spinecor

[mariaf]

Hi Jill,

I get what you are saying. And yes, that's one thing I hate about these forums, how the written word can sometimes be misinterpreted. I worried about that in my earlier post to you because I was simply speculating (based on various things I have learned and had heard) about how Dr. Betz arrived at his views regarding Spinecor...sort of thinking out loud.

Each of us has different experiences - as you and MJB have had with Dr. Rivard. I agree that we could chalk it up to him having a bad day (everyone does) except that, as you say, MJB stated that this has happened repeatedly so I honestly don't know how to explain the differences in your experiences.

As for how much experience the doctors in Dr. Betz's network have had with Spinecor, I guess if by "experience" we are talking about kids they've prescribed it for, then probably none because they don't believe it is effective so they don't use it.

I know that in the case of Shriners, I personally know a few kids who ended up having spinal fusion there after the Spinecor didn't hold their curves. Now, of course, this could happen with any brace, but maybe Dr. Betz is forming his opinion, in part at least, based on patients who have come to him after using Spinecor, I don't know.

I, too, am wondering how things went today for MJB.

[mariaf]

Hi Nina,

I get what you are saying, and I honestly don't know if there are some curves that the Spinecor brace can effectively treat, but I can't help but wonder about this - since insurance and cost issues are not a factor at Shriners Hospitals, and they DO operate outside of insurance companies every day, how come none of them prescribe Spinecor? (To my knowledge, none of the 19 Shriners orthopedic hospitals do so).

I'm not saying that makes it a bad brace, but I can't help but wonder about it. I know in the case of the Philadelphia Shriners Hospital, the chief of staff (Dr. Betz) told a patient recently that he did not prescribe it because he did not believe it was effective, or saw no evidence that it was effective (something along those lines).

I guess my feeling, after getting to know Dr. Betz pretty well over the past 6+ years, is that if he felt there was a reasonably comfortable brace that could effectively treat JIS patients, he'd be the first one in line to get trained in fitting it.

I have not read all the literature on Spinecor, but was under the impression (from reading some posts here and elsewhere) that the positive data to date has all come from the inventor of the brace. Again, this does not necessarily mean it's not accurate, but perhaps the orthopedic community is waiting to see some independent data of a positive nature? I don't know.

Just my two cents

[Pooka1]

I guess my feeling, after getting to know Dr. Betz pretty well over the past 6+ years, is that if he felt there was a reasonably comfortable brace that could effectively treat JIS patients, he'd be the first one in line to get trained in fitting it.

Betz will have to fight all the other pediatric orthopedic surgeons for the first place in line.

Folks should realize that when their argument only works by assuming surgeons are nefarious or incompetent or uncaring, the argument is wrong FULL STOP. There is a HUGE shoot the messenger mentality out there towards surgeons who are only trying to help. You can't get blood from a stone but many folks will choose wishful thinking anyway.

I have not read all the literature on Spinecor, but was under the impression (from reading some posts here and elsewhere) that the positive data to date has all come from the inventor of the brace. Again, this does not necessarily mean it's not accurate, but perhaps the orthopedic community is waiting to see some independent data of a positive nature? I don't know.

The independent studies have shown no evidence of efficacy. At least one of these studies was done by a champion of conservative approaches. Another study was done by a group with no dog in the fight. That will turn heads of honest people which includes pediatric orthopedic surgeons.

[Pooka1]

Time has spoken and the vast majority of orthopedic surgeons have spoken with their feet (away from Spinecor) due it seems likely to lack of demonstrated efficacy. I'm guessing many tried it themselves and saw it fail first hand in the AIS crowd. There is a reason chiros, untrained in scoliosis by virtue of NOT being board certified pediatric orthopedic surgeons, are practically the only people fitting it in the US.

If it was effective or might be effective, we wouldn't see that (only chiro fitting the brace) because orthopedic surgeons C-A-R-E about their patients and seek out the best, most comfortable alternatives there are. When there aren't any they H-O-N-E-S-T-L-Y state that. You don't always get that from alternative treatment purveyors.

Pediatric orthopedic surgeons are the good guys in this rodeo; Any allusion otherwise seems uninformed.

[mariaf]

I don't discount the SpineCor brace simply because most of the studies are coming from the orthopedic surgeons who invented it, since most things start out this way--(so far all? or most of the VBS studies are coming from Betz et al--that doesn't mean they are not valid, but he has done the most of these surgeries so he has the numbers of patients to do a study.)

Fair enough, Nina

In fact, that's why I said that it doesn't "necessarily" make the studies inaccurate just because they came from the inventor.

The only difference between the VBS studies and the claims made by Spinecor (or the folks at CLEAR, or Schroth practitioners, etc.) is that money is changing hands in all cases except for VBS which is performed at Shriners at no charge.

Again, I'm NOT saying that because someone charges for something, that it must be a sham, but it will make folks tend to question motives more. Whereas, with VBS, nobody is making a penny - in fact, Shriners is in dire financial straits because of these and other surgeries they perform which are so expensive.

These are just my random, candid thoughts - I'm glad we can share our (perhaps slightly different) opinions in an honest, friendly fashion!

I guess I just worry that there may be someone out there looking to take advantage of parents desperate to avoid surgery. I'm not accusing anyone in particualr of this - I guess maybe I'm just a cynical New Yorker

[mamamax]

I'm just going to add some thoughts here, as to why I think most orthopedists don't recommend the SpineCor brace, as well as the Cheneau brace.

One is lack of experience. If you don't have much experience with a brace, you will not use it, even if there are reports of success elsewhere. But more importantly, both of these braces need to be fitted by someone very experienced with fitting them, since they are also providing derotation. If an orthopedist does not have the time (and because insurance companies are a factor in shorter office visits by decreased reimbursement), he may not have the time, nor is willing to pay the expenses of training to fit the SpineCor brace and investing in all of the brace equipment, (I looked into it--you have to purchase a certain number of braces and parts along with the training; also, if an insurance company refuses to pay for the brace, and you are an in-network physician, you cannot charge on your own for the brace, so you would be out a significant amount of money.) So it's not an attractive option unless you are willing to invest a great deal of time and money, and possibly operate completely outside of the insurance world and not be a participating provider, which would be financial suicide for a surgeon.

So the orthopedist uses an orthotist. But an orthotist may not want to invest in this brace, unless he's sure an orthopedist is going to prescribe it! So he may not fit very many, because the orthopedist is going to continue to use braces they know, that don't need some level of expertise, and aren't going to possibly cost the patient too much money out-of-pocket.

I am not in any way advocating for the SpineCor brace or the Cheneau brace. It just makes a lot of sense to me why they are not used routinely. One advantage to getting the Rigo-Cheneau brace, however, is that it can be fitted with a prescription for a TSLO brace--the orthopedist may be thinking Boston brace, but if he writes for a TSLO brace, you can go to one of two or three orthotists in this country who are experienced in fitting this brace.

We researched VBS as an alternative to bracing, in hopes of avoiding further surgery later on. My own very experienced spine surgeon said nothing about it, despite the positive literature published about it. Why did he not offer it? Because he doesn't do it! He didn't even mention it as an alternative. I'm not saying that he purposefully didn't bring it up, but perhaps it is not even in his sphere of thought, and perhaps he did not want to lose us as potential surgical customers down the road.

All food for thought.

These are good thoughts and yes, much food for thought. If I were a treatment provider with a busy practice - certainly, it would border on unethical for me to recommend a treatment with which I have no first hand experience, or one that had no "evidence" of success in the form of tons of literature and long term studies. If I wanted to gain first hand experience, this would take away from my current practice - or - I would have to go on a working sabbatical.

Both the Spinecor and Cheneau braces have shown great promise in experienced hands. Experience the operative word. Two experienced orthopedic surgeons come to mind, one of them an SRS surgeon; those that have trained under them and continue to consult with them, also benefit from their experience. Cheneau in the hands of Rahmoundi has gained much interest and led to some promising results in this country. The future vision of VBS may find surgical methods that lead to correction along with maintaining flexibility of the spine (see the upcoming SOSORT presentations). The result of any treatment - surgical or non surgical, is always going to come down to - experience.

Good comments yours & thanks for the posting .. always looking for food for thought :-)

[avishenderson]

Spine Core Brace!

Hi, my short experience with the Spine Core Brace here in Atikokan, Ontario, Canada is that, it works great. It has benefitted my daughter, Alacia imensely. She hasn't even had it a year yet. Due to the cost and her age at the time she found out she had Scoliosis, 18. She wasn't covered by any funding here in Canada because she was done growing. There is only about 3 provinces that even recognize this brace. Ontario is one of the provinces that don't cover the cost of this brace. A friend along with some others in our community fundraised to cover the cost of the brace and the other expenses that occur from having to go to Montreal, Quebec to see Dr. Loiuse Marcotte; who is a chiropractor. She has since quit her practise to do research and get more information out there about the spine core brace to all other doctors in Canada. It is to help adults deal with their pain, she has found that the brace takes the pain away for adults. This brace corrected from a 20 degree curve to a 12 degree curve as soon as Alacia put it on. Dr. Loiuse has so far nothing but success with this brace, maybe because it was founded in Montreal; she has the experience working with the people who invented it. By the way, my experience here between Doctors and Chiropractors is that the doctors in general don't recognize chiropractors at all; at least here in Canada. Plus for the government to help cover the cost; it depends how bad the degrees of the curvature is. My daughter had only a 20 degree curve and the orthapedic surgeon said it isn't bad enough to do anything for her. He told her she would have to learn to live and deal with it. That is it from me. Avis Henderson

[Pooka1]

By the way, my experience here between Doctors and Chiropractors is that the doctors in general don't recognize chiropractors at all; at least here in Canada.

In the UK, chiropractors aren't allowed to use the "Dr." title and I believe they enforce that on SSo, a scoliosis forum from the UK. We should have a similar rule here to avoid confusion.

If you ask all the parents of patients and patients who now go to a chiropractor to get Spinecor if they would rather have gotten the brace from an experienced orthopedic surgeon, I think we all know what they would say. There is a reason for that and it has to o with training and having a scientific basis for a field which chiro does NOT (referring to subluxations).

To suggest Spinecor is not prescribed by orthopedic surgeons for any reason OTHER than lack of demonstrated efficacy is offensive and tantamount to saying they would rather see kids suffer in a hard brace than put them in a more comfortable and equally (or more) effective brace. Or it is saying they are incompetent. Nefarious or incompetent, take your pick.

[mamamax]

Hi, my short experience with the Spine Core Brace here in Atikokan, Ontario, Canada is that, it works great. It has benefitted my daughter, Alacia imensely. She hasn't even had it a year yet. Due to the cost and her age at the time she found out she had Scoliosis, 18. She wasn't covered by any funding here in Canada because she was done growing. There is only about 3 provinces that even recognize this brace. Ontario is one of the provinces that don't cover the cost of this brace. A friend along with some others in our community fundraised to cover the cost of the brace and the other expenses that occur from having to go to Montreal, Quebec to see Dr. Loiuse Marcotte; who is a chiropractor. She has since quit her practise to do research and get more information out there about the spine core brace to all other doctors in Canada. It is to help adults deal with their pain, she has found that the brace takes the pain away for adults. This brace corrected from a 20 degree curve to a 12 degree curve as soon as Alacia put it on. Dr. Loiuse has so far nothing but success with this brace, maybe because it was founded in Montreal; she has the experience working with the people who invented it. By the way, my experience here between Doctors and Chiropractors is that the doctors in general don't recognize chiropractors at all; at least here in Canada. Plus for the government to help cover the cost; it depends how bad the degrees of the curvature is. My daughter had only a 20 degree curve and the orthapedic surgeon said it isn't bad enough to do anything for her. He told her she would have to learn to live and deal with it. That is it from me. Avis Henderson

Great news Avis, wishing your daughter all the very best! I see your Dr. Louise Marcotte is quite engaged with surgeon/inventors Drs Rivard and Coillard:Scoliosis Journal Articles

[Bigbluefrog]

pre charge to hold apt.

If you schedule an apt. they charge you $150. to hold the apt

[BellasMom]

Uneven hips

Hi all;

I have a concern that I'd like to run by all of you, spinecor-experienced moms and dads

As you can see from my signature, Bella has been in Spinecor close to 1.5 now. She does not have any remarkable results of her curve going down, but at least it seems to be stable

She only has lumbar curve and a big rotation, so from the outside, it's not that visible ... or should I say it was not visible before

Lately, I noticed that her hips became uneven and I am concerned, because I have a bad feeling that it's a brace that does it. When I look at the way her brace is positioned on her, it's resting on her waist, pushing down on one of her hips and when she takes the brace off, that's exactly how she looks like - with one hip lower than the other. Her spine visually looks the same as few months before

I know that the best answer would be from an X-ray and I already scheduled an appointment at Children's, but as you can imagine, they won't see me overnight, it's in a month

Has anyone noticed similar problem with their kids? Should I be concerned?

Thanks a bunch!

[jillw]

Bellas Mom, I don't have any imput...my daughters primary curve is thoracic so i'm guessing her brace is set differently. Why don't you take a high quality picture while you are waiting for xray that shows your concern and email it to the doctor to get feedback in the meantime. I did that once and it was very helpful.

Big Blue Frog, who are you talking about that requires the $150 to hold an appointment? I've never heard of that before (i've heard of people getting billed anyway for appointments they've cancelled within 24 hours or 48 hours or whatever, not the doctors we see, but in doctors that are in other fields of medicine, especially those in large metro areas. But i've never heard of a pre-pay...it goes towards the appointment? i guess its the same concept of bililng someone for a cancelled appointment, but diff. than what I've heard.)

[jillw]

MJB, still thinking of you and wondering how things went... please post when you get a chance.

[BellasMom]

one more question - how much time should a child be out of Spinecor to do an out-of-brace X-ray

I asked when I made an appointment - they said to take it off the night before, but I am sure the lady did not understand that I was talking about different kind of brace, she just gave me a standard answer

[Pooka1]

one more question - how much time should a child be out of Spinecor to do an out-of-brace X-ray

I asked when I made an appointment - they said to take it off the night before, but I am sure the lady did not understand that I was talking about different kind of brace, she just gave me a standard answer

There is no evidence Spinecor is any different with regard to amount of time out of brace that is necessary. The "claims" are different though.

Most people seem to do 24-48 hours IIRC but hopefully folks will state what they did.

My kid wore a Charleston and removed it the night before radiographs but the surgeon said that wasn't necessary with that brace.