to your opinion, but your verbal abuse of these parents is out of line.As is yours and others toward me...way out of line... I'm sorry but that's the truth. Just because you folks don't understand what I do and can't find a bunch of 'scientific studies' on the matter doesn't permit you to slander and abuse me! That is crossing the line!!! And if you cross it, I will defend it - plain and simple.

Cheryl, I understand what you're saying, but you haven't once considered the role others have played in this. Do you just skip over their posts containing insults and abuse, only reading my REPLY to them? I'd be more than happy to list ALL of the NON-ABUSIVE posts I've put up on this forum... followed by your friends' "abusive" and unsolicited negativity. Any time they see my name, there right there on my tail with some sly negative remark trying to denounce my credibility.

Let's heed the advice of a few other forum members from earlier today and call it QUITS! You're beginning to get passive-aggressive with these repeated pleas.

[structural75]

Cheryl,

One more thing for the record.. You don't have to spend hours 'researching' my posts. Just start from the very beginning and you'll see clearly that my intentions coming on to this forum were wholeheartedly good. You'll then see how one of your 'friends' quickly circled in to set up for the attack. My presence wasn't welcomed by your ring leaders from the start... even though I was just conversing with other people quite pleasantly. The top dogs giving 'advice' here felt threatened before I ever corresponded with them. Please don't try to make me out to be the bad guy... that's just wrong.

[cherylplinder]

Structural,
I am not going to get into an argument with you.

You can call my request whatever you want, but the forum members that you repeatedly harass have been posting on this forum for a long time because they have needed support for a long time. I can't recall anyone that has the record you have. Your posts speak for themselves and so do the years of constructive posts that the others have.

I don't think anything will make you stop, but you should be ashamed for continuing to monoplize this forum with your tirades.

[structural75]

Cheryl,

I'm sorry you see it that way... but longevity on this or any forum doesn't give one the right to repeatedly harass me every time I try to give someone support or advice on a topic that I'm familiar with. The "harassment" that you're accusing me of is a 'response/defense' to their initial harassment... I'm sure that if you posted suggestions to someone here and were unjustly discredited for it you'd be defensive as well.

Over the years those people you're referring to have driven other forum members away with their harassing, accusative and dismissive comments. I recall one woman who came on here to share her success with a chiropractor and your 'friend' followed up her post with a very negative remark about her chosen approach. I don't consider that supportive or respectful.... and that woman didn't either and was never to be heard from again.... and that's unfortunate and unfair.

I'm sorry, but I won't submit to a dictatorship of opinion.

[Celia Vogel]

...Over the years those people you're referring to have driven other forum members away with their harassing, accusative and dismissive comments. I recall one woman who came on here to share her success with a chiropractor and your 'friend' followed up her post with a very negative remark about her chosen approach. I don't consider that supportive or respectful.... and that woman didn't either and was never to be heard from again.... and that's unfortunate and unfair.


Oh now I remember! :) Are you referring to the thread entitled "Chiropractic Hope, Had to Share" where the poster Denverback Chick was planning to see Dr. Woggon at the Clear Institute and this doctor told her that he would reverse her structural scoliosis in six short weeks???? I never realized I was such a threat to scam artists preying on innocent victims. I guess I should be flattered by all the attention. :o


*

[zuma]

Dudes, dudes, dudes, lets show some love instead of hate, lets see good instead of bad, be positive instead of negative and above lets start offering support to one another after all is that not why we all signed up. No ones right no ones wrong everyone has an opinion, everyones passionate lets use that passion for the good of one other, lets channel those energies positively and we beat this sh*ty condition we all suffer from

peace

Z

[structural75]

Oh now I remember!
No Celia, you don't... that wasn't the one. Must we, or you rather, continue the antagonizing?

[structural75]

Celia,

Which one is it then ?

Listen man, if you have something to say to me send me a private message and we'll hash out our disagreements in private!!!! I am FED UP with you!!! PERIOD! F%#! OFF!You can't be serious... using that language on a public forum with children present.?

... I apologized for my bickering several posts back and you and cheryl keep coming at me with insults, sarcasm, antagonizing comments and a plea to stop. I HAVE STOPPED! You two are the ones dragging it out.

And what makes you think that the "friend" I was referring to was you? It wasn't you I was referring to but I didn't feel a need to point fingers at a specific individual... . Unlike you, I'm not looking to put people down while I'm having a conversation with someone else.

Report ME for harassment... ? Have you read the last several posts?

CAN WE PLEASE TAKE THE ADVICE OF OTHERS AND MOVE ONWARD?

[Celia Vogel]

That's it!!!! I'm reporting you!

[structural75]

Thank you! I would appreciate it if this was brought to the attention of Joe O'Brien once and for all.

[Celia Vogel]

Thank you! I would appreciate it if this was brought to the attention of Joe O'Brien once and for all.


That's exactly what I did!

[structural75]

Thank you, again.. I dropped him a note as well.

[cherylplinder]

Chiros charge about 3500 dollars for an assessment for these fringe treatments. I am specifically addressing vestibular rehab for scoliosis. Without any published scientific evidence to support the claims that vestibular rehabilitation can cure or do anything to correct a scoliotic curve, the EXORBITANT FEES are unethical.
Desperate parents are often willing to do anything for correction.

I am not attacking anyone with this statement, but the other side of the coin should be presented each time.

[braceguy76]

Braceguy,

1. I private messaged you with those questions/comments to keep this junk off the public forum. Why are you bringing it back here? Other folks have suggested we settle our disputes outside of this arena and out of respect for them I was trying to do just that. How do you know it wasn't the patient herself?

2. I don't have an agenda... If you were to read the posts that I have put up on this forum (aside from all of the defensive arguing) you can see that I'm not here to promote myself or chiropractics. I have been offering advice in the way of pain management and ways to enhance the effectiveness of bracing, of any kind. I don't have anything to sell... it just upsets me that people are not given the opportunity to hear about adjunct methods that may be of beneficial use to them. You came onto this forum with some very useful input on the topic of bracing and growth factors etc.... but when you began trashing an entire profession and other methods being utilized by those professionals you crossed a line. Dismissing exercise programs without giving any clinical reason why that wouldn't be helpful is inappropriate. To just say that something is non-sense doesn't justify its dismissal.

It seems as though prominent voices on this forum have chosen to eliminate the possibility that any non-surgical treatment besides bracing is irrelevant to scoliosis and I find that completely absurd. I don't have all the answers.... but I'm interested in asking reasonable questions. Neurological components to this condition are a sound basis for 'reasonable' question and inquiry. And it has been shown in studies that vestibulo-ocular asymmetries exist in patients prior to the onset of an ideopathic scoliosis... Which would give adequate reason to treat these individuals with vestibular rehabilitation. You may think it's a bunch of non-sense and choose to degrade it, but I don't see you, or anyone else, offering additional treatment options beyond bracing (which is not always successful for every person). So for those who aren't getting the results that some folks here are getting with the 'miracle' brace, what can you say to them? Sorry, hope is lost? These other approaches may prove useful...

Braceguy, I don't have an agenda other than to keep the voices of the minority heard and try to support the "fringe" treatment options that are often too quickly dismissed because they are not mainstream or well understood. Think what you like about me, but am I really the only person here to find your negative rant about this stuff and subsequent removal of it a little odd as well? One minute you're threatening another forum member with violence and the next you're blessing everyone with the lords name. It just doesn't add up to me... then again, it doesn't have to...

certainly someone with your intelligence understands Sarcasim,Like I could really snap a spine thru the computer. Like I knew at the time who sportsdoc was or where to find him to perptrate this Violence. it was an attempt at levity(I know you don't know that concept)As I have said before I was not trashing an entire profession or trashing pine cor.You simply latch on to what suits you then try and start an arguement. You hav to remember the emails,Epost etc. Can be taken sometimes outside the spirit in which they were offeredI posted your Private message here to show I have nothing to hide. So your otherside of the coin as you call it can be see.You were the guy that wants the whole truth are you not?You on the other hand seem to have at least an association of sorts with my former employer or you would not be privy to the info of my Divorce.
As for blessing or wishing other well I'd thought that would be ok with you, Do you have something against god? I bet you don't mind "In God we trust" LOL ( sarcastic remark)

[christine2]

Somebody

Please move this bickering junk out so us parents may converse and so the new parents to the forum can get some help!!!! This stuff is damaging this wonderful forum!!

[structural75]

Maybe someone here who was/is actually a patient of Dr. D's can give us accurate insight into the fee schedule for this type of testing... I thought I read a post by someone once saying that it was between $700 - $1200.??? What do MDs charge for vestibular testing? And I'd agree, excessive fees are shameful.

Cheryl I respect your willingness to try a "fringe" treatment. I think that those who interpret them to be supposed "cures" are misrepresenting what they are meant to do. Braces don't "cure" scoliosis either... they force the curves back, plain and simple... but do very little, if anything at all, to actually "cure" the initial cause. Cheryl, I'm certainly not saying that to pick on your choice of words, I just keep hearing that phrase from folks as if everything that's presented as a form of 'treatment' is supposed to be the "cure"... when maybe we should look at all of these things, bracing and surgery included, as ways to slow, stop or reverse its progression, part of a comprehensive process. But until we have a better understanding of its variety of causes I don't think that anything can be considered a "cure".

[MATJESNIC]

Structural,

What I resented, more than the fees for the test (I know I paid at least $1,500 because even though she fell within normal range, they wanted to test that the exercises were improving any weakness, so there was re-testing) was that getting the Spinecor brace was packaged in with the testing. Nobody asked if we wanted the testing. It was a package deal. And now I know that it wasn't right. It should have been presented as an option.

[structural75]

Melissa,
I'm very sorry to hear that. I agree that you should have had the option. I don't support the idea of "package" deals or offers... that sounds like something that belongs in retail, not medicine.

Thank you for sharing that info with me. I don't support that kind of practice and I appreciate your frank opinion on it.

Structural

p.s. - Did the second run of test show any positive effect for your daughter?

[MATJESNIC]

Structural,

I only know what they told me. She didn't have anything outside of normal to begin with. But the areas that were on the weaker side improved after exercise. This was based on their testing. They could have told me anything and I would have just taken their word. What do I know. The big question is how did any of that change her curves in any way. Probably not at all. Maybe if you are someone who has some real deficits, but Nicole didn't.

I was vulnerable. I didn't want the hard brace. I felt good about Spinecor because it was better than doing nothing. It never occured to me to go to Montreal. Going to New York made the most sense. So whatever the price was and whatever the package was, we just went for it.

I have always said that Dr. D. was nothing but kind and patient with my daughter. He spent a very long time with us at all of our appts. We were never rushed. But it was expensive.

[structural75]

To all,

Braceguy and I have taken our discussion to the private sector and our conversation has moved us forward. I do want to offer my apologies to him for some of the remarks I made about his personal life and accusations about him based on here-say. I had no business using that information to question his credibility and bringing someones personal life matters into this was out of line....

My frustrations with other folks has gotten the best of me in this situation. I don't condone the practices he was describing by anyone and I hope that nobody here finds themselves a victim of it in the future. I do hope that people will keep their minds open to more comprehensive treatment methods despite a few bad apples out in the world. There is much for you all to gain by some of the lesser known treatment methods... And while no single method will be right for all, let common sense be your guide.

Again, my apologies to braceguy for any hurtful or accusatory remarks.

Kind Regards,
structural

[braceguy76]

Thank you Structural,

I agree that there is no place for insults here.But at the same time these people, who are here searching for answers and alternatives for their children nedd to know that there are "sharks in the water".
I think you can agree considering the sourse of the information that everybody here needs to really research not only the method of tratment chosen but the practittioner as well.
Thanks again Structural

[structural75]

I absolutely agree! You're welcome, it was the least I can do.

[braceguy76]

I intend to post here serval diferent brace protocols and studies.I am doing this so we can get back to meaningful discussion of each option.Also to impowe you as parents to know where the actual protocols stop and the practitioners preference takes over.This is only to let you know where you can say to you practitioner wether or not you'd like to try any thing outside these protocols.
I hope this will help and if you feel this will clutter the board please let me know and I will not pot these here.After all this is YOUR forum and as a Practitioner I am here only to provide information.
I will be awaiting your responses before posting anything

[braceguy76]

The SpineCor system is a flexible brace that is principally prescribed for Idiopathic Scoliosis patients with a Cobb angle
between 15° and 50° and Risser sign 0 to 2. The brace is fitted on the patient in accordance to a sub-classfication of the
traditional SRS definition of curve types. The SpineCor Assistant Software guides the therapist through the fitting process.
The brace is prescribed to be worn by the patients 20 out of 24 hours per day until they have reached maturity, with
radiological evaluations performed prior to and immediately following the fitting of the brace, and every 4 to 6 months
afterwards. To accommodate for the growth of the patient, components to the brace are expected to be changed every
1.5 to 2 years. A patient manual is provided that guides the patient in properly wearing the brace, as well as maintenance.
The orthotist is suggested to follow a 2day training program to learn the the proper fitting of the SpineCor brace.
INDICATIONS
The SpineCor System was designed, developed, and tested for the treatment of idiopathic scoliosis only.
CONCEPT
The new therapeutic approach is based on a new concept upon the etiology and pathogenesis of idiopathic scoliosis. It is
a pathology of the neuro-musculoskeletal system in growth and maturation. The cause is genetic, and the pathogenesis
involves a three-dimensional deformation of the spine, postural disorganization, unsynchronized growth and particular
movement pattern of the body.
DIAGNOSIS
In order to obtain an accurate diagnosis, that would specify a particular class and subclass for the patient, the evaluation
combines a clinical exam, radiological and postural evaluation.
TREATMENT
A specific corrective movement is performed, and the brace is applied according to the SpineCor Assistant Software
instructions. The moderate tension in the elastic bands allows the repetition and amplification of the corrective movement
as the child undertakes everyday activities. This results in a progressive curve reduction. The brace is worn 20 hours out
of 24. The four hours out of the brace must not be taken at once, usually the patient divides them into two breaks: morning
and evening. Sports are to be encouraged and done while wearing the brace. To obtain a neuro-muscular integration of
the new strategy of movement, the average duration of the treatment is 18 months. Because of the progressive changes,
absence of external support during the treatment, and intact muscles, there is no loss of correction after the brace
discontinuation. Physical therapy is NOT a necessity in the SpineCor program (SpineCor itself may be considered a
physiotherapy 20 hours out of 24). However, when the patient is willing to undergo a physio program, or a faster
consolidation of the reduction of the curve is desired, the Global Postural Reeducation (GPR) program is considered. For
the patients at the beginning of the treatment, the physio is carried out with the brace on; for the patients in the weaning
period the exercises are done without the brace.
PROGNOSIS
To really change the natural progression of idiopathic scoliosis, it is essential to reduce the curvature enough to eliminate
the negative impact of abnormal biomechanics and growth. Therefore, it is possible to achieve a complete or almost
complete correction of moderate curves, if the treatment is started before the main growth spurt (before Risser 1 and
menarche). In curves over 30 degrees of Cobb angle, or when the treatment started during or after the main growth spurt,
the goal of the treatment is a stabilization of the deformity. The therapeutic success is possible in more than 80% of
cases. The reference reducibility calculated as early as at 3-4 months of treatment, is useful in defining the prognosis.
However, for individual prognosis, the impact of the severity of the bone deformation, pattern of the growth and
compliance must be considered.
This come directly from the manual.If you have any type of scoliosis other than idiopathic this brace is contrindicated for you.Also were therapy is advised by you have the option to opt out.Notice also that Vestibular testing and rehab are not part of this treatment plan.Anything other than what you see here should be your option and your provider should tell you in advance that this is not part of the standard treatment.what this says is simply if the brace is applied correctly to the right canidates with proper follow up the results should be as there study shows.I will also post there study.So don't feel obligated to follow a plan your not comfortable with.this information was found online in case anyone cares to know.

[braceguy76]

THE SCOLIOSIS RESEARCH SOCIETY BRACE MANNUAL
INTRODUCTION
Dale E. Rowe, M.D.
Kalamazoo, Michigan
Idiopathic scoliosis has been divided into Infantile (IIS), Juvenile (JIS), and
Adolescent (AIS) forms 67. Recent researches into the early onset types of scoliosis (IIS
and JIS) have pointed out that about twenty percent of these patients have neuro-axis
anomalies which may contribute to the development of a curved spine 19. These types of
curves in all patients under ten years of age may not actually be “idiopathic” in nature.
For this reason, the natural history of these patients is different from the behavior of late
onset scoliosis (AIS)8. Long term outcome studies of untreated patients with AIS have
demonstrated that these curves will worsen when they are 50 degrees and more at
maturity 56. Thoracic curves more than 80 degrees are associated with shortness of breath
and risks of cor pulmonale and death. Patients with this degree of scoliosis will have
more concern about their cosmetic appearance. Many patients with AIS have more pain
but do not exhibit more disability than the general population. Depression does not seem
to be more of a problem than in the general population 79. Patients with curves less than
45 degrees have lives with quality and length equal to those of control subjects. Both
non-operative and operative treatments, therefore, aim toward keeping patients’ curves
under the important threshold of 50 degrees at maturity.
Non-operative treatment of scoliosis has been depicted as early as Hippocrates, in
art and literature, using traction and lateral localizer straps. Modern bracing is said to
have started with Blount and Schmidt in 1946 5, when they started using a brace
developed for post-operative immobilization for non-operative treatment. This
"Milwaukee Brace" used metal uprights to give a distraction effect to a sub-mandibular
molded pad. Lateral straps and pads were placed over the apex of sclerotic curves to add
lateral bending moments to the treatment, along with distraction. The brace was intended
to stimulate the patient to pull away from the contact points thus using muscle power to
correct the curve. Close observation indicated that those patients treated with the
Milwaukee brace did not progress as often as those untreated. The standard treatment
protocol became full-time wear for the duration of growth for all patients found to have
scoliotic curves from around 20 degrees to 45 degrees. Physicians found that bracing did
not generally change the natural history of scoliosis if the curves were greater than 45
degrees.
Patients apparently followed Dr. Blount’s instructions well, but others found the
constraints of a rigid brace from the chin or throat to the pelvis uncomfortable and
unsightly. Hall and Miller 22,76 developed a more total contact brace that works as a sleeve
the patients and improve compliance. The outcome of the Boston Brace on the scoliosis
progression was the same as the Milwaukee Brace.
Green 18, 33 found that adolescents often did not wear their braces as long during
each day as was prescribed. He suggested that it was possible to have the children wear
their braces part-time and achieve the same control of curve progression. Variations of
the treatment protocols for the Boston Brace were developed. The Charleston Bending
Brace, Providence, and others, which were specifically built for nighttime wear. 6,14,23.
These braces bent patients out of their curves. Other mechanisms of treatment used
electrical stimulation of trunk muscles to bend patient out of the curves 2. They
suggested that a treatment period of nighttime or eight hours was adequate to keep
scoliosis from progressing.
Manipulation and exercise therapies have been tried largely based on theory or
anecdotal experience. There are no studies which prove or refute chiropractic

[braceguy76]

Since adolescent idiopathic scoliosis progresses most often in patients who are
growing and have curves which are above 20 degrees, this is the time to use a brace
modality. Studies have shown that curves greater than 40 degrees are unlikely to respond
to bracing. Treatment protocols may vary

[braceguy76]

AGAIN THIS IS FROMTHE SRS
In 1993 Goldberg reviewed patients in Dublin who did not wear braces 31. She
discovered that their clinic had the same number of surgeries for scoliosis when patients
did not wear braces as they had while the authors were using the brace regimens. About
the same time, series of patients treated with external electrical stimulators seemed to
indicate that these patients had the same progression as might be expected from the
natural history studies indicated 9,20,29,62. To answer these challenges, the Scoliosis
Research Society commissioned a prospective, non-randomized, multi-center study to
evaluate the effect of bracing and electrical stimulation on the natural history ofscoliosis57. Researchers were given freedom to treat patients as they felt appropriate; that
is to say they braced with their favorite brace or treated their patients with observation if
they did not believe that bracing was effective. The overall results indicated that bracing
did keep curves from getting larger compared to no treatment or treatment with lateral
trunk electrical stimulation.
In 1995, the SRS Natural History and Prevalence Committee carried out a metaanalysis
in order to determine from the English literature whether braces did keep
idiopathic scoliosis from progressing 64. The committee also wanted to try to determine
whether part-time bracing had the same effect as full- time bracing. A total of twenty
studies were included in the meta-analysis studying 1,910 patients who had completed
treatment. 1,459 had been braced, while 322 were treated with lateral electric stimulation
(LESS) and 129 were treated by observation only 1-4, 7-13, 18, 20-23, 25, 26, 28, 29, 30, 32, 33-39, 40, 43,
44, 46, 47, 49-54, 57-60, 68-72, 74-78, 79, 80-82.
The untreated patients did not progress (successful treatment) in forty-nine
percent of the cases. Those treated with the LESS were successful thirty nine percent and
braced patients did not progress in ninety-two per cent of the cases. The braced patients
responded favorably significantly more than other forms of treatments reviewed.
The very young patients, especially juveniles, did not respond as well as adolescents and,
of course, more mature patients who had little growth remaining. The reason for this is
not clear from the meta-analysis, however literature since its publication has added
precautions to the treatment of juvenile patients and boys. Karol 40 has shown that boys
only respond in twenty- five percent of the cases treated. Goldberg, et al,32 and Dobbs, et
al,19 have shown that boys with scoliosis have a higher incidence of neuro-axis defects
than the girls with adolescent idiopathic scoliosis. All children under the age of ten have
been found to have an increased incidence of neuro-axis deformities. These findings may
explain why braces are less effective in girls that are in the adolescent period.
Especially interesting, was the finding that there seemed to be a “dose response
curve” related to the amount of time the braces were worn each day. While there was a
trend that the patients prescribed part-time brace wear preformed better than observation,
full-time bracing was significantly better (p=0.001). Furthermore, the Charleston brace
which is worn eight hours was not statistically different then the TLSO’s worn for twelve
hours, and both were not as successful as those braces worn full-time. The TLSO type of
brace was not statistically different from the Milwaukee brace if both were worn fulltime.
These data were based on the length of time braces were prescribed to be worn.
No timed data was available to confirm that patients were compliant with their
prescriptions.
Literature since the meta-analysis has confirmed these findings.6,27,48,73,81. Katz
and Durrani42 have also shown that a dose response curve exists for the length of time
braces are worn daily and the control of curve progression. They did demonstrate that
this time effect was more important for curves greater than 35 degrees. This makes
treatment of smaller curves with part-time braces seem possible, further refining the
treatment modalities the physician can offer patients and their families.

[braceguy76]

There are several types of commonly used scoliosis braces:

1. Thoraco-Lumbo-Sacral-Orthosis (TLSO)
The most common form of a TLSO brace is called the “Boston brace”, and it may be referred to as an “underarm” brace. This brace is fitted to the child’s body and custom molded from plastic. It works by applying three-point pressure to the curvature to prevent its progression. (See Figure 1.)

It can be worn under clothing and is typically not noticeable. The TLSO brace is usually worn 23 hours a day, and it can be taken off to swim, play sports or participate in gym class during the day.

This type of brace is usually prescribed for curves in the lumbar or thoraco-lumbar part of the spine

2. Cervico-Thoraco-Lumbo-Sacral-Orthosis (known as a Milwaukee brace)
The Milwaukee brace is similar to the TLSO described above, but also includes a neck ring held in place by vertical bars attached to the body of the brace.

It is usually worn 23 hours a day, and can be taken off to swim, play sports or participate in gym class during the day.

This type of brace is often prescribed for curves in the thoracic spine.

3. Charleston Bending Brace
This type of brace is also called a “nighttime” brace because it is only worn while sleeping. A Charleston back brace is molded to the patient while they are bent to the side, and thus applies more pressure and bends the child against the curve. This pressure improves the corrective action of the brace. (See Figure 2, 3)

This type of brace is worn only at night while the child is asleep. Patients can go to school and participate in sports normally without their friends even knowing they have scoliosis and wear a brace, avoiding any potential negative stigma.

Many studies have shown that the Charleston Night time brace is as effective as the above-described 23-hour-a-day brace wear.

Curves must be in the 20 to 40 degree range and the apex of the curve needs to be below the level of the shoulder blade for the Charleston brace to be effective.

Case Example
As an example of bracing treatment that was effective for a young patient, please see the attached figures.

The girl in the figures is 12 years old and athletically active in lacrosse, soccer, and basketball throughout the school year. She had a progressive 35-degree scoliosis King Type II curvature, apex toward the right side as measured from T5 to T12 (see Figure 4).

The patient was pre-menarchal and therefore had a lot of spinal growth left. She was an ideal candidate for the Charleston Nighttime brace (see Figure 5) due to the position and degree of the curve in her spine and because the brace would not interfere with her athletic activities. (Note: the TLSO brace can also be removed during the day for athletic activities.)

An X-ray should always be done after custom-making the brace. For this patient, while in the brace the curvature was reduced down to just 5 degrees, proving that it was a worthwhile treatment (see Figure 6).

As a general rule, the Charleston brace will be worn every night for approximately 8 hours until the patient is one year after onset of menarche. The goal of wearing the brace is to prevent the scoliosis from progressing to over 40 degrees and prevent the need for surgery.
Currently, the spine medical community advocates bracing as the only non-surgical treatment for idiopathic scoliosis. The objective of bracing treatment is to prevent the curve from progressing as the child grows, and studies have shown bracing is effective in stopping the progression of the majority of adolescent scoliotic curves.

There are a number of bracing options, and the physician will recommend a particular back brace and bracing schedule based on factors such as the location of the child’s curve and degree of curvature. Compliance with wearing the back brace as prescribed is clearly vital to the success of bracing treatment.

Unfortunately, even with appropriate bracing, some spinal curves will continue to progress. Early on it is very difficult to tell which curves will be aggressive and continue to progress, and which curves will not continue to progress.

If the curve continues to progress to 40 - 45 degrees or more, then a spinal fusion surgery will usually be recommended. However, even if surgery eventually becomes necessary, the back brace can still be beneficial by helping delay the progression of the curvature and allowing the child to grow more before having a spinal fusion (which stops the growth of the spine).

By: Paul C. McAfee, MD

[braceguy76]

The previous post do not include the spine-cor brace or thr triac-c brace by boston brace.I've posted the info on spine-cor and am looking for current info on the triac.
Some key points are that some curves will progress no matter what bracing method is used.
It is called idiopathic scoliosis because we really don't ave all the answers on etiology or really treatment for that matter.Each individual should be treated with the best method that suits there curve pattern.
Wearing schedule is very important!!!!!Every study is based on compliant patients.So your best results are going to be for those patients that follow protocols and wearing schedules.
This is all not to say that vitamins, e-stim or vestibular rehab cause harm but do they help?
I have read recent studies that indicate that the best way to icrease Vitamin uptake is to get it in its natural form not a pill. the last study I saw implied that the pill form is often passed though the digestive system without fully being asborbed.
E-tim has limited studies that suggest it could be a helpful adjunct treatment.
Vestibular testing can be used as a predicter of Scoliosis.Unfortunaty when many practitioners suggested it we allready have a Diagnosis of Scoliosis.As far as rehalb, I have yet to read a study that suggest he vestibular rehab in and of itself improves Cobb angles. not to say that it can't help, but we will not know until relevant studies are published.
As allways if anybody knows of any studies please let me know!

[braceguy76]

is this info helpful to anyone?Should Iceast in posting this info??

[gerbo]

If I am totally honest; just "cold-posting" of this kind of overview will only be useful to a small minority of parents. Many parents coming to this forum will have spend many hours researching the issues concerning them on the internet and will have come across this type of info. Also, once posted, specific info gets soon moved nbackwards by newer posts and the info supplied will be less readily avail;able.

As a rule it is more useful to respond to specific points or questions raised.

Whilst we are on the subject of bracing, and i woulkd be interested in your opinion, I wonder whether we are seeing such a relatively poor results from hardbracing is because not enough attempts are made to improve the quality of bracing. what I mean by that is that longstanding methods and protocols are being used and little attempts seem to be made to try to understand what is required for a brace to work, and the little knowledge what is available is not consistently applied. Specifically, besides length of wearing, it is known that relative succes is very much dependent on initial correction provided by the brace (which makes sense, the straighter the spine in brace, the less the assymmetrical forces on the growth plates and more chance for some correction) Still, many places i know of (in the UK) will not xray after fitting and therefor will not know whether the "magicc 50%" is being achieved, and i have never heard of anybody having to come back for a further fitting "to see whether a bit more correction can be achieved".

Pure anecdotically, on german forum i looked at, patients have raved about a orthotist , Rahmouni is his name, who makes a variation of the continental cheneau aiming for and achieving 100% correction or even overcorrection in brace. Inevitably (if true) his endresults are superior to anything else. (however there is no published study) It makes sense though, if you brace, you need to get the most out of it by trying to achieve maximum correction. i am not convinced aiming to achieve that is common practice.