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]

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 (http://scoliosisjournal.com/search/results.asp?drpField1=&txtSearch1=Marcotte&drpPhrase1=and&drpField2=[TI]&txtSearch2=&drpPhrase2=and&drpField3=[AU]&txtSearch3=&drpPhrase3=and&drpField4=[TIAB]&txtSearch4=&drpPhrase4=and&drpFromDate=&drpToDate=&drpArticleType=&drpAddedInLast=&drpOrderBy=by+date&drpPerPage=20&drpAbstract=no+abstract&Search.x=0&Search.y=0&Search=Search&strSearchBoxType=niche_advanced_results&Search.x=10&jou_id=10098&jou_abbrev=)

[Bigbluefrog]

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

[BellasMom]

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.

[BellasMom]

Thanks, Sharon

[MJB]

Thank you for all your support... Halle's xray results came back and her curve is now 40 degrees... I am so sad right now... We will be going to The Hospital for Sick Children in Toronto now, so once we get in there she will be out of the Spinecor Brace... I will keep her wearing it until they get us in though.

Thanks again everyone:)

[MJB]

I only did 24 hours out of the brace before her xray but I think it might be 48 hours..

[BellasMom]

I only did 24 hours out of the brace before her xray but I think it might be 48 hours..

Thanks, I also thought at least 24 hours

[MJB]

Well I emailed Dr. Rivard to let him know that I did an out of brace Xray, he seems like he's not happy about that... here is my e-mail to him, his e-mail to me (keep in mind he doesn't speak good english, so he doesn't write it well either) and then my response to him after that...

Good afternoon,


My daughter Halle had an appointment at your office on March 1. We were thrown off with her new xray saying that her curve had now progressed (in brace) to 23 degrees. We felt very strongly about finding out what her true curve is (out of brace) so we took her to our family doctor and he sent her for an xray (24 hours out of brace) and her results came back with her curve now at 40 degrees.



Please let me know if a curve this high is even able to be treated with Spinecor, or if we should be looking into a Rigid brace now, we don't want to wait until it's too late or have it get worse.



Thank you,

Marlowe


He responded basically saying that he wants to talk to us about his view on out of brace xrays before a stable correction has been obtained...


My response....

Hi Dr. Rivard,

I understand that you have a procedure with the out of brace X-rays but I also have a responsibility to make the best choices for my child before it's too late.

When she was first braced she was at 32T out of brace and 8T in brace, going up to 23T in brace was quite discouraging, when I see other mothers on Scoliosis message boards talking about their children in Spinecor always decreasing and some holding at 1 degree or 4 degrees. I haven't seen any others increasing on there, other than 1 girl and she ended up needing surgery because the Spinecor brace wasn't good for her curve.

My daughter has been in her brace for 2 years, when we started we were told that after 2 years she would have an out of brace xray, it's been 2 years and no such thing has happened and it doesn't seem like it will anytime soon. I cannot wait around until she gets worse and gets older and have her spine calcify in a bad position, if she's going to need surgery I want to make sure it's done at the best age.

I understand that you have a certain way that you treat your patients, but I needed to get a second opinion because she is not getting better in the Spinecor, she is getting worse and in order to get that second opinion I needed an out of brace xray for her.

Please let me know if Spinecor works for curves that are 40 degrees and up, because on the Spinecor website it states in almost every paragraph that it's best for curves under 30 degrees and not as successful with curves above that.

I am sorry I went against your professional opinion but as a parent, I had to know what I'm dealing with here, this is my daughters life, my daughters future and it's in my hands, I must make the best choices for her.


Marlowe

[Pooka1]

Your letters are so good. So on point and honest. That is a great example of how to how advocate for your child.

But I am not sure it is fair to post his email to you publicly. Maybe you should just paraphrase and not quote it? It doesn't really say much but still. People have a reasonable expectation that emails will not be posted publicly I think.

Best of luck.

[BellasMom]

It's sad that he is trying to talk you out of doing out-of-brace X-rays - it's really none of his business, it's not like you tell your child to stop wearing the brace

I have a concern with SpineCor at the moment as well and I will be doing out-of-brace X-ray and will discuss it with a regular doctor

My purpose with the SpineCor was to have it long enough to move Bella from JIS to AIS. She'll be 11 soon, which should be considered an AIS case

I hope that everything will be Ok with your child!!!! I really do!

[MJB]

Your letters are so good. So on point and honest. That is a great example of how to how advocate for your child.

But I am not sure it is fair to post his email to you publicly. Maybe you should just paraphrase and not quote it? It doesn't really say much but still. People have a reasonable expectation that emails will not be posted publicly I think.

Best of luck.

You are right... I will change it... he has responded to me and is being very helpful.

[MJB]

he said that he is going to send me a bunch of literature on juvenile scoliosis and he also mentioned that I will not find a rigid brace that will do better than Spinecor (which he has the right to say, that's how he feels as a professional)... he said that the percentage of scoliosis patients requiring surgery is much higher when it starts as juvenile... he said he understands my wanting to get a second opinion...

I sent him a response...

Thank you very much for your response Dr. Rivard. We need as much information as possible and would appreciate anything you can provide us with. We would prefer not to put her in a rigid brace because she will be very uncomfortable and she will develop muscle atrophy.

Anything that you can send us to help us make the best possible decision for her would be very greatly appreciated. Please do send us that information. We are very happy with her treatment that she has been given but very scared that the outcome may not be what we had hoped for. If there is still hope for her in the Spinecor Brace then we would really like to continue, right now we are just very scared and don't know which route to take.

Thank you,

Marlowe

[leahdragonfly]

My purpose with the SpineCor was to have it long enough to move Bella from JIS to AIS. She'll be 11 soon, which should be considered an AIS case



Hi MJB,

I'm really sorry to hear that your daughter's curve has increased so much. I certainly understand your heartbreak and frustration at this point, and you are doing a great job advocating for your daughter.

BellasMom,

I just wanted to point out, your daughter will always be considered JIS--she does not become an AIS patient past a certain age. The classifications of JIS or AIS are made based on age at onset.

Good luck, and please do let us know how things are going.

[BellasMom]

Hi Gayle;

I think you are mixing me up with MJB

I don't know Bella's out-of-brace measurements yet, I just noticed something that I'd like to get checked-out

By moving from JIS to AIS I meant that different treatments are appropriate at different ages with the same measurements

If by some miracle SpineCor held Bella's curve in place, then with the same measurements, but being 1.5 older, different course of treatment could be offered by her doctor

Now, all that's left is for miracle to occur and to show us the same L23 as in Nov, 08

[mariaf]

It's sad that he is trying to talk you out of doing out-of-brace X-rays - it's really none of his business..

I can't improve on that line, Bellas Mom - it's perfect!

MJB - I'm sorry to hear what you are going through and the tough decisions you are facing. My heart goes out to you.

I don't know how Dr. Rivard can say, with certainty, that you won't find a rigid brace that will do better than Spinecor. I'm not saying you will or you won't, but he can't know that with any certainty.

Have you gotten other opinions regarding your daughter's case? I know you went for the OOB x-ray, but have you seen a pediatric orthopedic specialist, not necessarily regarding Spinecor, but to assess the situation for you?

My honest opinion is that you need to ask someone OTHER than Dr. Rivard if Spinecor is likely to help a 40 degree curve in a child your daughter's age.

I hope you don't mind my candor - I really do hope you find the best treatment for your daughter and I know that you will. Just keep following your instincts :)

[MJB]

I can't improve on that line, Bellas Mom - it's perfect!

MJB - I'm sorry to hear what you are going through and the tough decisions you are facing. My heart goes out to you.

I don't know how Dr. Rivard can say, with certainty, that you won't find a rigid brace that will do better than Spinecor. I'm not saying you will or you won't, but he can't know that with any certainty.

Have you gotten other opinions regarding your daughter's case? I know you went for the OOB x-ray, but have you seen a pediatric orthopedic specialist, not necessarily regarding Spinecor, but to assess the situation for you?

My honest opinion is that you need to ask someone OTHER than Dr. Rivard if Spinecor is likely to help a 40 degree curve in a child your daughter's age.

I hope you don't mind my candor - I really do hope you find the best treatment for your daughter and I know that you will. Just keep following your instincts :)

Thanks for your response! We have been referred to an orthopaedic specialist at one of the best hospitals in Canada, I think that it may take a couple months to get in there because there is always a waiting list but we are going to definitely make sure we get another opinion... this hospital we are going to does not support the Spinecor brace, so we will hear what they have to say in regards to everything. I am anxious to get this appointment.

[MJB]

I am pregnant right now with baby #2... I am so worried that this child will end up getting Scoliosis too... How many of you have had more than one child with Scoliosis?

DH's sister has mild Scoliosis and we think that it must have been hereditery and that's why Halle got it, his sister did not require any bracing though, only a 15 degree curve.

[BellasMom]

Dear Marlowe;

First of - congrats on your pregnancy!!!!!

Second - I really hope that you'll be able to get your DD to the doctor sooner than in 2 months

Keep us posted

[MJB]

Thank you! I am so excited!!! I have wanted another child for soooo long, there will be 10 1/2 years between my children but it's ok, Halle is so thrilled!

I also hope they can get us in soon. I tried calling them today but got the voicemail and the administrators message said she wasn't in today. So I e-mailed them, to find out how long the wait might be. Hopefully they respond quickly.

[MJB]

One more question... does anyone who has a child in the Spinecor Brace notice any marks from the brace? Halle has had marks that look like bruises for nearly 2 years now... they are right below her hip bones, from the plastic of the brace digging in her skin. The skin is not broken but I guess it's damaged now... she calls them her bruises but bruises wouldn't last that long, even though that is exactly what they look like. Anyone else have anything like this? I am surprised that the doctors dont seem to have any advice for us with it.

[BellasMom]

oh yeah ... :( Bella has a big one - it's in a slightly different place though: on her side at a waist level approximately, where the straps are digging in

And of course, her skin is totally damaged and rough between her legs, where the leg straps are

[Pooka1]

I am pregnant right now with baby #2... I am so worried that this child will end up getting Scoliosis too... How many of you have had more than one child with Scoliosis?

DH's sister has mild Scoliosis and we think that it must have been hereditery and that's why Halle got it, his sister did not require any bracing though, only a 15 degree curve.

Congratulations on the impending arrival! You are so lucky!

The incidence of scoliosis in a sibling/sibling pair is about one third. That was determined from a meta analysis of all available twins studies (fraternal or dizygous twins are equivalent to any sibling/sibling pair) but it was still only about 70 pairs. For incidence of scoliosis...

"Concordance was 73% among monozygous twins and 36% among dizygous twins."

http://www.ncbi.nlm.nih.gov/pubmed/9306532

My monozygous (identical) twins both have scoliosis. They are clones of one another essentially. :)

[mariaf]

MJB,

Congratulations on the new baby on the way!!!

Try not to worry too much about scoliosis being hereditary - I didn't know the figure was one third (thanks, Sharon) but I would have probably said less than half the time - so yes, another child may have it, but they very well may not - and you'll have learned a lot and will be looking for the first signs of it so if it is the case, you'll catch it early.

I agree that I would be a "polite pest" and try to get that second opinion a bit sooner than two months - I find the "squeaky wheel" strategy often works :)

Good luck - and again, congrats!!

[MJB]

Thank so much Pooka and Maria! I am going to try and call the office again today because I didn't get an e-mail response yet.

[AILEA]

My daughter had to change from Spinecor to a rigid brace, Spinecor wasn’t working, and she was nearly 40º out of brace, but we had good results with the rigid one. If one brace doesn’t work, it doesn’t mean that No brace in the world is going to help.


Good luck and Congratulations!!!

[CAmomof2]

Thanks Ailea for the encouraging words and congratulations to MJB !!

[MJB]

Dr. Rivard left me a voicemail and in the voicemail he said that he heard about this board and the conversation I have had and comments I have made from another patient that called him to tell him about it because the patient did not agree with what I was saying....

Honestly, if someone has any issue with something I am saying, please be mature enough to confront me on it and do not go to our Doctor about it and try to make me look bad. I am a mother that is very stressed out right now, with good reason, on top of that I am pregnant and hormonal, so it makes my emotions even stronger right now... If I want to vent on here, I should be allowed to without having the fear that someone would shockingly go to the Doctor to report what I am saying to him.

This is unbelievable...

Thanks to everyone that was supportive, I really truly appreciate it... whether your support was for Spinecor, or against it, we are all entitled to our opinions and I respect each and every opinion.

[BellasMom]

You must be kidding me .... This is outrageous and I can't even imagine how someone would do something like this.

You are totally entitled to your opinions and you are the only one who has a right to decide for your child

I am so sorry you have to go through this

[Pooka1]

This is unbelievable...



Bingo.

.
.
.

[jillw]

MJB, Katie has marks like you refer to. in her case its where her thigh bands are - basically the skin is a little darker from the continuous pressure, but not bruised. My assumption is those marks will remain until she stops wearing the brace when they will begin to fade with time. I think marks or red spots are not uncommon regardless of the brace that is worn. I recall reading a study (although I don't remember where so I can't cite it) that looked into compliance in brace wearing and how to determine compliance. I forget if the study was aimed at Boston braces or TLSOs in general but one of the things mentioned was that seeing discoloration or thickening skin in pressure points would be a positive sign that the brace is in fact being worn. I don't know how it can be avoided while bracing is taking place.

[emarismom]

MJB,

First of all Congratulations on the new baby, they are such blessings.

I am so sorry to read that your daughter's curve has progressed, most, if not all of us here understand how you are feeling. At least you are now aware of it and can look for other possible ways to deal with it. Since the Spinecor has not worked in your case, there may be other braces or VBS that very well may work.

The thought of someone here running to "call" Dr. Rivard seems very far fetched. I would think it more believable that someone actually monitors these boards and reports back to him. Of course that is just MY opinion and it is based purely on speculation of things I have noticed over the 4-5 years I have been reading these boards. I could be wrong.

As for marks on the skin caused by the brace, my daughter had some very dark brown marks on her thighs for a long time. At least a year. I would plead with her not to put the thigh bands so tightly around her thighs. About six months ago she finally listened to me and the marks have faded almost completely. I was really worried that she would have permanent damage or scarring in that area. Thankfully that is not the case.

[BellasMom]

The thought of someone here running to "call" Dr. Rivard seems very far fetched. I would think it more believable that someone actually monitors these boards and reports back to him. Of course that is just MY opinion and it is based purely on speculation of things I have noticed over the 4-5 years I have been reading these boards. I could be wrong.

Either way, it sucks :(

I'll think long and hard now about what to post and what not to :(

[MJB]

MJB, Katie has marks like you refer to. in her case its where her thigh bands are - basically the skin is a little darker from the continuous pressure, but not bruised. My assumption is those marks will remain until she stops wearing the brace when they will begin to fade with time. I think marks or red spots are not uncommon regardless of the brace that is worn. I recall reading a study (although I don't remember where so I can't cite it) that looked into compliance in brace wearing and how to determine compliance. I forget if the study was aimed at Boston braces or TLSOs in general but one of the things mentioned was that seeing discoloration or thickening skin in pressure points would be a positive sign that the brace is in fact being worn. I don't know how it can be avoided while bracing is taking place.

Good to know... Well I hope that it gets lighter over time because it bothers her a lot. It is right where her crease where her thighs meet her torso... they look bluish black, like bruises, it's strange, it could also be because she has brown skin (well like brown).

[MJB]

MJB,

First of all Congratulations on the new baby, they are such blessings.

I am so sorry to read that your daughter's curve has progressed, most, if not all of us here understand how you are feeling. At least you are now aware of it and can look for other possible ways to deal with it. Since the Spinecor has not worked in your case, there may be other braces or VBS that very well may work.

The thought of someone here running to "call" Dr. Rivard seems very far fetched. I would think it more believable that someone actually monitors these boards and reports back to him. Of course that is just MY opinion and it is based purely on speculation of things I have noticed over the 4-5 years I have been reading these boards. I could be wrong.

As for marks on the skin caused by the brace, my daughter had some very dark brown marks on her thighs for a long time. At least a year. I would plead with her not to put the thigh bands so tightly around her thighs. About six months ago she finally listened to me and the marks have faded almost completely. I was really worried that she would have permanent damage or scarring in that area. Thankfully that is not the case.

Actually that crossed my mind also, that maybe he has someone monitor the board, which I also don't agree with because we should have the right to express our feelings when they might be negative without being confronted for it.

Thank you for the response! and for congratulating me! I am so thrilled!

See my daughter doesn't have any marks where her thigh bands are, which seems to be where everyone has them... we have tried putting moleskin on her plastic part of the brace because that is what is causing these marks, they are just under her hip bones I believe... hmmmm well I guess over time once she is out of the brace it will probably fade, maybe with some special cream or something.

[mariaf]

The thought of someone here running to "call" Dr. Rivard seems very far fetched. I would think it more believable that someone actually monitors these boards and reports back to him. Of course that is just MY opinion and it is based purely on speculation of things I have noticed over the 4-5 years I have been reading these boards. I could be wrong.

Good point, Emarismom. That makes sense.

As Bella's Mom said, either way it sucks.

Whoever the snitch is should be ashamed of themselves - whether it is a member here or a spy of Dr. Rivard - or maybe it's the good doctor himself who reads the posts - who knows.

But I'm having a hard time understanding right now how he can consider himself a professional - and I honestly don't give a rats a** if anyone tells him I said that :)

First, he admonished the child as if it was HER fault the brace didn't work when he questioned how much she was wearing it. Obviously, none of us where in the room, but since mom was so upset by what he said and how he said it, I'm guessing he made both mom and the child feel as if he was inferring she wasn't being compliant.

And now this. Does he not realize how much stress a parent is under when they hear their child's curve has progressed?? How can he, her doctor, ADD to that stress by calling her out on her posts???

I'm disgusted by the whole thing.

Big hugs to you, MJB!!

[MJB]

Thank you Maria!

I was just saying in a private message to someone that I am so glad that I was the one that picked up the voicemail and not DH... I can't imagine what it would've made me look like for my childs doctor to leave a voicemail like that, DH would've assumed that I am causing shit online or causing drama, when I don't believe I have... This could've caused problems... I hope to God that he does not mention this at our next appointment infront of DH. I personally don't feel that it's his business (not in a rude way) what I post on a message board and I feel like it's a little unprofessional to call someone out on that.

Dont get me wrong, I do like Dr. Rivard, he does respond immediately when I e-mail him a concern but this just seemed unreal!

Funny thing is that I never pick up the voicemail on our home phone, DH does but because I am waiting to hear from the Dr. we are being referred to at Sick Kids, I have been checking the voicemail daily.

[MNT]

Dear MJB (and fellow Canadian),
Congratulations on your pregnancy-obviously it is quite a stressful time right now for you and your family. You strike me as a very strong mom and I believe that you will be able to focus on positives in this situation.
As for Dr Rivard-he should be more worried about all of us parents getting together and filing a legal action-in regards to the readings of in-brace corrections that (in majority of cases) were an absolute bogus.
If time is a factor for seeing a specialist in Toronto and if either your spouse or you have any other insurance on top of the provincial health insurance you might consider going to the States and obtaining a hard brace there.
Good luck with everything!

[mariaf]

If time is a factor for seeing a specialist in Toronto and if either your spouse or you have any other insurance on top of the provincial health insurance you might consider going to the States and obtaining a hard brace there.

That's a great suggestion, MNT.

In fact, I know several children from Canada who came to the states and were seen at a Shriners Hospital - and in the case of Shriners, insurance coverage would not even be an issue as they do not charge for their services :)

MJB - if you are interested in this option, it's not as complicated as you might think. The contact information for the Shriners Hospital in Philadelphia is in my signature. Like I said, I know of several families from Canada whose kids are being treated there - in fact one of them has an appointment next week and we are even getting together while she's in town!

Let me know if there's anything I can do to help.

[michael1960]

I started a new SpineCor thread regarding a recent bad experience I had with a NYC chiropractor. After posting it I thought maybe I should have posted it here in this ongoing SpineCor thread. Please advice me on where it should be posted.

SpineCor - Bad Experience in NYC - Replacing Straps

http://scoliosis.org/forum/showthread.php?t=10201

I posted my experience hoping that others could learn and benefit from it plus I am looking for any experience/suggestions regarding the replacement of the SpineCor straps.

Thank You
Michael

[mariaf]

Michael,

I replied to you on the other thread. This thread is so long, it's probably best you started a separate one or your post might get lost or buried here :)

[MJB]

Why did something else have to happen.... I would really really like things to be ok with the Spinecor Brace and with Dr. Rivard... I do like him, I do think that he is a caring man and has my daughters best interests in mind but I feel like the biggest mistake has been made this week and I am just at a loss for words...

I wasn't going to post this because I am honestly not trying to make anyone look bad, I don't want to make him look bad and I don't want him to read this on here but I need to vent... I am upset and DH is not happy...

A mom on this site went to visit him this week and somehow my name came up and he gave her my phone number and asked her to call me... She didn't call me, she e-mailed me instead. I am not at all upset with her, she did nothing wrong but I am just very upset because I feel strongly about confidentiality... There is confidentiality in every job and you would think that Doctor/Patient confidentiality would be the highest...

This really bothers me... so much.. I understand he is concerned, I really do but giving out someone my phone number is not the answer.... why did this have to happen? I feel like it's almost so unbelievable that some of you might not even believe what I am saying.... I am in complete, total shock!

After almost 10 minutes of debating whether or not to hit "submit reply" I have decided to go ahead and post it... I should be able to post on a message board when I feel like it, without having to worry about who is going to read it...

I have been so stressed this week, I was in the hospital for 2 days from bleeding during my pregnancy, I don't need added stress right now, I just want all of this to go away... I don't know if I should be leaving this board or what, I don't feel like I should have to but all that has happened since my first post about my daughters latest appointment on March 1st is pure drama. I don't live in a life with drama.

[Katie12YROLD]

We went to see Dr. Rivard yesterday and every time we go Halle is getting worse... Last time she had gone up to 14 degrees (in brace) from 9 and now this time she is up to 23 degrees (in brace). I don't know what to do anymore... she wears her brace 24 hours a day, only takes it off to shower, she doesn't take breaks because her back hurts during breaks. She is 10 years old now and starting puberty, so Dr. Rivard said that this time is critical... I am so worried because it seems like with her onset of puberty she is getting so much worse and this is IN her brace... what is she OUT of her brace? How is she going to hold up when she is full blown going through puberty, gets her period and everything?

My daughter was same as your case, also was 10 yr old , from 32 to 76 now in 3 yrs.now she is 12, I hope you do yoga exercise as your routine job, it may get help. and i don't think spincore will help, my daughter used 2 year, and stoped because find out not stop the curve and the curve was 58, but it made it worse, I don't know if your case or maybe your dr is a good one. Good luck to you.

[MJB]

My daughter was same as your case, also was 10 yr old , from 32 to 76 now in 3 yrs.now she is 12, I hope you do yoga exercise as your routine job, it may get help. and i don't think spincore will help, my daughter used 2 year, and stoped because find out not stop the curve and the curve was 58, but it made it worse, I don't know if your case or maybe your dr is a good one. Good luck to you.

My doctor will not allow my daughter to do any physio-therapy or exercises to try and help strengthen her spine... I was thinking of putting her in some yoga though, I want to take prenatal yoga, maybe they would let her join the class too.

[MJB]

My daughter was same as your case, also was 10 yr old , from 32 to 76 now in 3 yrs.now she is 12, I hope you do yoga exercise as your routine job, it may get help. and i don't think spincore will help, my daughter used 2 year, and stoped because find out not stop the curve and the curve was 58, but it made it worse, I don't know if your case or maybe your dr is a good one. Good luck to you.

So when your daughter was in the Spinecor brace, what was her starting curve and how much did it progress? was the curve 58 out of brace or in brace?

[Pooka1]

I wasn't going to post this because I am honestly not trying to make anyone look bad, I don't want to make him look bad and I don't want him to read this on here but I need to vent... I am upset and DH is not happy...

It is obvious you are not trying to make anyone look bad and that you are relating your experience honestly. Your point of view is valid. Parents' points of view are always by definition valid. Good doctors realize this and acknowledge it and try to work with it. Your situation is not unique and I think that contributed to the reaction. In my opinion you are being handled like you are out of line in some way when in fact you are correct down the line. This is why I started the "Manning up" thread.

A mom on this site went to visit him this week and somehow my name came up and he gave her my phone number and asked her to call me... She didn't call me, she e-mailed me instead. I am not at all upset with her, she did nothing wrong but I am just very upset because I feel strongly about confidentiality... There is confidentiality in every job and you would think that Doctor/Patient confidentiality would be the highest...

This was completely inappropriate. Can I ask what this other parent could possibly have said to you that would advance this matter? I'm just trying to imagine another parent calling me and wondering what the heck they could possibly tell me.

This really bothers me... so much.. I understand he is concerned, I really do but giving out someone my phone number is not the answer.... why did this have to happen? I feel like it's almost so unbelievable that some of you might not even believe what I am saying.... I am in complete, total shock!

I believe what you are saying because a pattern is developing in the testimonials.

After almost 10 minutes of debating whether or not to hit "submit reply" I have decided to go ahead and post it... I should be able to post on a message board when I feel like it, without having to worry about who is going to read it...

I'm glad you did. You are advocating for your child.

I have been so stressed this week, I was in the hospital for 2 days from bleeding during my pregnancy, I don't need added stress right now, I just want all of this to go away... I don't know if I should be leaving this board or what, I don't feel like I should have to but all that has happened since my first post about my daughters latest appointment on March 1st is pure drama. I don't live in a life with drama.

This is what adds another dimension let's say to Rivard's actions. He seems a bit reckless.

Carry on. You are contributing a lot to the forum.

Best regards,
sharon

[Pooka1]

My doctor will not allow my daughter to do any physio-therapy or exercises to try and help strengthen her spine... I was thinking of putting her in some yoga though, I want to take prenatal yoga, maybe they would let her join the class too.

Ask if there is any basis (evidence) whatsoever to restrict PT.

I suggest there is none and telling you not to do PT if when there is no evidence not to do it is wrong FULL STOP.

[mariaf]

I find Dr. Rivard's actions unbelievably reckless, irresponsible and UNPROFESSIONAL.

MJB - YOU are not creating this drama - nor should you leave this board. I am so glad to hear you say that you should be able to post on a public forum if you feel like it and not worry that "Dr. Unprofessional" is looking over your shoulder.

I truly believe he should be reported to the appropriate licensing board.

Did he want this mom to call you to try to persuade you to keep seeing him? or that his brace was effective?? Like Sharon, I can't fathom what this mom was supposed to do or say that was going to help your situation - except that IMHO improving your daughter's situation is NOT Dr. Rivard's main goal here. That fact has become painfully obvious.

I can tell you that on occasion parents of patients who see Dr. Betz or Janet in Philly are given my contact information if they ask to speak to another VBS parent, for example. BUT this is only because Janet and I had this discussion a long time ago and she ASKED MY PERMISSION first. She said she would NEVER give out a patient's contact information unless she was expressly told it was OK to do so.

THAT is how medical professionals are supposed to conduct themselves.

[Pooka1]

I find Dr. Rivard's actions unbelievably reckless, irresponsible and UNPROFESSIONAL.

MJB - YOU are not creating this drama - nor should you leave this board. I am so glad to hear you say that you should be able to post on a public forum if you feel like it and not worry that "Dr. Unprofessional" is looking over your shoulder.

I truly believe he should be reported to the appropriate licensing board.

Did he want this mom to call you to try to persuade you to keep seeing him? or that his brace was effective?? Like Sharon, I can't fathom what this mom was supposed to do or say that was going to help your situation - except that IMHO improving your daughter's situation is NOT Dr. Rivard's main goal here. That fact has become painfully obvious.

I can tell you that on occasion parents of patients who see Dr. Betz or Janet in Philly are given my contact information if they ask to speak to another VBS parent, for example. BUT this is only because Janet and I had this discussion a long time ago and she ASKED MY PERMISSION first. She said she would NEVER give out a patient's contact information unless she was expressly told it was OK to do so.

THAT is how medical professionals are supposed to conduct themselves.

Indeed. I, also, was asked my permission if the surgeon could give out certain medical/personal information to another mother requesting to talk to other parents who went through the surgery. I gave my permission and have spoken with others. But they asked my permission FIRST. It would have been reportable had they not asked my permission first.

Rivard appears to be operating outside the normal guidelines in perhaps a Hail Mary attempt to support Spinecor. Based on the totality of posts on this topic but especially the multiple apparently erroneous in-brace readings, this is not someone whose research papers I would waste time reading. This seems to be a conclusion many surgeons in the orthopedic commmunity apparently reached a while ago. There is a reason for everything.

[emarismom]

Just an update-

Emily now 11 1/2 had an oob yesterday. She is currnetly at 29 degrees, so she is inching upwards. Over the three years in Spinecor she has increased a total of 8 degrees. Obviously during that time there has been considerable growth- approximately 6 inches.

While I am not happy, it could be worse considering. Got a new brace as she has outgrown the old one and with this number at this age I have to do something.

[beauvais]

I can't possibly read all these responses, but in reply to your initial question, my daughter used Spinecor for a year and progressed quite a bit, but may have progressed anyway. She's now in a Cheneau and improving. As with all things, Spinecor has its pros and cons (one pro is definitely the "soft, flexible" aspect). Although, at 8 years old, it took my daughter a total of 2 weeks to adjust to her Cheneau and now she forgets to take it off for her allotted 2 hours a day and just wears it around the clock. I've had some slightly negative interactions with the Spinecor folks, but I still think what they have going on has great potential, especially for the very mild curves.

[michael1960]

My daughter has been in the SpineCor since Nov 2009. She was at 36 degrees (oob). She has consistently been at about 30 degrees (Jan 2010 and Mar 2010 measurements).

Dr. Betz recommended a Boston brace to reduce her curve below 30 degrees so she can be considered for VBS (staples only) vs VBS with Hybrid Rod. He approved her wearing the SpineCor to school and sporting activities and the Boston brace at home and at night. She is about 18 degrees in the SpineCor brace and about 13 degrees in the Boston brace. She may be a bit more in the Boston brace now as we have started to tighten it beyond where it was when she was first fitted.

Prior to considering VBS I had already considered a Cheneau brace (instead of the Boston brace). I was planning on having her wear the Cheneau brace part-time like she is doing with the Boston brace.

The reason for considering the Cheneau brace was my concern on whether the SpineCor brace could hold an aggressive curve or hold the curve during the significant growing years (beginning around 11). I had planned on switching to the Cheneau brace full-time.

But for now we are trying the SpineCor and Boston braces and I look forward to see how she is doing at our next checkup in May.

Tina - I would be interested in the main reason you chose the Cheneau brace over any other brace. Was it due to the design of it or that it seems to be highly recommended with Schroth exercises? I had thought about it because I had seen some great correction with it and it seems to allow for some space for breathing. The Boston brace is very tight in the front against the chest.

Michael

[jillw]

Hi Emarismom! Sorry that she has crept up, but am glad that for the past three years it has stayed under 30...just curious, how had her in brace xrays been during the time frame? in other words was her in brace xray consistent, or did her in brace xray also creep up from whatever the low measurement she's gotten in brace?

When you say a new brace, do you mean a new spinecor brace because of all her growth? or do you mean another type of brace altogether? Either way, good luck!

This is a scary age, isn't it?...of Emily's 6 inches of growth has it been spread out or have you noticed faster growth more recently? My daughter will be 10 this summer so could start to grow faster soon (or not- i suspect she may end up hitting that growth spurt late)

[emarismom]

Emily's in brace rays have ranged from about 16 to 21 over the years. The most recent one being Nov. 09 at 17 degrees. I have been alternating in and out of brace xrays every 5 to 6 months.

We did get a new Spinecor brace. When I go to see her ortho I will see what he suggests at this point and go from there. Her old Spinecor brace was getting too small.

Emily's growth has been spread out, which I think is a good thing. I am very nervous at what the next year holds as she does seem to be getting taller lately. She is 4'9 now and maybe just at a Risser one. Alot of growth is left.

[CAmomof2]

Well, as you can see from the signature, our daughter's curve is increasing despite wearing the Spine Cor brace. She grew 8 cm last yr., so I think the brace is just not "strong" enough to hold her anymore. She is due for a new brace, as current one is getting too small, but we are proabably going with something else - considering VBS. Hope everyone is doing well.

[michael1960]

CAmomof2

My daughter is 8 1/2 and has been in the SpineCor brace since Nov 2009. She was 36 deg Oct 2009. We met with Dr. Betz Feb 2010 to discuss VBS. He suggested a Boston brace to try and hold/reduce the curve. She started Boston brace Mar 2010. She is wearing the SpineCor to school and sports and the Boston brace at home/night.

My plans were to switch her to a hard brace (if still bracing) when she started her growth spurt (around 11). It looks like your daughter has already started her growth spurt. While the SpineCor brace has been good for us I have very little confident in it being able to hold a curve during the growth spurt years (i.e. 11-13).

At 35 deg (if that is thoracic) your daughter is at the upper level for VBS (without the hybrid rod). I don't know if you have already been working with a VBS doctor but I would assume he/she might recommend a hard brace ASAP to stop any additional curve progression (to keep her at or below 35).

Since my daughter has already reached 36 Dr. Betz suggested VBS/Hybrid Rod. However, if she could get back down below 30 for a period of time he would consider VBS (without the hybrid rod).

Right now her 36 deg curve T4-T12 is about 24 but within the T4-T12, the largest curve is now about 28-30 at T5-T10. I think the Boston brace is really going to help her. She gets much better correction in the Boston brace than the SpineCor brace. We get our next set of measurements in June. We have also considered a Rigo-Cheneau brace, especially if we plan on bracing for a longer period of time.

Please let me know if you have any questions.

Michael

[mariaf]

CAmomof2,

As you can see from my signature, my son had VBS over six years ago - and I would be happy to answer any questions you may have. I think now is a good time to seek an opinion if you are interested in VBS. As Michael pointed out, 35 degrees is generally the cutoff for VBS alone, although each case is evaluated individually in all respects.

The contact information for the team at Shriners in Philly (where the vast majority of VBS surgeries have been performed) can be found in my signature.

Best of luck to you and please keep us posted!

[Back-out]

I was looking into a Spinecor brace for myself (c/o Dr. Deutschman and partner), and although this is the adolescent thread I have a comment about the mechanics of presenting the posts.

I was (AM, though to a lesser extent) interested in the Spinecor though I decided against for now. Its pain relief wasn't as great as I'd hoped and not being able to get even a rough idea of insurance coverage through my out of state plan, I couldn't make the needed cost:benefit calculation So I was out $450 (!)

But I was interested enough to read about it. Delving into the adolescent thread was just a whim, but I was overwhelmed by the impossibility of taking advantage of it. A thread hundreds of pages long, is impossible to read. Mightn't such out of control threads be broken into useful bites to benefit someone interested in a Spinecor (~$5K, plus transportation), or any special product or treatment,?

I can easily imagine how such threads evolve over time, but perhaps they could be modified for access of information. The search function can help, but only to a limited degree.

Perhaps they could be divided into "chapters" according to chronology or sub-topics? After X numbers of pages or months, they could be stopped and resumed. Or maybe there are logical breaks by contents here and there (?).

Most useful for the reader (and practicable for the site), perhaps each respondent could fill out a short rating summarizing their experience with Spinecor (or whatever treatment or product is under discussion as Amazon and other online review sites do.

Then the user's overall comments could be headlined and grouped by that short scoring system so we know whether their experience was mostly a) positive, negative, mixed (or neutral). There are better groupings too, such as specifics of level of pain reduction, (net) curve response (curves were reduced, stabilized, grew worse) and so on.

Then readers could see overall response categories and sample from group responses, reading as much of their stories as we wanted to. It is very hard to make use of this compendium of information on any topic - in this format. This is a shame since it's potentially the most useful available, being both unbiased and empirical.

[cherylplinder]

Hello Spinecor users
I haven't been on the board in a couple of years but tuned in today and saw some of MJB's confusion.
My daughter had surgery in Feb of 2009. The last year, she wore the Cheneau brace.
Dr. Rivard told me he measures the same 2 vertebrae every time he measures a curve from diagnosis to end of treatment.
Other orthopedics measure the Worst 2 angles to access the curve.
That is one reason Dr. Rivard gets such different readings on his measurement of the curve.

Best Wishes

Cheryl

[Pooka1]

Hello Spinecor users
I haven't been on the board in a couple of years but tuned in today and saw some of MJB's confusion.
My daughter had surgery in Feb of 2009. The last year, she wore the Cheneau brace.
Dr. Rivard told me he measures the same 2 vertebrae every time he measures a curve from diagnosis to end of treatment.
Other orthopedics measure the Worst 2 angles to access the curve.
That is one reason Dr. Rivard gets such different readings on his measurement of the curve.

Best Wishes

Cheryl

Wow thanks for typing that. That perhaps exonerates him from outright malfeasance for now. There are now enough testimonials of apparently misread radiographs, one very recently from another group, that there had to be something going on.

But if he is doing that, he needs to state that in the journal articles. I don't recall if he mentions he is doing that. And if he doesn't mention it then there is a reason. I'm guessing that reason is that this is NOT the norm. Maybe other surgeons became wise to this and that is why the dismiss the Spinecor literature.

On the other hand, I have to wonder how much the two most tilted vertebrae change in the course of brace treatment. I question whether it changes much. That said, the Hawes article stated that some readers felt her end vertebrae changed but I think that is an unusual case for several reasons and was a longer time period.

So I am still somewhat skeptical that Rivard's explanation is really why there are any misread radiographs. And I still think there is a cloud over their literature.

[jillw]

CAmomof2,

It does sound like your daughter has entered a period of faster growth. I"m sorry to hear that her curve isn't holding. Good luck as you decide what to do next. Please keep us updated!

Cheryl, good to see you. How is Rachel, post surgery, doing these days?

[michael1960]

Cheryl

I am not sure what post you are referencing regarding MJB's confusion but you raise a point that I have asked on other forums: What is most common when measuring the cobb angle?

1. measure using the same vertebrae each time

2. measure the worst angle

3. or both

For my daughter I have worked with 4 orthopedic surgeons, 3 chirporactors, and 2 orthotists and it has not been consistent.

For example, OCT 2009 my daughter (8) was 36 degrees from T4-T12. By Jan 2010 it was 30 degrees (from wearing SpineCor brace). We did a two week PT treatment in January that reduced the T4-T12 from 30 degrees to about 24 degrees. But the T5-T10 increased from about 28 to 30. So, the original T4-T12 curve continued to decrease but there was an increase in the T5-T10. It is so important to know which vertebrae are being used.

And in March (after continued SpineCor brace and home exercises) the T4-T12 remained at 24 (we were able to maintain what we gained in Jan) and the T5-T10 was back down to around 28.

So, I have often asked others, when they say in their profiles the curve has reduced from 30 to 25 or 30 to 20, which curve is being measured (original curve or worse curve). Surprisingly, many do not know.

I guess I would conclude, for my daughter who was at 36 T4-T12 and is now at 24, that we are moving in the right direction and the treatment has been effective. However, when measuring the worse curve, we have gone down from 36 to about 28, still moving in the right direction, but not as low as 24.

When it comes to treatment decisions, like VBS, I assume that worse curve measurement T5-T10 would be used, regardless of the T4-T12 measurement.

When I evaluate a scoliosis treatment (PT, brace, etc.) I focus on both measurements. Largest curve we are trying to manage (36 deg at T4-T12 now at 24) and current worst curve (28 deg T5-T10) before and after treatment.

I have no perspective or comments on how this relates to Dr. Rivard other than Dr. Rivard seems to be consistent with some of the orthopedic and chiropractors that have been part of our treatment, and inconsistent with others.

I would be interested to hear the experience of others regarding how the cobb angle measurement is taken regarding original vertebrae or worse curve. For many, it may be the same. Maybe only during certain intensive treatments is there a chance that the original vertebraes no longer represent the worse curve.

Thanks
Michael

[LindaRacine]

The Spinal Deformity Study Group Radiographic Measurement Manual is the bible on curve measurement. In that manual it states:

The end vertebrae (EV) are the most tilted vertebrae on the cephalad and caudal ends of a curve. The neutral vertebra (NV) is the most cephalad vertebra below the apex of the major curve whose pedicles are symmetrically located within the radiographic silhouette of the vertebral body. To identify "the stable vertebra", first, a vertical reference line (CSVL) is erected from the mid-portion of S1. The most cephalad vertebra immediately below the end vertebra of the major curve which is most closely bisected by the CSVL is the stable vertebra (SV). Typically, the end, neutral, and stable vertebrae are different vertebral segments. However, the end, neutral and/or stable vertebrae may occasionally overlap in the same vertebra.

That's going to be next to impossible for a layperson to understand, especially without the diagram that goes along with it. However, it does tell us that curve measurements should be based on the specific films as opposed to using the same vertebrae for all films.

--Linda

[Pooka1]

The Spinal Deformity Study Group Radiographic Measurement Manual is the bible on curve measurement. In that manual it states:

The end vertebrae (EV) are the most tilted vertebrae on the cephalad and caudal ends of a curve. (snip)

(snip) However, it does tell us that curve measurements should be based on the specific films as opposed to using the same vertebrae for all films.


Okay this is as I suspected although I doubt the end vertebrae (most tilted) change in many cases except in unusual cases like Hawes where we are dealing with long periods of time and inordinate amounts of PT/massage. :D

Therefore there is ONE Cobb angle for any curve and any professional stating any more angles besides those measured in-between the two most tilted vertebrae is just obscurantism or misdirection or subterfuge something. :cool:

This alone and all by itself could explain why the Spinecor literature is dismissed by surgeons... non-standard method of measuring angles over time.

Now the quesiton is WHY do Rivard/Coillard use this non-standard method? I have a guess...

Also, do they state CLEARLY they are using a non-standard method? There may be blame in the article review stage for papers getting through with this issue.

[concerned dad]

In scientific investigations there is something called “investigator bias”.

“From the very outset, investigator bias can influence the general attitude towards a research project. Research is at its best when it tests (or, more precisely, falsifies) hypotheses. The biased researcher, however, has preconceived ideas and is likely to approach a project to 'prove' a point. For example, a researcher who is convinced of a particular treatment or, worse, has a vested interest in it, might misuse science to demonstrate the efficacy of his therapy.”

If for no other reason than this potential bias: if your child is being treated by a researcher with a vested interest in his product, you should make every effort to INDEPENDENTLY evaluate the results that are claimed to be achieved.

I did this with the in brace results supposedly achieved by my daughter and was horrified and infuriated with what I found. I was horrified thinking that perhaps our situation might not be unique (though I acknowledge that it may be), and I was infuriated because had I not discovered what I believe to be (I’ll use a nice word) the “bias”, my daughter would have had to bare the burden of wearing a brace NOT likely to help her.

Have your child’s xrays evaluated by a qualified, independent, and unbiased expert. That is your right. I would also suggest that it is your responsibility.

[Pooka1]

CD!!!

We missed you didya miss us didya didya didya?!?!?!?!??!?

[concerned dad]

Hi Sharon, I havent had a chance to stop in and see much of what is going on but I saw the recent discussion and felt that I should at least offer my opinion on the matter.

I feel it is important to (as Reagan said regarding arms reductions) "Trust but verify"
I've been busy applying what I learned here regarding clinical trials to biotech investing. I am currently involved with a stock whose drug was tested in a cross-over trial. There are challenges in such trials and I know BRAIST was recently modified to allow cross-over. I am wondering how the trial is going and how they plan on dealing with the statistical analysis.

My daughter is doing great. We go for an appointment in early August. I feel comfortable with our decision: if she progressed (and she may have) we will deal with it knowing that she could have progressed irregardless of bracing and all the evidence we had available at the time suggested her skeletal maturity would have limited any potential bracing efficacy.

I dont want to clutter up the thread. I hope everyone is doing well and all are acheiving great success with their chosen treatment, whatever it may be.

[mamamax]

In scientific investigations there is something called “investigator bias”.

“From the very outset, investigator bias can influence the general attitude towards a research project. Research is at its best when it tests (or, more precisely, falsifies) hypotheses. The biased researcher, however, has preconceived ideas and is likely to approach a project to 'prove' a point. For example, a researcher who is convinced of a particular treatment or, worse, has a vested interest in it, might misuse science to demonstrate the efficacy of his therapy.”

If for no other reason than this potential bias: if your child is being treated by a researcher with a vested interest in his product, you should make every effort to INDEPENDENTLY evaluate the results that are claimed to be achieved.

I did this with the in brace results supposedly achieved by my daughter and was horrified and infuriated with what I found. I was horrified thinking that perhaps our situation might not be unique (though I acknowledge that it may be), and I was infuriated because had I not discovered what I believe to be (I’ll use a nice word) the “bias”, my daughter would have had to bare the burden of wearing a brace NOT likely to help her.

Have your child’s xrays evaluated by a qualified, independent, and unbiased expert. That is your right. I would also suggest that it is your responsibility.

Welcome back CD! You have been missed :-) Excellent posting. Personally, the very fact, and it is a documented fact, that "readings" can vary as much as 5 degrees (or more) between readers - and even vary with the same reader .... annoys me. It's 2010, we should have a method of reading cobb angle measurement that is an exact science. But we don't and I find that very frustrating. Agree that one has a responsibility to include an independent unbiased expert - In my case that expert is my orthopedic specialist. So far, readings match - which almost seems an oddity.

While you've been absent for awhile - you've not been forgotten and maybe like a lot of others, I've kept you and your family in my thoughts. Thanks for the well wishes you posted for us. I'm ready to wean out of brace and plan a personal program to maintain the benefits I've found. Another member here (Daily Strength) has recommended a book that is proving valuable - maybe you will want a copy for your daughter: Curves, Twists and Bends: A Practical Guide to Pilates for Scoliosis by Annette Wellings and Alan Herdman. The publication is new (this year) and the author who is my age, offers some very good tips for self management.

Good, no - Great, to see you!

[jaymes10]

When I found out that my 3 young daughters had scoliosis I did alot of research on braces, doctors, and facilities. Dr. Noonen a world renowned Orthopedist when he met our then 5yr old only focused on the fact she would have a fusion its a question of what age. Not what I was going to listen to! Of all the places I went Dr. Sandes and Shriner's Erie, PA were the best. We did get the Spine Cor brace from there for our then 5 yr old and did not get good results. She has been back in the Spine Cor brace for 1 1/2 yrs with Dr. Rivard and things are great. At one point she was a 52 degree thoracic and last week we came back from Montreal and she is at 20! She went down 9 degrees in 6mo and had a 3cm growth spurt. *We live in Wisconsin and we fly into Burlington VT and drive across the border appx. drive 1 1/2 hours. The Holiday Inn on Williston blvd. give us a *hospital rate of $79/night and its right next to the hwy.

[MJB]

Hello Spinecor users
I haven't been on the board in a couple of years but tuned in today and saw some of MJB's confusion.
My daughter had surgery in Feb of 2009. The last year, she wore the Cheneau brace.
Dr. Rivard told me he measures the same 2 vertebrae every time he measures a curve from diagnosis to end of treatment.
Other orthopedics measure the Worst 2 angles to access the curve.
That is one reason Dr. Rivard gets such different readings on his measurement of the curve.

Best Wishes

Cheryl

I'm sorry to hear that your daughter needed surgery... We have gone to Hospital for Sick Children in Toronto this week and on June 9th my daughter will get casted to make a mold for a Cheneau Brace. I don't know anything about the Cheneau Brace, so I am really worried and nervous.

[jillw]

Good Luck MJB. From the stories that others have posted, it seems like the Cheneau is pretty comfortable for a hard brace. ....not that any brace is actually comfortable, but you know what i mean.

Let us know how it goes!

[MJB]

Thanks Jill!

[RugbyLaura]

Hi all,

Back for my annual visit, checking up on you all :). Marlowe, sorry to hear about Halle's progression but delighted to hear your other news!!

We had Immi's 3 year check-up last week - I don't know whether you'll remember but last summer her curve had jumped to 35 degrees in brace and we were going to try to persuade her to be a little more compliant... It didn't work; Immi has not worn her brace since before Christmas - her heart wasn't in it and nor was ours.

X-ray this summer showed a curve of 47 degrees, pretty much what we'd expected. Her consultant, who we trust and are 100% happy with, has said that once it gets over 50 degrees (pretty much a certainty) surgery is unavoidable. He is happy to leave the timing up to us - actually up to Immi - and has explained that he will get the same results with the same level of risk at any time during her teenage years. He will therefore wait until Immi says she's ready, which he suggests will be around 15 years old.

I remember first coming to this forum 3/12 years ago as an emotional wreck, terrified of what the future held. I am truly grateful to all of the wonderful friends I have made, many of whom have now moved on, for helping me through the early days. I am also extremely grateful that we found and used Spinecor for 2 1/2 years - I believe that this delayed the inevitable by enough time to buy her time to grow.

Good luck to you all.

Laura x

ps This sounds like goodbye but I'll be back!

[BellasMom]

It seems that both you and Immi are at peace with having a surgery - that's great!

Yet, it's one more story with SpineCor not working, but buying time - I feel that we are in the same boat unfortunately

Good luck to you and Immi!

[RugbyLaura]

Wow, that was quick!

Thank you for your good wishes - at peace? I guess so... But I wish we didn't have to be.

I realised I forgot to say that Immi's brown patches (pressure marks??) have completely disappeared now.

And I want to say again that this and the other (UK) forum have helped me remain sane. To be able to communicate with people experiencing the same thing, with people who understand what you're going through because they're going through it too, helps beyond measure.

Edited to add that, for us, SpineCor has worked... Our consultant was always honest with us about the limited evidence of success and statistical reality of having a 9 year-old with a 38 degree curve. We did get a bit carried away occasionally, but deep down have always known that surgery was inevitable.

[pat]

Hello (haven't posted in a long time) my daughter's out of her brace, she was at a "20" five years ago when we first got her braced, and now she's 16 years old, 12 inches taller, and her curve is 28 . . . so, I believe, we've been successful with the Spinecor brace.

p

[Sherie]

That's great Pat! I think the key here is that you caught it early on and you were proactive about it. Congrats to your daughter, sounds like she's going to be fine.

[Pooka1]

Laura,

Great to hear from you again!

Sorry about Immi but it's good that she will have time to decide.

Best regards,
sharon

[christine2]

Hello everyone
I also believe my daughter is a success story. We started using Spinecor to buy us time. I don't know what the future will bring she may still need surgery but we now have time. She was 33* @ 6yrs old. She is now a -6* @ 10yrs. She is completley compliant w/ bracing (I am sure that will change soon) But we are in the best position we can be in for the growth spurt.

I had to chime in, miss you all

[sasha1]

Hi all

This is my first time posting. My 13 year old daughter Rach was diagnosed with scoliosis in march of this year. We have opted to use the spinecor brace L24 with so far pleasing results. In brace xrays show her curve stable at L8.

It has been quite a risk for us as the spinecor brace is virtually unheard of in Australia. We are from Sydney and my daughter is desperate to connect with other teenagers like herself. She loves to dance and has been accepted into a full time ballet school which we are putting off at the moment as she works better when not in the brace. She is very compliant though the brace is cutting her rather badly around the waist.

We go for her next lot of xrays in 2 weeks. fingers crossed

Sasha

[Sherie]

Hi Sasha and welcome,

Your daughter might want to try "Spinekids", its a forum for kids with scoliosis, she'll find a lot of support there.

That's great that the spinecor is working for her. We tried it too, but it was too late, my dd's curves were too far along by then. Hope you have continued success with it.:)

[jillw]

Hi All,
We had a good appointment in Montreal recently and all remains basically stable at 2T/3L in brace (see signature below for details). My daughter just turned 10 so any time in the next couple years that spine growth spurt could begin. I feel like we are in a great position to start the growth spurt, but am nervous what the period of fast growth will bring. My hope is that if she progresses, it will not be a giant jump like some people get, but a slower progression which gives us time to figure out the game plan. For now though, things look great (fingers crossed)


I guess I've missed the posts in this thread that have been posted in the past couple months.

Pat, Congratulations to your daughter!!!! I would consider it a gigantic victory if my daughter could make it through spinal maturity with only an 8 degree increase. How old was she when she was diagnosed/started bracing?

Sasha, a 67% in brace reduction sounds promising. How long has Rach been in the brace? Let us know how her next appointment goes. Sorry my daughter's not yet old enough to be Rach's peer. Does she do her ballet both in and out of brace? My daughter dances also- though mainly tap and jazz. She does those classes in brace but does take her brace off for her ballet class. However, with Ballet school (congrats by the way!) i'd imagine they are spending many hours each day on ballet?

[Ballet Mom]

I agree jillw....slow is good (if it's going to happen). Fast is not. There is barely time to respond. It sounds like your daughter is in a great place to start her growth spurt. Good luck.

Sasha, my daughter is also in ballet and when she was twelve she was also invited to attend a full-time boarding ballet school. We chose not to do it because it was across the country and she was so young. It turned out to be a very fortunate decision because she was diagnosed with scoliosis later during that twelfth year, and we absolutely could not have managed her treatment if she was attending that school. I needed to watch what was going on and ensure she was wearing her brace as required. Maybe as she gets past the growth spurt and closer to physical maturity, it might be easier to do.

[emarismom]

Hi all,

Just an update. Emily continues to wear the Spinecor. Currently she is 31 degrees out of brace. She is almost 12 and has grown quite a bit, but as yet is pre-menarcal. Doctor says next visit he will xray her hand to see how much growth is left. While certainly I am not happy that her curve has been trending upward, we are still within the margin of error from where we started on this journey at 28 degrees almost 6 years ago.

[jillw]

Emaris mom, Thanks for the update. That's great that she has stayed within a 3 degree range over 6 years of growth. Just curious, she is still pre-menarchal but has her rate of growth increased at all over the past year or two? Or has she still been growing at a steady consistent rate?

[emarismom]

Over the last 6 months she has been growing very quickly. From late March until mid May she grew an inch and a half! I was terrified as to what curve would do. I haven't measured her for a while, so I am nit sure how much she has grown since then. Guess I'll get to that this week.

[sasha1]

HI all
its so good to hear all your stories. To answer your question Rach has been in brace for 6 months. Just started periods is growing very fast. Dances without the brace but only in two hour lots. We have been very lucky that the full time ballet school is allowing her to just attend one saturday class at the moment till she is out of brace. Other days she attends a local studio
Next workshop there will go for 4 hours so half in half out of brace.
Her next appointment is tomorrow. Fingers crossed. Hopefully they will loosen it a little as we can't seem to heal a sore that has developed on her side and its not even summer.
Cheers Sasha