spinecor

[cherylplinder]

Christina,
We did not get 10 degrees at the first fitting, only 7, but by her follow-up adjustment, we achieved 15 degrees of correction. At her last visit she had 18 degrees of correction. Just looking at her, I think she has achieved more in the last couple of months. She has been much more aligned with every month! Yay!!!!!!!!!!!!!!!!!!!!
Dr. Sponseller and his staff are wonderful. I have heard great things on this forum about him. He also has one of the best surgical records. He achieves amazing correction. One of the parents that went to like 5 orhopedic surgeons comparing correction, etc for surgery, posted. They chose him and were thrilled.
Yes, I agree, Thanksgiving does seem like a long way off.
Have you considered Montreal? I flew Air Canada for about 250 a person the first time. Dr. Rivard gave me an appointment for about 2 weeks after I first contacted him. They are so caring and wonderful. Several from the US have gotten their insurance to cover them there, you could check. No harm.
I understand how you feel. Between the time our ortho decided to brace, the 3 weeks we waited to get the brace, and the 3 weeks we had to wait for an x-ray, 6 weeks passed. Rachel's curve progressed 5 degrees in the 6 weeks.It feels like an emergency even though most curves don't progress that rapidly many obviously do.

Best of luck!!! Let us know what happens.

[Celia]

I never realized there was such a huge difference between the in/out brace scoliometer readings. Deirdre had the reading without the brace so I should be relieved !!!! *phew* One less thing to worry about :p The assistant "SueAnne"? is such a sweetie pie, she actually showed me how to measure with the scoliometer and I was looking over her shoulder when she got the reading. Cheryl, do you have your own scoliometer ?

[gerbo]

so I should be relieved !!!! *phew

told you so :p :p

what i do wonder, can you see or feel any evidence of a lateral curve when she is out of brace?? She hasn't had a recent out of brace xray, has she?

when i feel lisanna's spine, you can just about feel a tiny bit of a curve, and it is so hard to imagine how big a curve this represents on an x-ray, although I do understand that this is due to the rotation keeping the spinous processes towards the middle.

when i massage her back she is always quite tender on the convex side of the apex, on the side of the spinous processes. Been wondering why. Chhronic excessive stretch on the ligaments there?? Anybody noticed this??

[Christina_in_NC]

Cheryl,
Your daughter sounds like she has done great with Spinecor - and similar curves to mine. Maybe if they come close to a 10 deg correction in brace I'll push for it.

Gerbo,
as to the tenderness - my daughter is definitely more tight and tender on the convex side of the lower curve. I asked the PT why it would not be on the other side, but her whole back is more tender/tight on that side and that is the concave side of the worse curve (upper curve).
Christina

[Celia]

what i do wonder, can you see or feel any evidence of a lateral curve when she is out of brace??

Out of brace she looks really good! I'd love to be able to massage her back - I did when she was still in casts and a lot younger but now she's six years old and very aware of her body and refuses to even let me touch her spine for more than a few minutes. :rolleyes:


I was wondering if everyone takes the 2 hour breaks in the morning and afternoon ??? Was anyone told that it's absolutely necessary to take the breaks and if so what was the reason given because we've been doing 23 hours/day since Deirdre doesn't like to have the brace off for very long.

[cherylplinder]

I have mentioned every time that I'm there that Rachel wears the brace about 23 hours a day. No one has ever said that the two breaks of 2 hours are necessary. Dr. Coillard and Dr. Rivard have both heard me mention how we wear the brace. I used to make her back hurt to have it off. Now, I just don't want to change anything we have been doing for fear it might change our outcome.

[MATJESNIC]

Hi All,

We told Dr. Deutchman at our 2nd appt that it was impossible to take 2 breaks because the morning was spent getting ready for school. He had just been to a conference where they said that one break was fine. But it is important to take that 1 2-hour break. I always make sure that Nicole takes it at some point during the day.

Last year when she danced 6 days a week, it was tough to even find 2 hours to take the break because you should take the break when the child is not active. I didn't want her to take the break during dance.

But I agree with you that many times it seems such a chore for them and they don't feel like taking it off. That is good because it means it is like a 2nd skin to them and it is not a hardship to wear it.

But when Nicole does take it off, she always says, "Aaaah" because then she realizes how free she feels. That is good too because that means it must have been tight enough if it feels good when it comes off.

I'm sorry I am rambling on. Don't even know what I am saying. It is 3 in the morning and I just can't sleep.

Melissa

[gerbo]

It is 3 in the morning and I just can't sleep.

make yourself a nice glass of warm milk, distract yourself from your worries by getting a sloppy roman or an easy, boring video and hopefully tiredness will take over soon

take care

gerbo

[gerbo]

I'd love to be able to massage her back - I did when she was still in casts and a lot younger but now she's six years old and very aware of her body and refuses to even let me touch her spine for more than a few minutes

Lisanna absolutely loves touch and is very keen to get her massages in which I try to find a mixture between pleasure and "therapy" (though admittingly I am not trained at all to do anything therapeutic)

I think there is the risk that as our children sense our "obsession" with their backs, they get very paranoid about every look, every touch, every remark in connection with their backs. (Why are you looking?? Is there something wrong? Why have you got that worried look on your face?) Through this they associate their bodies with problems and worries, rather than a source of pleasure and instrument to live life!

If I were you celia, I would try to break through that resistance, whilst she is still young, very carefully, by focussing on letting her experience that touching her back can also be pleasurable. You could either start with other parts of her body (lisanna loves having her feet done), or alternatively you could establish a family massaging session, where everybody gets and gives a turn (good for familydynamics as well) Whilst you do this, ofcourse resist any temptation to deliberately touch and "check" her spine.

(apologies for the advice you did not ask for........)

gerbo

[MATJESNIC]

Gerbo,

What is a sloppy roman?

It sounds as though you have a very close relationship with your daughter. My two girls barely let my husband give them a hug, let alone a massage.
But Nicole sometimes wants me to scratch her back and I do. But of course, I think I always say something negative about the shoulder blade that is sticking out. I could kick myself because I am sure I am adding to poor self-image.

If she ever needs surgery, I was told that the shoulder blade will always stick out afterwards. So I should really stop talking about it to her.

I am constantly looking at and checking Nicole's spine. I know I have that worried look on my face many times.

The other day, Nicole and I were looking in the mirror together and she said, "Look, Mom, one shoulder is higher than the other." Of course, my day was ruined.

Anyway, I will try to go to sleep.

You are very right about not making those negative comments.


Melissa

[gerbo]

I am sure you have come across the "serenity-prayer"

God give me the serenity to accept things which cannot be changed;
Give me courage to change things which must be changed;
And the wisdom to distinguish one from the other

good night

[gerbo]

although somehow i prefer this version

"Lord, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to hide the bodies of those people I had to kill because they pissed me off."

[AILEA]

I love to massage my daughter’s back, and she enjoys it too, but I must make a huge effort to keep calm....I’m always checking her back, posture, the brace, the exercises....; I thought she didn’t realized, but she does. She has told me several times that i´m obsessed, and in fact she is true: I’m.
It’s difficult, but I try not to worry her; I don’t want to give her a complex, She is a teen, and has to wear a brace, that´s all. When i´m especially worried, and i think she is going to realize, i do the cleaning. Now she says, that i´m obsesed with the cleanliness, and my house is now more tidy than ever!

[MATJESNIC]

Gerbo,

That is my favorite prayer. It is in my signature on SpineKids!!!

You didn't answer my question.


Melissa

[gerbo]

Melissa, That was a short night for you.

Which of the 2 prayers?? :rolleyes:

Sloppy refers to the kind of story where predictable romantic emotional tearjerking events take place, and which make you weep when you feel vulnerable......

gerbo

[Celia]

I have mentioned every time that I'm there that Rachel wears the brace about 23 hours a day. No one has ever said that the two breaks of 2 hours are necessary. Dr. Coillard and Dr. Rivard have both heard me mention how we wear the brace.


At the one month follow up last year, Dr. Coillard asked me how many hours Deirdre was wearing the brace and I said 23 hrs/day and she was delighted! At the clinic appointment two weeks ago one of the first things Dr. Rivard asked me was whether Deirdre was wearing the brace 23 hrs/ day and I said yes and he didn't say that I should do anything differently. I was just wondering why the Spinecorporation website site recommends 2 hour breaks in the morning and afternoon and if this is relevant.

[MATJESNIC]

Gerbo,

Of course it is the real prayer that is in my signature. Yours is funny. But I really do love the Serenity Prayer. I say it to Nicole all the time because she always wants to have control over things that she can't.

I guess you were talking about Romance Novels.

You are right. I only had 3 hours sleep. There is a lot I should be doing, but sometimes I use NSF to avoid.


Melissa

[Snoopy]

Gerbo,

I don't read romance novels, but any of the Chicken Soup for the Soul books are a good read if you need a good cry. There have been times through this journey with Scoliosis in which I needed to cry, but just couldn't. I sometimes feel like if I start, I'll never stop!

My youngest daughter is practicing on her drum set as I type this. Maybe I need to take up the drums to take my frustration out on the drums! Who cares if the neighbors don't like the noise!

Melissa, get some sleep! You won't be any good to Nicole or the rest of your family if you don't take care of yourself! Take a long hot bubble bath tonight, maybe a glass of wine (ok, a strong mixed drink) and go to bed.

Mary Lou

[mrf]

Hi all. I'm fairly new to the forum. My 12 year old daughter was recently diagnozed with a 24-25% curviture and has been placed in a TSLO brace and just started wearring it over the weekend. While she is getting used to it ( the beginning was a nightmare - see my posts in the parent forum), I am concerned that it may not be the best treatment both physically and emotionally. I have been reviewing this thread, doing research and spoken to Dr. Gary Deutchman in New York and am setting up an appointment to see him. Mind you when I asked my daughters orthopedist (who happens to be one of the heads at Columbia Hospital in New York) he responded that he was aware of Spinecor but did think my daughter was a candidate due to her being overweight. He neither opined one way or the other about the Spinecor brace itself - but then again I did not push him into a corner about it - which I will before going forward with the Spinecor. Dr Deutchman was not so concerned with her weight issues.

I have two questions for those that have chosen Spinecor:
1 - How did you come to terms with your orthopedist or diagnosing physician who may not have been in favor of Spinecor?
2 - Did anyone's insurance plan cover the Spinecor brace or treating physician? While I won't let money get it the way, it would be nice if I could get my hmo to cover it.

Thanks for your thoughts.

[Celia]

Hi,

Apparently weight is not an issue with the spinecor brace as it is with other rigid braces that rely on the three point pressure system and hence weight would come into play and I think some studies have shown that overweight children do poorly with rigid bracing.

The local ortho was very receptive to our decision to travel to Montreal and felt that the spinecor was not much better than rigid bracing. My daughter was only five years old when she went into the spinecor brace and one of the youngest so I guess there was a bit of apprehension on everyone's part including the spinecor doctors as to how she would fare. Anyway....it's been one year and we're doing O.K. *two big thumbs up* :)

As for insurance, I think you'll have a harder time convincing insurance companies that you should get reimbursed if you see a chiropractor rather than a medical doctor. Our insurance company reimbursed us for the cost of the brace but we needed a letter from dr. Rivard stating that it was medically necessary.

[gerbo]

our initial spinal surgeon was not particularly receptive to anything we suggested or asked. Eventually we concluded that his treatment did not meet our and our daughters needs and that there was better treatment available, so we had no choice than to make our own arrangements, i.e. switch treatmentcentre.

Never regretted it once.......

[cherylplinder]

Melissa,
I'm glad I'm not the only one that uses NSF to avoid things. I do feel that since the support here has helped me so much, I least I am doing something constructive by supporting others :) . I am always accused of looking on the bright side. :) :) :D
When we get through all this, if not before, we will have to meet and have some champagne!
Hugs
Cheryl

[mrf]

Does anyone have any experience with Dr. Paul D. Sponseller at Johns Hopkins in Baltimore, Maryland?

[christine2]

Hi Mrf

My daughter (6 yrs old) has been in spinecor for approx. 8 weeks and we are
having fantastic results.

to answer your questions

Our pediatrician was actually angy with me for not following her recomendation to follow the orthos advice that she recommended. It made me feel like a bad mother. After she heard the results of the spinecor brace she changed her tune.


We were reinbursed up to our deductable for durable medical (I think it was
$ 750 or $800.) all x rays were covered as well as O.V. I agree that you will have a bettewr chance at coverage if you see an ortho. Montreal was considerable less expensive than New York.

Christine

[Celia]

Mrf

Another thing to keep in mind about the spinecor brace is that it's not replaced as frequently as rigid braces. I don't know if this is the case with everyone else but my daughter might be wearing the same brace for another year or so....maybe longer if she doesn't outgrow it. I got the impression at the last clinic appointment that they discourage switching braces midway through treatment and prefer that children wear the same brace, provided it fits. As far as I know rigid braces are replaced frequently - every six months ?? We have replaced a few pieces like the crotch straps and we got an extra set of elastic bands which I found essential when the other set is washed.

[MATJESNIC]

Regarding what to do when the orthopedics don't support your decision to use Spinecor

We met with a very nice orthopedic at Shriner's who told us that no matter what happens with Nicole and the Spinecor, we should not blame ourselves. We chose what we felt was the best brace for her and if it didn't work, we should not waste time feeling guilty. I thought that was a very good statement.

I think deep down inside, many of these orthopedics don't believe that hard bracing will work anyway, so the fact that we are trying something different doesn't make them feel that we are ruining our kids' chances of avoiding surgery.

When Nicole was prescribed the Boston, I know that the orthopedic was thinking that she will probably need surgery eventually. So in that regard, what are we really losing by trying the Spinecor.

Sorry for rambling. Not sure if what I wrote even made much sense to y'all.

Melissa

[mrf]

Has anyone gone to Montreal to be fitted and then continue treatment with your "local" Spinecor doctor/Chiro?


MATJESNIC/Melissa,

Your daughter, Nicole is being treated by Dr. Deutchman in New York? Are you from the area? Did you consider going to Montreal to see Dr. Rivard? What are your thoughts on Dr Deutchman? If you would prefer, private e-mail is fine. I have an appointment for my daughter with Dr Deutchman for next week but am seriously considering traveling to Montreal and have my daughter fitted by Dr Rivard if we decide to go with the Spinecor.

[mrf]

I see that most people on this forum are very much in favor of Spinecor - or at least optimistic about it. Does anyone have any negative or neutral responses to the Spinecor brace? I don't mean to play "devils advocate" but I'd like to hear both sides. I know one concern is the lack of significant long term results data. Anything else?

[Christina_in_NC]

Melissa,
so you met with a doctor at Shriners? What led you from them to New York?
We were going to go to Erie - everyone on the phone there were extremely helpful - but Baltimore is half the distance and not having to deal with driving in winter weather is a big plus. We are looking forward to Dr. Sponsellor as we have heard such great things about him, but I keep wondering about Montreal or a chiro.
I feel good now about our decision to go to Baltimore, but I do wonder what factors other people consider that takes them from one clinic to another.
Christina

[gerbo]

I see that most people on this forum are very much in favor of Spinecor - or at least optimistic about it. Does anyone have any negative or neutral responses to the Spinecor brace? I don't mean to play "devils advocate" but I'd like to hear both sides. I know one concern is the lack of significant long term results data. Anything else?

actually, the quality of the long term data is very good, i.e., there is a large group of spinecor patients who have been followed for many years and there progression or otherwise closely monitored. This beats anything I have seen with regards to longterm follow up of any cohort of boston braced patients. Also, the outcomes in that large group are s o much better than any outcome I have seen in a hardbrace group, with the basic difference being that spinecor patients keep most of their initial correction, whilst hard braced patients fall back to their curve before bracing started.

The big problem remains, and if you have studied the whole spinecor thread, you would have come across this, that there is only one big study, which is ongoing, and that it is conducted by the actual "inventors" of the brace who have "competing interests", either financial or in professional reputation.

That is the one bit of "DOUBT" you just have to accept, a doubt which gets less and less as time goes on and we see our daughter (s) improving or remaining stable, and more than anything else, being happy with their treatment and leading a relatively unrestricted life. Look at various forums and see how many young people in hard braces just end up with surgery anyway and how their lives are being affected by their treatment, it is clear, whatever treatment you choose, there is no garantee for succes. In the end you just weigh up all relevant factors and go with what feels best to you and your child. If surgery is the eventual outcome; so be it, at least you've tried your best. (and I keep on saying; surgery tends to be very succesful and manageable these days)

[gerbo]

ofcourse, the other bit of doubt is the "dr Weiss" study, an issue which i raised with the mr mills of spinecor, see post nr 8 of this thread (that's a long time ago) for my query and his reply

[mrf]

I actually asked Dr Rivard about the Weiss study and he told me several things:

1 - the study was only with 12 patients
2 - When he and Dr Coillard went to Germany to meet with Drs Weiss and instruct them on the proper fiting of the SPinecor they did not agree with Dr Rivard's directions as to how to fit the brace. He said that they insisted on fitting the brace as a three point brace which, according to Dr Rivard, is not the correct way to do it. Dr Rivard said that he trained their orthotists to do it the correct way but that when they went back to Germany, they were not fitting the Spinecor correctly.
3 - He did have follow-up consultations with Drs Weiss and that when he (Dr Rivard) showed his additional study results, Drs Weiss agreed with Dr Rivard but that was after their study was already out there.

[gerbo]

interesting....... , shame dr weiss never placed or published any correction, as his "study" is now in the public domain and being quoted. Just shows how much dodgy science is going on.....

[MATJESNIC]

Christina,

We were going to Shriner's in Phila because they are orthopedics and our Spinecor Doctor in N.Y. is a chiro. We didn't feel comfortable only going to a chiro. We wanted Nicole to be monitored at Shriner's because if she needs the spinal fusion, that is most likely where she will have it. Don't misunderstand, nobody at Shriner's in Phila is supporting our decision to go with Spinecor.

Nobody led us to N.Y. We saw the site, talked to the chiro there and began treatment there. It was the closest center to us and the chiro has extensive experience with scoliosis.

What led us to Montreal was to get a 2nd opinion when Nicole developed a 2nd curve. The orthos there made some changes to the way Nicole wore her brace and we decided to just go there from now on.

Melissa

[gerbo]

melissa, did they comment at all on the way dr D had applied the spinecor, do you feel what they did was substantially different?

have you slept a bit better??

[MATJESNIC]

Gerbo,

Thanks for asking about the sleep issue. It was just that one night that I couldn't sleep. Not sure why.

They didn't comment on the way she was braced. They made a change by wrapping one of the straps around the top of her shoulders. It is hard to explain. It was obviously a difference of opinion. We just showed them how she was wearing it and asked if they would do anything differently. Boom, boom, boom, it was like someone doing origami, Dr. Coillard walked over to Nicole and did her fancy hand work and voila, a different way of wearing it. It was one change with one of the straps. We still don't know how Nicole is doing in it. We will know Nov or Dec.

Remember, Nicole only had one real curve in the beginning. So the way she was braced for 6 months was based on that curve. Then her compensating curve became a big, real curve. That is when we wondered if she needed a change. The Docs in Montreal thought she did.

Did you know there are 10 ways you can wear a Spinecor?


Melissa

[Carly's Mom]

Has anyone gone to Dr. Smouse in Sugar Land, Texas? We are not sure where to go. There or to Atlanta Georgia. Our daughter Carly is 14 and has a 26 degree. She has been wearing the Boston brace for 9 months and it has been terrible. She has gotten worse by 4 degrees. Very uncomforatable and HOT!. We are in Fort Worth, Texas

[MATJESNIC]

Hi Carly's Mom,

I don't blame you for wanting to find an alternative brace. But don't let the 4 degrees influence that decision. There is always a margin of error. Four degrees falls within that.

Good luck with finding the right Spinecor Doctor. I'm sorry I don't know anything about either of those Doctors except that 2 girls on SpineKids go to the one in Georgia.


Melissa

[Carly's Mom]

Thanks Melissa,

How is your daughter doing with her brace? Do you also see an Orthopedist? I am not sure yet if ours will write a prescription for the Spinecor brace. We sure hope so. Do you still see Dr. Deutchman?

[MATJESNIC]

Carly's Mom,

We see the orthopedics in Montreal for our Spinecor. We have also seen a few orthopedics at Shriner's in Phila because that is where we would go if Nicole has to have surgery. We don't know how Nicole is doing in her brace. Unfortunately we didn't catch the curves when they were little. You are so ahead of the game in that area. Nicole has been on the verge of surgery since her diagnosis, so we really need a miracle here. Even the doctors in Montreal don't expect anything more than a five degree correction out of brace. And that would be the best-case scenario. Next best would be staying the same. The worst would be getting any worse and needing surgery.
Did you say what your daughter's risser is?

Melissa

[gallathea]

Hi Melissa:

I just read your post on the Philly docs being anti-Spinecor. I'm curious about this since we're going to see Dr. Betz in a few weeks. Our six-year-old has been in the Spinecor for six weeks (we go to Montreal for her follow-up on Monday), but we wanted to find out more about the vertebral stapling in case her curve just gets worse. Did you see Dr. Betz? From everything I've read about him from other posts, people really like him. But I'm curious to know why he'd be against Spinecor. I guess I assumed he'd be more progressive.
Any thoughts? I want to be prepared.

Caroline

[cherylplinder]

I can't wait to hear the results of your followup. Your initial correction was amazing!
Cheryl

[MATJESNIC]

Caroline,

We didn't get to see Dr. Betz. But let me say that the Doctors were especially not supportive of Spinecor specifically for Nicole. She had a curve of 37 and from what they had read, Spinecor works mostly for small curves. With that being said, the Doctors, in general felt that there was not enough research on Spinecor. Of course, they are not going to prescribe something they don't know enough about. But if you go in there and show them that Spinecor has worked well for your daughter so far, then maybe they would have an open mind. None of the Doctors ever told us to please get our child out of that Spinecor because we are going to mess up her scoliosis. To be honest, I believe that most of the orthopedics look at my daughter (diagnosed at 11 with a big curve) and think that she will probably need surgery anyway.

Good luck to you.

Melissa

[Celia]

Melissa,

I totally agree with you on the perception by orthopaedic surgeons that rigid bracing is ineffective. The few times that I've read about a "success" the parents will often describe the doctor's reaction as one of amazement and disbelief! I don't know why this is, it could be they are so removed from bracing these children and the job now rests solely with the orthotist. In the old days they worked closely with orthotists to ensure that the brace fit properly and I think there were more success stories. Obviously they feel their only role is a surgical one.

[LindaRacine]

Melissa,

I totally agree with you on the perception by orthopaedic surgeons that rigid bracing is ineffective.
You're definitely getting a different impression than I am.

--Linda

[Celia]

O.k. Linda what gives you a different impression ? :)

[MATJESNIC]

Celia and Linda,

I was actually talking about Nicole in particular. I get the feeling that when an orthopedic sees an 11-year old with a risser 0 and a 37-40 degree curve, s/he thinks "90% chance this child will eventually need surgery no matter what we do." If she had a higher risser or a lower curve, then that might not be the case. There are some orthopedics who don't believe in bracing at all. There are a lot of opinions out there.
All the orthopedics in Phila who saw Nicole wanted us to put her in a hard brace.

Melissa

[LindaRacine]

Hi Melissa...

Scoliosis specialists have the responsibility of providing cost effective care to as many people as possible. Putting a kid who has a significant chance of requiring surgery into a brace, is not very cost effective... especially since compliance is such an issue.

I routinely talk to parents whose kids are being effectively braced with rigid braces. I've followed some "kids" for more than 15 years, whose curves never progressed to the point where they've needed surgery. Whether we're talking about rigid braces, or the Spinecor brace, obviously, the key is catching them at the right time.

Regards,
Linda

[LindaRacine]

O.k. Linda what gives you a different impression ? :)
Well, I routinely talk to parents whose kids have been put into a Boston brace, and when I attend UCSF scoliosis clinics, I see kids in Boston braces all of the time.

As I mentioned above, scoliosis specialists have to do what is right for the community as a whole. I think what you might be observing are cases where the specialist doesn't feel that a brace is appropriate, or that the child will be compliant.

--Linda

[Snoopy]

Celia,

I totally disagree with your comment about surgeons believing their only role is a surgical one. Like Melissa's daughter, my daughter was diagnosed with a curve that was already 36* and she too was a Risser 0. I took Jamie to FIVE different surgeons at three different hospitals and every one of them recommended a hard brace for her to try to avoid surgery! Jamie's orthotist and surgeon worked very closely together. We'd go downstairs to the orthotist and then go upstairs to see the surgeon. After her x-rays and exam, the orthotist would come into the room and we as a team-Jamie, surgeon, orthotist and myself--would decide what adjustments/changes we would make. We'd go back down to the orthotist's office make the changes, and then go back upstairs to the surgeon and this went on at each appointment until everyone was satisfied.

Had Jamie worn her brace as prescribed, could we have avoided surgery? I doubt it. When she was diagnosed, her Kyphosis was already at a point where we could have considered surgery but because she was only a Risser 0, thankfully they didn't want to do surgery until she was done growing. Had I known about Spinecor and put her in it, would we have avoided surgery? Probably not.

Mary Lou

[Snoopy]

Linda,

Any suggestions on how to catch kids earlier? Had my daughter and Melissa's daughter been caught earlier, who knows what their outcomes would have been. For my daughter, even if her school did routine Scoliosis screens, I doubt they would have caughter her Kyphosis. Are these school nurses even checking for Kyphosis?

We need to figure out a way to inform more people of the signs of Scoliosis-uneven shoulders, uneven waist band of their shorts, uneven hem on skirts--so maybe we can catch it at an earlier stage.

Mary Lou

[mariaf]

Mary Lou -

I agree with your view - mainly because everything you said mirrors my personal experience with orthopedic surgeons.

While I am not a huge fan of rigid bracing, it obviously does work in CERTAIN situations. More importantly, I do see surgeons routinely checking braces after the orthotist prepares them. David's former orthopedic surgeon definitely believed bracing had its place in her practice (I met several girls who were braced and never needed surgery - probably, as Linda said, these curves were caught at the right time among other things). She worked hand-in-hand with the orthotist, back and forth, until the brace was fitted exactly how they wanted it, the surgeon having the final say. This probably was what held David's curve.

I do agree that a large number of patients who are braced (hard brace, spinecor, etc.) will end up needing surgery - and there are all the other issues to deal with regarding brace wear - but from what I have seen I simply don't agree that orthopedic surgeons are against ridig bracing by any means.

[gerbo]

I suppose our opinions are based on our own experiences, which will vary widely. My personal experience in the UK was that consultants were not at all involved in the bracing, and did not particularly seemed to be interested as they seemed to think that it wouldn't make an awful lot of difference anyway.

I suppose this can than become a bit of a self-fullfilling prophecy as lack of "trying to get the best out of bracing" and lack of enthousiasm (to fire the patients motivation to wear the damned thing for 23 hours) is bound to lead to relative failure.

even our current "spinecorconsultant" doesn't seem to believe in anything to do with bracing and as celia suggests, it is really the orthotist who takes all responsibility. we do leave the hospital at times wondering why we still see the consultant at all........ (but i am sure he will be wonderful once he can take up his scalpel and start cutting......)

still, i am sure there are many consultants who are totally different and very positive re bracing, haven't come across many of those though

[LindaRacine]

Linda,
Are these school nurses even checking for Kyphosis?

Yes, when I sat through training, looking for kyphosis curves was included.

As to how more kids can be caught, I really have no idea. It looks like many U.S. states may be moving away from screening as a way to reduce budgets.

The good news is that there will hopefully be gene therapy to actually cure scoliosis in our lifetime.

--Linda

[gerbo]

The good news is that there will hopefully be gene therapy to actually cure scoliosis in our lifetime

that sounds ever so optimistic

[mrf]

I had thought more schools were performing the screening. My daughter's curve was first detected by the school nurse during a regular screening - not her pediatrician who had seen her a month before!!

I am dismayed by the number of orhopedists I have spoken with on the East Coast - even those who are on the Spinecor list - who are dismissing it as a form of treatment. What I have been told is that IF the particular patient is compliant with the TLSO then a switch to the Spinecor should not be made. A huge disappointment in that even with the additional positive findings/benefits with the Spinecor, most general orthopedists are still sticking with the TLSO. If we decide to go with the Spinecor for our daughter, I feel as if we are making the decision without any medical support.

[mrf]

Gerbo - Lost your last response. Can you repost?

[Celia]

The main reason I chose to go with the Spinecor brace and Drs Rivard and Coillard in particular was because they have a *real* interest in making this whole bracing thing work. They are the inventors of this brace and I knew that my daughter would get 110 % from them. I read numerous studies and accounts before hand that pointed to dismal failure with rigid bracing be it non compliance or uncaring doctors /orthotists. I only have two kids in this world and Deirdre is my only daughter and there were/are no second chances for her. She was diagnosed with one of the most aggressive forms of scoliosis – I had to learn very quickly. I was very fortunate not to have ended up with a schmuck ortho right from the get go because I have read *so many* horror stories when it comes to infantile scoliosis. My daughter could easily have been one of the many young children now facing repeated surgeries. When I read accounts of young babies whose curves have progressed within a matter of months to unmanageable proportions due to *gross negligence* on the part of some of these doctors I think to myself: there but by the grace of God go I.

[gerbo]

Gerbo - Lost your last response. Can you repost

I pulled it as on reflection I wasn't sure whether you wanted the kind of comment I was going to give However, now you are asking for it; the big question could be; what is having a TLSO brace supported by your consultant going to do for your daughter. Again, with a good correction and willingness to wear it, nothing wrong in using it, but realise that evidence for succes is not fantastic, although there is a fair amount of it, contrary to spinecor evidence, of which there is less, but what there is looks good. Bit of a dilemma really and in the end you need to make decisions based on available evidence plus your experience with either system. If you get a good initial correction with spinecor, and your daughter is willing to wear it, I think you can be pretty sure you'll do at least as well as with TSLO No garantees though but nobody wil give you a garantee, whatever you do, still my daughter has always been grateful for our choice, and a year onwards, we still have had noreason to regret

[mrf]

Most disturbing for us is that we have been told not to expect any correction the the TLSO. While this is based on our daughters specific situation, how do I balance that with Spinecor providers telling me we will surely have a correction with Spinecor? I know there are no guarantees.

We have come a long way in two weeks of wearing the TLSO. We are up to 16 hours a day and while she has yet to wear it to school, she has worn it to friend's houses and even told her best friend about it (although still not discussing with siblings, extended family or schoolmates). I must say, my wife and I are both shocked at her compliance! Which brings us to the major issue of the Spinecor. As I see it, the major advantage of the Spinecor is the willingness to comply with wearing the brace. If she refused to wear the TLSO, the Spinecor would be a no- brainer. Her compliance with the TLSO makes the decision to pursue the Spinecor much more difficult.

[MATJESNIC]

Hi Everyone,

I see three major benefits with the Spinecor. One is the willingness to wear it. Two is the positive affect it has on the body regarding muscles, lung capacity, etc. Three is the possibility for correction. When you have a curve that is borderline surgery, you desperately want some correction, not just a holding of the curve.

With that being said, I want to clarify something regarding early detection.

I did have early detection for Nicole. When Nicole was 10 1/2 her regular doctor noticed a small curve. She told me to come back in 6 months. I didn't take her back in 6 months. Her curve could have been a 20 at that point. Her doctor should have sent her to an ortho or sent her for an x-ray. "Come back in 6 months " was not an alarming statement to me. When I was Nicole's age, they thought they saw a curve and sent me for x-rays. Nothing came of it. So that was my thinking. I spent that year taking care of my 3 kids, working, and taking Nicole to numerous doctor appointments for bronchitis and other illnesses. She was sick a lot that year. Nobody ever asked to see her back. I never thought to ask them to look. It totally flew out of my head. Which is strange because I usually worry about everything. The one time I decide to be laid-back, something bad happens. Now a thousand other Parents could have been in my shoes, and a year later, their kids' curves would have still been tiny.

A year later at her next physical, the doctor saw a bad curve and would not let me leave the office until I called the orthopedic.
I have told this story many times. I just want to stress that Nicole could have been one of the lucky ones because her doctor did catch it early.
I dropped the ball. We can't go back in time. Her outcome could have been different. We will never know.

Sorry for the long post.

Melissa

[christine2]

Hi Melissa

I think what needs to come out of what you have been through is that waiting and watching should not be an option. If your Doc had said go get X rays now you would have. There are many parents that follow doctors wait and watch suggestions and as we all know scoliosis is unpredictable. We need to let parents know how important it is to be pro active!!!

Early detection is also very important my daughter was diognosed at 6 years old and I hope to god that we can reverse the curve (so far so good) My daughters pediatrician is checking all kids well or sick at every O.V. I wish we could get the message out.

Christine

[LindaRacine]

Again, with a good correction and willingness to wear it, nothing wrong in using it, but realise that evidence for succes is not fantastic, although there is a fair amount of it, contrary to spinecor evidence, of which there is less, but what there is looks good.
Hi Gerbo...

I think we've had this discussion before, but there is plenty of evidence that TLSO braces do, in fact, work for the majority of patients. Here are just a few:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16909249&query_hl=50&itool=pubmed_DocSum
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14501917&dopt=Abstract

Regards,
Linda

[Snoopy]

Melissa,

I'm sorry your doctor wasn't insistant about sending you for x-rays right away. Had you known then what you know now, I'm sure you would have insisted on x-rays immediately.

Mary Lou

[christine2]

Melissa

I want to make sure that you know how helpfull you have been to all of us. I have learned a ton from you about scoliosis. If it were not for you, my daughter would not be in the spinecor and her quality of life would have been greatly comprimised. I am not sure of the outcome. She was diognosed with a 33 degree curve at 6 years old (big curve so young) But I do know one thing If she ends up having surgery her muscles and lungs will be strong which will better handle recovery.

Thank you
Christine

[gerbo]

I think we've had this discussion before, but there is plenty of evidence that TLSO braces do, in fact, work for the majority of patients. Here are just a few:

sorry Linda, I agree, but must be more specific, I agree that the evidence is that if well applied and consistently worn, a TSLO is often succesful in stopping a curve from getting worse, but doesn't tend to give much improvement from the starting position. The available evidence from the spinecor suggest that with the spinecor the initially achieved correction is maintained after finishing wearing the brace,

I do know that there is only one big spinecorstudy, which is a weakness. However, in practice, on this and other forums, I must say that ihardly ever hear a TLSO succes story, whilst I do hear of spinecorsuccesses, which could suggest that spinecor results are easier repeated in "real life", whilst outside controlled studies TLSO-succes is harder to achieve. Could this be because a good, well correcting, TLSO is actually quite hard to manufacture, and because in practice many young people are unwilling to put in the wearing time required???

[LindaRacine]

Gerbo...

Anecdotal evidence is fine, but doesn't really tell the story. The scoliosis specialists that I've worked with here in the U.S. tell parents that if they don't get at least 50% initial in-brace correction, there is not great evidence that the brace will work long term. Of all of the kids I've known to be braced, I can only think of handful that didn't get at least 50% in-brace correction.

I can almost guarantee that, over time, the Spinecor will be found to get the same or worse results than a TLSO, which usually means that the curves return to within 10 degrees of the initial measurement before bracing. The only thing that might improve Spinecor results over TLSOs is compliance (which I agree is a huge issue).

I am definitely not anti-Spinecor. I think it's a great innovation, and hope that results can be duplicated outside of Canada, and that the results hold up over time. The only concern I have (other than the lack of too little data) is that letting chiropractors prescribe these braces will actually destroy the reputation of the brace, resulting in insurance companies not allowing reimbursement for it. I'd also like to see the price drop some. I'm thinking that the margin has to be huge.

As with any new treatment, it would be malpractice for all scoliosis specialists to jump on the bandwagon before more studies have been published and results can be duplicated in other centers. Until then, specialists are going to stick with what they know to work.

--Linda

[cherylplinder]

Linda,
Rachel was seen by Dr. Sanders at Erie in April. Diagnosed at 7 with an 18T/17L curve, she remained stable until last year, at which time her thoracic curve progressed to 38 degrees. In April, when Dr. Sanders saw her, she was 10 with a 38T/27L curve. Her adolescent growth spurt had not even begun. He said that she had a 100% chance of surgery with ANY brace. Celia recently posted an article on juvenile supported his opinion.
Nonetheless, Rachel has grown about 3 inches since being put in the Spinecor in January, and her curve contines to diminish with each visit. They don't give me any guarantees, but if this continues, her prognosis is excellent. I hope our success continues. At some point her curve, instead of continuing to diminish, will probably just stabilize. And that, I know, is if we are really blessed.
She was unable to function normally before this brace, in frequent pain. From the time she was put in the brace, her pain stopped. At first she still hurt when she was out of brace. Now she doesn't.
Had she been brace at 18T/17L, I don't think she would have a curve at all. The success stories on this forum alone are impressive.
It's food for thought.
With the cost of one surgery at anywhere from 100,000 to 250,000 dollars, even in terms of dollars and cents, using our healthcare dollars wisely, is there really a place for observation of a juvenile curve or risser 0 adolescent curve that is progressing rapidly or has reached 17 degrees, I think the minimum for Spinecor in AIS?
Even in terms of dollars and cents, it doesn't make sense to me.
Bracing at that time gives some room and time for observation in brace. There would be little liability in that. The brace is FDA approved. I firmly believe a more proactive approach is in order.

[Celia]

The scoliosis specialists that I've worked with here in the U.S. tell parents that if they don't get at least 50% initial in-brace correction, there is not great evidence that the brace will work long term. Of all of the kids I've known to be braced, I can only think of handful that didn't get at least 50% in-brace correction.

Linda,

Sorry to cut in, I know this was addressed to Gerbo Even if these children get 50% in-brace correction with rigid bracing, the post brace curve will not be much different than what it started out with. In fact, I read a study which showed that children who achieved *some* correction after many years of bracing ended up with the same curve they started out with - is this what you mean by success??? The study didn't even touch upon what happened to these children as they aged - most likely their curves continued to deteriorate.

Considering that most doctors don't start bracing curves until they're past 30 degrees, it stands to reason that most of them will end up with surgery anyway. I agree with your views on chiropractors and I find it puzzling why the results at Ste. Justine can't be duplicated in the U.S. but everywhere else in the world.

Who is the ideal bracing candidate ? Give me your views on curve size and age. :)

[LindaRacine]

Celia...

It remains to be seen that Spinecor patients will remain permanently corrected. I personally don't believe that is the case. The reason that curves return to their original severity in most cases is that the vertebrae and discs are wedged. Spinecor does nothing to change that.

I don't pretend to be a medical professional, but I do read all the research. If you want to know who the ideal brace candidate is, you should address your question to a real professional.

I did not mean to start another debate. I just wanted those reading this forum to understand that there has been considerable success using TLSO braces.

--Linda

[scoliocolorado]

I am glad that I read this message about the possibility that the spinecor brace patients may not have permanent correction in the spine. I was looking into this brace, but now that I read about this, I don't know if I should even pursue it.

[LindaRacine]

I am glad that I read this message about the possibility that the spinecor brace patients may not have permanent correction in the spine. I was looking into this brace, but now that I read about this, I don't know if I should even pursue it.
You should discuss this with your scoliosis specialist.

[Celia]

I don't pretend to be a medical professional, but I do read all the research. If you want to know who the ideal brace candidate is, you should address your question to a real professional.


I seem to recall a previous discussion where you stated curves shouldn't be braced until they're past 30 degrees and that bracing *all* children with mild scoliosis would put an enormous strain on the health care system and bankrupt insurances. :D

We all have to choose our own path. I'm glad for the choices.

[gerbo]

Anecdotal evidence is fine, but doesn't really tell the story, but neither does "research" necessarily, personally I feel that the combination of the two gives a better indication than either on their own.


The scoliosis specialists that I've worked with here in the U.S. tell parents that if they don't get at least 50% initial in-brace correction, there is not great evidence that the brace will work long term. i wrote to a few american specialists early on (john emans, marc asher) and this was exactly the message i got. Based on this I did not worry toomuch about switching to the spinecor, as we were only getting 25% correction with the TLSO, and our specialists were not particularly bothered about it. If we would have been close to our 50 % correction I am not sure what i would have done


I can almost guarantee that, over time, the Spinecor will be found to get the same or worse results than a TLSO, which usually means that the curves return to within 10 degrees of the initial measurement before bracing

The current available evidence (including still to be published long term outcomes) suggest otherwise.


The only concern I have (other than the lack of too little data) is that letting chiropractors prescribe these braces will actually destroy the reputation of the brace,

agree fully (but we do have to be carefull not to blindly equate chiropracter with bad practice)


The reason that curves return to their original severity in most cases is that the vertebrae and discs are wedged. Spinecor does nothing to change that.

although that must be true for longstanding curves, i believe that specially initially most of the curve is determined by the behaviour of muscles, ligaments and the effect of gravity and posture, if you correct at that earlier stage before wedging etc has taken place, you might have a good chance of some permanent correction


did not mean to start another debate

do start a debate as it is good to look at the different angles now and again, and your views and opinions (and knowledge of research) are always very helpful

[cherylplinder]

Dr. Rivard did tell me that remodeling of the vertebrae can occur. I asked him specifically at our initial fitting.

[mrf]

Cheryl,

Can you expound on what remodeling of the vertebrae is and what Dr. Rivard told you?

Thanks.

[mrf]

I can almost guarantee that, over time, the Spinecor will be found to get the same or worse results than a TLSO, which usually means that the curves return to within 10 degrees of the initial measurement before bracing.

--Linda

Linda,

What makes you so sure of this? On what are you basing your "guarantee"?

[cherylplinder]

Well, the technical terminology involves osteoclasts and osteoblasts. These are types of cells in bone. The osteoclasts are constantly breaking down bone and the osteoblasts are constantly building bone, if I understand correctly. This is one reason growth can be a corrective force in scoliosis. I asked Dr. Rivard if it was possible, because of the activity of these cells, for the bone to remodel and the structural deformity of the bone to be corrected. He said yes.
He may have said more, but I can't remember if he did. I remember how encouraging I found his answer. I remember that I specifically said what I stated above.
It makes sense. There is a case study on the spinecorporation website of a 10 year old boy with a 30 degree curve that was corrected to 0 degrees.

[LindaRacine]

Hi...

If Cheryl is correct, than there probably isn't any difference between the Spinecor brace and a TLSO (or, for that matter, other braces) if all were applied early enough. Unfortunately, as I've stated before, I'm definitely partial to socially responsible medicine. And, because of that, could not support putting every child with a 10-20 degree curve into a brace, at least one paid for by insurance or by the government.

Doctors are hopefully close to knowing which curves will progress and which won't, which would make this a moot debate.

Regards,
Linda

[MATJESNIC]

We just got our appt. at St. Justine's. We're going on Dec 13th. Anyone else going around this time?


Melissa

[pat]

Melissa, you got thru! Our appt's November 30th~ pat

[MATJESNIC]

Yes, they called me back. In fact is it possible that Dr. Coillard called me herself. It was kind of hard to understand, but I thought that's what she said. I asked if we could possibly go in Nov but she said they were totally booked. Our appt is in the afternoon, so we will stay over in N.Y. state, an hour from the border. Then we can cross over in the morning. Nicole will miss one day of school and one night of dance classes. As usual, no time for sightseeing. Gotta get back home. I am very anxious about the appt. We will know for sure whether she is having success. Five months will have passed since our last appt. and it will be very telling. I can't wait to find out what her risser is.

Melissa

[Christina_in_NC]

Someone asked who the ideal candidate for Spinecor is - now I can't find that post.
I had spoken with Dr Deutchman - he said ideally Risser 0 to 2, pre-menses, curve 30 degrees or less, and a lower curve is easier than an upper curve, and a single curve better than a double.
That is ideal and gets the best results, that is not to say anything else will not work. Our daughter fits all of that except that we found out that her upper curve is worse than the lower - 36 degrees.
We are still headed to Baltimore and really hope to get SpineCor as we agree with Melissa about lung capacity and muscle tone issues. Every physical therapist we have talked to says they would use no brace rather than TLSO because of lack of muscle tone that the TLSO may induce.
Still, our surgeon says if she is willing to commit to wearing a brace for 23 hours, he would go with the TLSO because it is the brace he is familiar with. He did not object to our using Spinecor, just said because he did not know anything about it he would put his daughter in TLSO. BUT - if she would not reallistically commit herself to wearing it consistently, he would say go without a brace. He sees too many families having other family issues because of friction caused between parents and child with non-compiance and because of the emotional toll that a TLSO brace can cause. To him, surgery is just not that scary and he would chance that rather than risk emotional pain for several years and then face the possibilty of surgery anyhow after all that.
Christina

[Celia]

Hi...

If Cheryl is correct, than there probably isn't any difference between the Spinecor brace and a TLSO (or, for that matter, other braces) if all were applied early enough.


That's a good point! I never thought of it that way. I wonder if there are any studies which show that rigid bracing actually corrects low curves because the consensus thinking appears to be that rigid bracing will not correct but just hold the curve. The study I've seen on the Spinecor appears to show that low curves can actually resolve over time and even after weaning, small curves will continue to improve. I don't know how many children fall into this category but it's very encouraging to say the least.

[Celia]

Christina,

We just posted at the same time! I can't believe the ortho stated that your daughter shouldn't wear any support if she can't tolerate the TLSO!!!! :mad:

[mrf]

Still, our surgeon says if she is willing to commit to wearing a brace for 23 hours, he would go with the TLSO because it is the brace he is familiar with.
Christina

Christina,

That's exactly what every orthopedic surgeon that I have spoken to said as well - even those that are on the Spinecor list of providers. I find it shocking that wearing the brace for less time (say 15 hours) is looked upon as non-compliant. It seems that the "it's better than nothing" argument does not work with TLSO bracing.

[Mom37]

They all agree in trying bracing, but when reaching above 40, not sure it is worth the effort, as child must suffer bracing with high chance of progression and surgery. My daughter had no medical conditions in past, but now does causing Scoliosis, but will get back to that. I have been to 3 pediatric orthopedic surgeons and 1st said to brace in Boston and come back in 2 years. He was not familiar with Spinecor and recommended no other brace. My daughter was at 30 then. Braced with Spinecor by Dr. D (chiro in NYC.) Correction less than 5 degrees. Spinecor Orthotist and Spinecor rep Andrew Mills did one month and agreed with bracing by Dr. D. At 3 months in Spinecor, second Orthopedic surgeon (Shriners in Erie, PA) braces both Spinecor and Boston, and said my daughters curves progressing quickly and felt no brace would hold her curve. He said Spinecor as good as any and it wouldn't hurt to continue, but he said surgery was eventual. Third Opinion Scottish Rite in Dallas, TX doesn't endorse Spinecor, but both Orthotist and Doctor was interested as hadn't seen one, but hospital had looked at and study didn't have enough data for them to yet support. Opinion that curve, now in upper 40's may not hold with Boston, and eventual surgery. Since she had a high curve MRI was ordered for the first time, and medical conditions caused Scoliosis, so we have to attend to that first. She will have Chiari I surgery Dec 4th after 2 pediatric neurosurgeon opinions. Upon reviewing first Orthopedic notes when sending to othe doctors, he added in notes high progression likely, so he was just trying, but didn't seem convinced either on paper. We are still using Spinecor, as won't hurt, and still believe that Spinecor was best option for compliance and worry with hard braces on muscle atrophy. With her Scoliosis not being being ideopathic, (Chiari I, Syrinx, Syringomyelia, Hydromylia)both Neurosurgeons believe that that is the cause for high progression and she may still need fusion eventually, but advised to continue to see Orthopedic Surgeon, and use brace. Don't know if this helps anyone, but thought it may help in the discussion.

[Celia]

Melissa,

It's quite possible you spoke with Dr. Coillard directly. The few times I've phoned, I either get Dr. Coillard or sometimes even Dr. Rivard. I love the fact that they are so approachable and you can ask questions and have peace of mind. They are so down to earth. I just love them *wipes a tear* :D


Mom37,

Good luck with the surgery in December! I know a few parents whose children have had the procedure however their children were much younger and the curves corrected somewhat after the decompression.

[Mom37]

D

Mom37,

Good luck with the surgery in December! I know a few parents whose children have had the procedure however their children were much younger and the curves corrected somewhat after the decompression.

Thank you for your note! The two pediatric neurosurgeons we went to both are concerned her curve is going to still continue to progress, yet they said it could stop progressing. They did not seem optimistic, but did say that was really something the Orthopedic surgeon would need to give his opinion on. We won't see the orthopedic again until after the Chiari surgery. He was concerned her curve is borderline of being past bracing, but said she is not a fusion surgical candidate yet. We will continue with Spinecor.

[sas1126]

Hi!

I know everyone has questions about the SpineCor brace and I just wanted to lead you to a group of wonderful Chiropractors called Scoliosis Specialists who can answer all your questions and see if the soft brace is appropriate for you/your child.

They have offices in New York, Chicago, LA and Altanta and really take the time with you to discuss if and how the soft brace can benefit your specific case.

Check out their site at www.scoliosisspecialists.com

You can email or call the doctor closest to you. Also there will be an 800 number going up on the site in the very near future!

Best,

Sara

[gerbo]

it's a bit spammy, isn't it???

[christine2]

Has anyone heard from Gallathea (Caroline)

Caroline how was your follow up in Montreal!!!!

Christine

[bizzleber]

How do the spinecor kids deal with gym class at school? Do they change the undershirt after gym? Do they take everything off and shower? Or do they just go on with the day in the brace and same undershirt? (I have a son and am assuming he would wear an undershirt underneath the brace.)

[gallathea]

Hi everyone:

We had our follow-up in Montreal last week and all seems to be going smoothly. We didn't have any out-of-brace x-rays, but her in-brace ones showed that Annabel's upper curve was holding at 20 degrees in-brace (same as the initial correction) and that her lower curve had gone down even further from the initial correction (from 12 to 9). All of this is within the margin of error, of course, so nothing may have really changed, but we're just happy that the brace seems to be doing it's job for now. Overall, we're so relieved that it's such a live-able brace. Annabel rarely complains about it, and it seems to be like a second skin. Incredible.

We're going down to see Dr. Betz next week just to learn more about his vertebral stapling in case she starts to get a lot worse. It's hard to imagine the alternative of trying the TLSO.She started with 28 upper and 18 lower, and she's only six years old, so we're trying to be as aggressive in our research as possible.

I'll keep you posted!
Caroline

[gallathea]

I forgot to add that we also had an MRI done, and all is fine. What a relief.

C

[cherylplinder]

Caroline,
I am so excited for you. Did Dr. Rivard comment on the amount of correction they hoped to achieve in the course of her treatment?
I wish we had started treatment on Rachel when she was first diagnosed at 7. I didn't know about Spinecor then.
Like Melissa says, we can't go back as much as we might like to. We can only move forward. I always remember that God is our healer. He is in control, not statistics. Most of the time, I rest in Him and have peace.
Cheryl

[desheah]

caroline,

i don't post often on this thread, but my almost 5 yr old son is also in the spinecor through the montreal group. i'm happy to hear that your daughter is doing so well in this brace. congratulations.

could you please post after your appointment with dr. betz? i am very curious to hear what he has to say. my husband and i are thinking about making a trip down there next year since we will be visiting friends, and it never hurts to get another opinion

deshea

[MATJESNIC]

Caroline and Deshea,

Glad to hear your little ones are doing well. Someone asked a question about gym. I don't have a son in Spinecor, so it may be different. But my daughter leaves her brace and bodysuit on. It would be too much of a pain to take it off in school.

Melissa

[christine2]

Hi everyone

My daughter wears her spinecor brace for gym, gymnastics and hockey that was Dr. Colliards suggestion

Christine

[gallathea]

Hi Cheryl:

Rivard and Colliard haven't said anything to us about how much correction to hope for. Dr. Colliard said that her spine was a bit "rigid", which may mean that it's less flexible and correctible than we might hope. But as long as it doesn't get a lot worse, then we're happy. Any permanent correction is gravy. I guess a more rigid spine can mean that she's had this for a while, although it was never picked up on in earlier check-ups. When I asked Rivard if that made a difference in Spinecor results (infantile vs. juvenile ideopathic), he said no. But I'm kind of confused as to why not.

C

[sas1126]

Gerbo,

I'm sorry my post came across "Spammy," but I wrote that because I wore the hard brace as a teen and know if I had the option back then I would have tried the soft brace. And more importantly, I would want to go to someone with experience and who is very knowledgable about the technology.

Best - Sara

[pat]

Our daughter wears her brace during P.E. most of the time, sometimes she'll take it off, especially during the summer/hot months; she just slips into the bathroom (P.E. teacher knows she's wearing it) takes it off, does P.E., then puts it right back on after the class. pat

[christine2]

Hi Pat

We have not had to deal with hot weather yet in brace so I would imagine we will do the same. My daughter can not put the brace on herself yet. I am glad you wrote that because it will motivate me to have her learn to do it on her own so she will be prepared!!

Thank you

Christine

[cherylplinder]

Caroline,
I have heard Dr. Coillard imply that larger curves are more rigid. She said that she did not hope to correct Rachel's curve completely. It was too large and had become too rigid. She said had we caught it when it was smaller, it might have been completely correctable.
I just assumed that the bones were more malleable in younger children.
Rachel was diagnosed at 7 with an 18T/17Lcurve. It remained stable for a couple of years and then progressed to 38T/27L in a few months.
I wonder at what point a curve becomes more rigid, or if it is different with each individual? I am assuming it is different for different individuals.
I won't be suprised if your daughter gains some correction over time. I think that Rachel's thoracic curve is still improving. She is definitely more balanced now than she was in August. Her thoracic symmetry has improved even more since then. If they x-rayed her now, I think her in brace x-ray would be better than August.
I worried in August that her shoulders might be more level because the lumbar curve had gotten worse and leveled them out, rather than the thoracic improving. But that was not the case. Both curves had improved in brace. I can only assume that her out of brace measurements are also improved. She looks so different now. Her shoulders were the first thing to level out. Now other parts of her thoracic anatomy are even, also.
I worry sometimes about her lumbar curve. I don't want to over correct the thoracic curve and make the lumbar curve a true curve. Sometimes it looks like the lumbar curve could be progressing. I hope not. I worry about that with every visit, though and so far, I have been wrong. So far, the lumbar curve has not progressed on x-ray.
Cheryl

[gerbo]

I wonder at what point a curve becomes more rigid

I think the obvious answer is that the longer it is in an abnormal position, the more rigid it is likely to become. I would expect that the element of the curve which has been there for years has become quite "set" and will be hard to reverse, whilst a recent deterioration which hasn't produced much in the way of structural changes could still be flexible enough as to be correctible

i wonder even more which structures determine the rigidity. If it purely wedging of vertebrae (which is clearly a long term change), than I would not think there isn't a lot what can be done. Then there are the intervertebral discs (also long term changes), i know their wedging plays a role in making the curve more permanent, but as they are made from softer tissue, would it stillbe possible toi reshape them till some extend?? I kind of "hope" that part of the rigidity of the curve (specially initia;lly) is maintained by thightening of ligaments between the vertebrae on the concave side of the curve. This to me makes sense as ligaments will always adjust to the position of the structures they connect (keep your ankle in plaster long enough and the joint will be totally stiffened up after some months) The good thing would be (if all the previous is correct) that thightened ligaments can be made more flexible by stretching them.

Based on all that I have lisanna regularly laying sideways on (kind of) a gymbal, hoping to "stretch" the presumed tighter ligaments on the concave side, which in return would make the brace more effective......... Whether it works???? Not a clue, but lisanna likes it as she can have her brace off and she gets a massage at the same time

[mrf]

My 12 year old daughter just had her 1 month in TLSO checkup with her ortho. Her in brace curve is 16 (Initial measurement was 25). She's only wearing it 15 hours a day and he wanted 22. He was somewhat ambivalent about the reduction to 16 and said it does not mean she is getting a correction - only that it's holding the curve. he said we will not know anything until we take the brace off after ?? years. We keep bracing until she hits a particular maturity level and then remove the brace with the hope that it holds at the original curve level. He reiterated that the brace is to hold her current curve (25) NOT to correct. Is this what other orthos say as well?

After meeting with Dr Deutchman in New York about Spinecor, we were ready to discuss the Spinecor with the Orthopedist and move on. The ortho was very willing to talk about it and said that while he does prescribe Spinecor to some of his patients (typically those who refuse to wear the TLSO), he still does not believe it to be effective. I discussed with the ortho my conversations with Dr Rivard and he basically told me (in a nice way) that he himself had spent two days with Dr. Rivard in Montreal to learn about the Spinecor system but continues to be less than convinced that it is any better than no brace at all. He pointed to the studies as "marketing studies". He told me that NIH is attempting to do a study on the effectiveness of bracing but is having trouble finding parents willing to be part of the controlled "no brace" group. Of course they won't find anyone - would anyone be willing to sacrifice their child in the name of science?

My daughter has been having terrible pain out of the brace. The doctor suggested that we see the orthotist to have the TLSO adjusted and go for physical therapy, come back in 4 months and then see if we still want the Spinecor (which he does fit) or perhaps a night-only brace. My daughter, who was very ready to go for the Spinecor NOW has picked up on the issue of "noncompliance" and vows to not wear the TLSO. My wife thinks that this is all ridiculous and, based on the fact that she is risser 0 along with her current physical development, is following her growth patterns and will not have a growth spurt for another year. She thinks we should either go without the brace or Spinecor. I went in to today's appointment with the clear intention of telling the orthopedist that we were switching to Spinecor but now, once again, I have lost my conviction and am in doubt. I know we want to do what's best. At this point she has no interest in listening at all and is pretty hysterical about the prospect of the brace and PT. Now what????

[cherylplinder]

mrf,
I sympathize with everything that you are going through. It is really hard to make these decisions.
I was motivated to respond because of the pain that my daughter Rachel was in before the Spinecor. She had had significant pain for at least a year. She couldn't sit at the piano for more than 20 minutes. She couldn't run and play. She couldn't do anything that required repetitive stooping.
Our orthopedic surgeon put her in the TLSO first. There was absolutely no correction of her curve in brace(TLSO). It was a moot point as to whether to continue with that. She was only in the brace for the few weeks it took us to get an in brace x-ray.
Our ortho said the same thing that yours told you before she got her TLSO. He said that the brace(TLSO) was to hold her curve. He indicated that he expected her curve to return to what it was before bracing after bracing with the TLSO was completed.

Back to the pain. She has not been in pain since she got the Spinecor. The change was immediate. The first month or so, she was in pain when she was out of brace. Now, her muscles must be more adjusted to where the brace holds her because she can be out of brace for hours and never has pain.(She generally wears her brace 23 hours a day. She is very comfortable in it. But this summer we went camping in July in the Smoky Mountains. She was out of brace for hours at a time playing in the streams, etc.)
Rachel is now 11, but had just turned 10 when she got the Spinecor. She has been in the brace since January. In the year before the Spinecor, her curve, unbraced, progressed from 18T/17L to 38T/27L. She had been at 18T/17L for a couple of years, so it was quite a surprise. She only grew a couple of centimeters in that year.
Since January, Rachel has grown about 3 inches. Her first in brace(Spinecor)xray showed 31T/19L. At her 4 month check up, she was 23T/22L, in Spinecor brace. At her 8 month check up, she was 20T/18L in Spinecor. So far, she is growing and her curve is at least holding. We have not done out of brace x-rays.
She looks great. Her right shoulder was AT LEAST an inch higher than her left in January. Her shoulders are now even. Her alignment is much better than before brace.
This brace is a God-send for her. Dr. James Sanders at the Erie, PA, Shriners told me in April, when we saw him for a second opinion, that NO BRACE would hold Rachel's curve. He said she had a 100% chance of surgery, and according to the stats, he is absolutely correct. Nonetheless, for the time being, we are beating the odds. That may not continue, but because of her growth since being put in the brace and her results so far, her prognosis is good for that to continue. And my child is not in pain and is fuctioning normally.
Best wishes in making a very difficult decision.
Hugs,
Cheryl Linder

[cherylplinder]

Gerbo,
She lays with her convex side on the ball to stretch her concave side, is that correct?
Stretching the ligaments, doing the torsorotation excercises, swimming, and the Spinecor all make a lot of sense to me!

[gerbo]

She lays with her convex side on the ball to stretch her concave side, is that correct?

yep, we actually put one or two pillows in between to try to make the angle a bit bigger to produce more of a stretch, as without that the top of the ball just flattens out through bodyweight (if that makes sense.....)


Stretching the ligaments, doing the torsorotation excercises, swimming, and the Spinecor all make a lot of sense to me

i am a pretty "logical" kind of person, so I look for things which make sense. And still, there is this forever insecure type of feeling lurking about, am I making any difference? Where is it all going to end??

(but in the mean time; she is a very happy little girl at the moment, what more does one wants.........?)

[Celia]

He reiterated that the brace is to hold her current curve (25) NOT to correct. Is this what other orthos say as well?


If your daughter were much younger I think the possibility of getting *some* correction would be possible. 16 degree in brace correction is not bad but keep in mind that you're probably going to end up with a 25 degree curve once bracing is over and done with ....or worse


I discussed with the ortho my conversations with Dr Rivard and he basically told me (in a nice way) that he himself had spent two days with Dr. Rivard in Montreal to learn about the Spinecor system but continues to be less than convinced that it is any better than no brace at all. He pointed to the studies as "marketing studies". He told me that NIH is attempting to do a study on the effectiveness of bracing but is having trouble finding parents willing to be part of the controlled "no brace" group. Of course they won't find anyone - would anyone be willing to sacrifice their child in the name of science?

It's already been determined that rigid bracing is *ineffective* for a specific age group of adolescent curves because these *caring* doctors wait for the curve to progress beyond 30 degrees before starting treatment!!!! According to the studies - given your daughter's age and curve size she might be able to avoid surgery.....provided she wears her brace. I'm not even going to comment on the NIH "study" because it's just going to get me really REALLY upset :mad: Keep in mind that if you wait too long, the spinecor may not be an option and you won't have a choice but to continue with the TLSO.




celia

[mrf]

It's already been determined that rigid bracing is *ineffective* for a specific age group of adolescent curves because these *caring* doctors wait for the curve to progress beyond 30 degrees before starting treatment!!!! According to the studies - given your daughter's age and curve size she might be able to avoid surgery.....provided she wears her brace. I'm not even going to comment on the NIH "study" because it's just going to get me really REALLY upset :mad: Keep in mind that if you wait too long, the spinecor may not be an option and you won't have a choice but to continue with the TLSO.celia

Celia - you sound just like my wife who believes that the orthos are simply waiting for the curve to worsen with two things in mind: Surgery and $$$. While I am not as synical, I can't imagine all these kids are being braced simply as a place holder to allow them and us to feel as if we are doing something helpful until either their curves naturally progress or not. I'd like to hear your thoughts on the NIH study....

[cherylplinder]

Celia,
I also want to hear all your thoughts. I value what you think highly and don't know what these studies are proposing.
Tell us all about it!
Cheryl

[Celia]

I don’t want to be a cynic or a critic! I’m just trying to understand….is it greed??? Is the answer really that simple? Are our children’s lives dispensable because they have scoliosis? We have to question authority and not simply follow the dictates of doctors who may not have our children’s best interest in mind. Linda mentioned the study in a different thread and I’ll bring it up here:


[ Does bracing straighten a curved spine?

Decades-old treatment for scoliosis is supported by little scientific evidence

For decades, doctors have been prescribing braces for children with scoliosis -- a sideways curvature of the spine -- but there is actually little scientific evidence to support the practice. A team of Canadian and American researchers is hoping to change that.

Dr. James Wright, a co-investigator and surgeon-in-chief at the Hospital for Sick Children, says doctors aren't really sure braces reduce the risk of the curvature progressing to the point of requiring surgery. And wearing the uncomfortable and obtrusive device for several years could prove a heavy psychological burden for a teenager concerned about fitting in with her peers.

"I have to say to the family, I think they're probably effective, but I'm not absolutely certain," Wright says. "This is one of those things which is quite inconvenient, it's quite expensive and it has side-effects, which are what it does to the psyche of a growing adolescent."

Surgery, on the other hand, comes with "low but significant" risks for paralysis and blood transfusion, and could lead to long-term back problems as a result of the need to fuse the spine in a straightened position. "If we could reduce the risk of ultimate surgery, that would be a real benefit," Wright says.

Showing whether bracing actually works would also address a controversy over whether children should be checked for scoliosis at school or the doctor's office. Some medical organizations support this practice, while others recommend against it because of a lack of evidence for an effective treatment.

To determine whether bracing works, Dr. Wright and researchers at 19 other centres across North America are embarking on a five-year study in which they will randomly assign about 480 children (65 of them from Canada) to be fitted with a brace or simply observed. At the end of the study, they will see whether children who wore the brace were less likely to need corrective surgery.

The Canadian Institutes of Health Research and the Shriners hospital system have promised funding for seven centres involved in the $3.5-million US study, contingent on the U.S. National Institutes of Health picking up the rest of the tab.

The NIH turned down the group's initial request for funding but has given them permission to reapply this year.

I'm not sure where this guy gets his information, but the Scoliosis Research Society funded a study, published in 1997, that showed definitively that bracing is effective in specific populations:
Bone Joint Surg Am. 1997 May;79(5):664-74. Related Articles, Links

A meta-analysis of the efficacy of non-operative treatments for idiopathic scoliosis.
Rowe DE, Bernstein SM, Riddick MF, Adler F, Emans JB, Gardner-Bonneau D.
Kalamazoo Center for Medical Studies, Michigan 49008, USA. rowe@kcms.msu.edu

With use of data culled from twenty studies, members of the Prevalence and Natural History Committee of the Scoliosis Research Society conducted a meta-analysis of 1910 patients who had been managed with bracing (1459 patients), lateral electrical surface stimulation (322 patients), or observation (129 patients) because of idiopathic scoliosis. Three variables - the type of treatment, the level of maturity, and the criterion for failure - were analyzed to determine which had the greatest impact on the outcome. We also examined the effect of the type of brace that was used and the duration of bracing on the success of treatment. The number of failures of treatment in each study was determined by calculating the total number of patients who had unacceptable progression of the curve (as defined in the study), who could not comply with or tolerate treatment, or who had an operation. The percentage of patients who completed a given course of treatment without failure, adjusted for the sample sizes of the studies in which that treatment was used, yielded the weighted mean proportion of success for that treatment. The weighted mean proportion of success was 0.39 for lateral electrical surface stimulation, 0.49 for observation only, 0.60 for bracing for eight hours per day, 0.62 for bracing for sixteen hours per day, and 0.93 for bracing for twenty-three hours per day. The twenty-three-hour regimens were significantly more successful than any other treatment (p < 0.0001). The difference between the eight and sixteen-hour regimens was not significant, with the numbers available. Although lateral electrical surface stimulation was associated with a lower weighted mean proportion of success than observation only, the difference was not significant, with the numbers available. This meta-analysis demonstrates the effectiveness of bracing for the treatment of idiopathic scoliosis. The weighted mean proportion of success for the six types of braces included in this review was 0.92, with the highest proportion (0.99) achieved with the Milwaukee brace. We found that use of the Milwaukee brace or another thoracolumbosacral orthosis for twenty-three hours per day effectively halted progression of the curve. Bracing for eight or sixteen hours per day was found to be significantly less effective than bracing for twenty-three hours per day (p < 0.0001).[/COLOR]

[gerbo]

celia, just for the record, I can see you're angry. Is it because this is evidence that we (well, they) have been bracing for years without knowing whether it will do any good, or are you saying that there is no need for this study as there are enough other studies around answering this question (as good as it ever will be answered)?? :confused: :confused:

[Celia]

No I'm just suffering from low caffeine right now :D Bracing does work for a specific group of children and it appalls me that doctors still take the "wait and watch" approach and once the curve is gets beyond a certain level then they say: "let's brace it now" knowing perfectly well it's not going to work. O.k….I'm a cynic, right??? I wasn't always this way and I did believe in the goodness of mankind - I know it's still there.

[gerbo]

so what do you exactly think of this study??

(ps, do share all your general cynisism)

[cherylplinder]

I thought that that was what you thought. "Watch and wait until it's too late" is a really bad policy that seems to be the current trend in bracing. Did they not just publish recommendations that raised the degree of curvature to brace to 30 degrees instead of 25?
I feel the same way that you do. When you wait until then, there is little room for correction and little hope of improvement. I also feel, and I can't wait til the stats back me up, that bracing with Spinecor in curves above 17 degrees, when curves are much more flexible and correctable, is the only sensible thing. Of course it will be difficult for the stats to back me up if they attribute the successes in Montreal to "marketing".
What would a new and innovative approach yeild?
I don't know if we'll ever know.

I face things every day of my life that require me to look beyond my circumstances to my blessings, move on, and make the best of it. I think the hogwash about the damage to teens self esteem is just that. Hogwash. Sorry if I offend anyone's ideas. We live in a society that focuses on the outside of a person. But the old adage still rings true.
Beauty is only skin deep. Character is to the bone, and with a close loving parental relationship, the hardships our children face will make them stronger and not scarred for life by the trauma of bracing.
I am not belittling our kids pain, only saying that it is an opportunity for a parent to help a child grow. God is bigger than the problems we face and brings good out of every trial.

[Celia]

Cheryl,

OMG...they're making it official that it's 30 degrees before bracing???! UGHHHHH!!!!! Well no wonder bracing doesn't work! I guess surgery is the only option. I *loved* your last paragraph!!!


Gerbo,

It really sounds like you're egging me on. Surely you must have your own opinions and we'd love to hear them ;)

[cherylplinder]

Celia,
I can't remember where I read that recommendation. I remember thinking that I thought 25 was too high, and that it should be lowered not raised. I'll have to look for it again. I thought you might know.

P.S. As long as there are real doctors, like Dr. Rivard and Dr. Coillard out there, more interested in making a difference in children's lives than in their pocketbooks, all is not lost. There will always be great men and women in our society. They have always been rare.


Gerbo,
Yeah! What are your thoughts?

Cheryl

[gerbo]

It really sounds like you're egging me on.

Celia, it looks, unintentionally, a bit as if i am egging you on. Where i said "do share all your general cynisism", it meaned to say "I do share etc. etc. Sorry for the misunderstanding. :o :o

All i was asking was what you meaned when you said earlier


I'm not even going to comment on the NIH "study" because it's just going to get me really REALLY upset

I am happy to give thoughts on anything you want, but not sure what you want thoughts on though, i.e. bracing, consultant attitudes, nih study, global warming or Jim Carrey's performance as The Grinch in "how the grinch stole christmas" which is the most fantastic and funny satire and parabel on the theme of christmas and christmas associated greed and indulgence I have seen.

In all fairness, over the past 1000+ replies to the original question in this thread, i think it has become clear that we share very similar thoughts and frustrations on these issues, and none of us would be in the current position if we would just have followed advice given by our (initial) doctors and "done as we were told".

[LindaRacine]

Please understand that this study is Canadian. I believe it does not reflect the usual American standards in terms of bracing, but I guess that would depend on the individual doctor.

In addition to individual physician beliefs, there is no set of single variables that represent when a child should be braced. It depends on their Cobb angle, curve type, and skeletal age.

--Linda

[Celia]

Linda,

Maybe you’re privy to information the rest of us don’t have but nowhere in the article does it state that Dr. Wright is the ring leader for this study nor does it state that it’s specifically a Canadian study…. further since the majority of patients are in the U.S. one would assume that it’s an American doctor who initiated the study and is heading it. When I criticize doctors in general, I'm referring to American doctors and not Canadian since I have the highest regard for the two Canadian doctors that have/are treating my daughter and have literally saved her life.

Gerbo,

You missed your calling in politics because you’ve managed to talk about Jim Carey and every thing else under the sun instead of answering the question at hand.... i.e., your views on the NIH study LOL !!!! :D :D

[LindaRacine]

Celia...

Is this not the study to which you referred?

http://www.macleans.ca/topstories/health/article.jsp?content=20050419_100836_5800

I believe that James Wright is, indeed, Canadian.

--Linda

[Celia]

....Dr. James Wright, a co-investigator and surgeon-in-chief at the Hospital for Sick Children....The Canadian Institutes of Health Research and the Shriners hospital system have promised funding for seven centres involved in the $3.5-million US study, contingent on the U.S. National Institutes of Health picking up the rest of the tab.

Yes we are reading the same article! It states that Dr. Wright is a co-investigator and that the Canadian Institute of Health Research and the Shriner's Hospital System have promised funding for the 3.5 Million U.S. Study :)

[LindaRacine]

Sorry, I should not have stated the "study" was Canadian. The article that you referred to was, however, focusing on Dr. Wright who is Canadian.

In that article, Dr. Wright is credited with stating "For decades, doctors have been prescribing braces for children with scoliosis -- a sideways curvature of the spine -- but there is actually little scientific evidence to support the practice."

I believe that statement is incorrect in that there is plenty of evidence that bracing works. In my original post, I included this study:


Bone Joint Surg Am. 1997 May;79(5):664-74. Related Articles, Links

A meta-analysis of the efficacy of non-operative treatments for idiopathic scoliosis.
Rowe DE, Bernstein SM, Riddick MF, Adler F, Emans JB, Gardner-Bonneau D.
Kalamazoo Center for Medical Studies, Michigan 49008, USA. rowe@kcms.msu.edu

With use of data culled from twenty studies, members of the Prevalence and Natural History Committee of the Scoliosis Research Society conducted a meta-analysis of 1910 patients who had been managed with bracing (1459 patients), lateral electrical surface stimulation (322 patients), or observation (129 patients) because of idiopathic scoliosis. Three variables - the type of treatment, the level of maturity, and the criterion for failure - were analyzed to determine which had the greatest impact on the outcome. We also examined the effect of the type of brace that was used and the duration of bracing on the success of treatment. The number of failures of treatment in each study was determined by calculating the total number of patients who had unacceptable progression of the curve (as defined in the study), who could not comply with or tolerate treatment, or who had an operation. The percentage of patients who completed a given course of treatment without failure, adjusted for the sample sizes of the studies in which that treatment was used, yielded the weighted mean proportion of success for that treatment. The weighted mean proportion of success was 0.39 for lateral electrical surface stimulation, 0.49 for observation only, 0.60 for bracing for eight hours per day, 0.62 for bracing for sixteen hours per day, and 0.93 for bracing for twenty-three hours per day. The twenty-three-hour regimens were significantly more successful than any other treatment (p < 0.0001). The difference between the eight and sixteen-hour regimens was not significant, with the numbers available. Although lateral electrical surface stimulation was associated with a lower weighted mean proportion of success than observation only, the difference was not significant, with the numbers available. This meta-analysis demonstrates the effectiveness of bracing for the treatment of idiopathic scoliosis. The weighted mean proportion of success for the six types of braces included in this review was 0.92, with the highest proportion (0.99) achieved with the Milwaukee brace. We found that use of the Milwaukee brace or another thoracolumbosacral orthosis for twenty-three hours per day effectively halted progression of the curve. Bracing for eight or sixteen hours per day was found to be significantly less effective than bracing for twenty-three hours per day (p < 0.0001).


Unfortunately, PubMed does not have the abstract for the big bracing study funded by the SRS (Effectiveness of treatment with a brace in girls who have adolescent idiopathic scoliosis. A prospective, controlled study based on data from the Brace Study of the Scoliosis Research Society. J Bone Joint Surg Am 1995 Jun;77(6):815-22). In that large, multi-center study, they found that "The end point of failure of treatment was defined as an increase in the curve of at least 6 degrees, from the time of the first roentgenogram, or two consecutive roentgenograms. As determined with use of this end point, treatment with a brace [defined as "an underarm plastic brace"] failed in 17 of the 111 patients; observation only, in 58 of the 129 patients; and electrical stimulation, in 22 of the 46 patients. According to survivorship analysis, treatment with a brace was associated with a success rate of 74% (95% confidence interval, 16 to 49); and electrical stimulation, with a success rate of 33% (95% confidence interval, 12 to 60).

So, I think there is plenty of evidence that bracing works, at least until skeletal maturity. Now, someone needs to do some very long-term followup, to know what happens to these patients in 30-40 years.

--Linda

[cherylplinder]

lisanna's right shoulder is deliberately pulled down to help to correct her (Right T11) curve

I went back to look because I remembered your comment.
I tried to contact them in Montreal the week they were out. I emailed them the week after that, and it took a while for them to get back to me. I didn't say in my e-mail that Rachel's 4 strap was extremely tight, but I told them that all of a sudden she seemed off balance, with her right hip jutting to the side and that she lost one of the inches she had grown. Dr. Rivard said not to worry. I called the next week, because I didn't feel I had communicated what was going on fully, and Dr. Coillard got back to me on Thursday and said that I could loosen the 4 strap. Over the weekend, I noticed that Rachel's left shoulder is now higher than her right even when she is out of brace. I had not realized that when I talked to Dr. Coillard. They made her appt for Jan 18th, but I am anxious. When I loosen the 4 strap even more, her rotation goes up even more. Everything seems a bit off right now and I wish they had time to take a look. I know I sound a bit disorganized.
I feel like I have already bothered them twice. UGH!
Comments anyone?

[gerbo]

These attacks of feeling insecure are horrible, aren't they, and I am sure we all get them all the the time.

I am sure that you realise that it is impossible for us "fellow travellers on this long and winding road" to comment on the technicalities of the brace.

the only thing I could suggest, and I understand your hesitation, is to put the wording of your message in an email to them, and see what comes back.

sorry i cannot be of more help

gerbo

[gerbo]

You missed your calling in politics because you’ve managed to talk about Jim Carey and every thing else under the sun instead of answering the question at hand.... i.e., your views on the NIH study

I think i fall in line with Linda, and I think yourself, that there appear to be enough studies around showing that bracing helps to some extend.

To me what is really needed is to study factors which determine whether a brace is likely to work, and considering that wearer acceptability and correction achieved in brace are major factors, further study is needed in brace design to work out how to achieve maximum comfort and how to achive as much correction as possible. Considering there is so much variety in practice I feel there is a case of comparing succesrates in different centres and work out where the best differ from the worse.

gerbo

[Celia]

Please understand that this study is Canadian. I believe it does not reflect the usual American standards in terms of bracing, but I guess that would depend on the individual doctor.

We have established that this is in fact a U.S. study initiated by a U.S. doctor and NOT Canadian. I don’t know how anyone could turn a blind eye to the standard of *un* care that exists in the United States. You don’t have to look very far to see that parents are traveling thousands of miles in some cases to get the best care for their children – why is this? Doctors are idly standing by watching innocent babies and children progress to the point where surgery is the only option and these children are no better for it. Their lives are forever changed. Are these doctors disciplined in any way by their respective associations? Do we see lawsuits being launched by families? No? Is it because no doctor will testify against his/her peer?

[MATJESNIC]

Not really sure what you are all talking about. I know you are discussing bracing and whether it works and why doctors wait for bracing.

Just want to make sure my country is being defended here. I love the United States of America and although our health care is not perfect, we have some of the best and the brightest doctors and surgeons.

I am very grateful to Drs. Rivard and Coillard for their Spinecor brace. That is why I take Nicole to Montreal to be seen by them. But if she does need surgery, I take comfort in knowing that I am surrounded by some of the most amazing surgeons in the field. I live near Children's Hospital of Phila and Shriner's.

As many of you know, Shriner's will perform surgery on any child who needs it, free of charge.

Melissa

[meagain]

Cheryl: I've been troubled lately by the changes that happen in the number two band. If my daughter wears the brace religiously, the number two band becomes too loose, regardless of washing. Unfortunately, the minor adjustments that might need to be made aren't since our provider is out of state. Or vice versa, if she isn't compliant the band becomes tight-I wonder how important the adjustments are in the course of wearing the brace. Megan

[gerbo]

celia; wow, sparks really fly when you get angry :eek: :eek: , and that was without me egging you on ;) ;)

megan; 3 monthly adjustments appear to be an integral part of using the Spinecor

melissa; when is Nicole's next review? How is she? Are you OK?

[MATJESNIC]

Gerbo,

Thanks for asking. We go on Dec 13. I honestly don't know what to expect. I can't tell if Nicole is the same, better, or worse. I do know that when she takes off her brace and walks around too much, her back hurts. I obviously don't like that. Anyway, I don't think she has grown. She is 5'5" and now taller than me. I believe this will be an important visit. Of course, I say that about each appt.

Hope your daughter is doing well. Nicole is getting braces this morning. Most of the kids in Middle School have them so it is not really a big deal.

Melissa

[Celia]

I did warn everyone in advance that I didn’t want to comment on the NIH study :rolleyes: I think Linda’s quote and the thread entitled “Are Some Canadian Doctors from the Dark Ages?” fueled it. Sorry if I offended anyone in the U.S.

[mariaf]

I agree with Melissa. The quality of medical care in the U.S. is second to none. Many, many people from other countries come HERE for care - which speaks volumes.

[gerbo]

I think Linda’s quote and the thread entitled “Are Some Canadian Doctors from the Dark Ages?” fueled it.

ahh, now i understand......


Sorry if I offended anyone in the U.S.

doesn't really apply to me, still, surely we all take the good with the bad.......

[MATJESNIC]

We are all on the same side. We are caring Parents from all over the world who are trying to do what's best for our children.

We all love our respective countries. That goes without saying.
I am very thankful for all the freedoms we have to go and seek the medical care we need for our children.

I need to end this now before I go about singing "God Bless America." I am extremely patriotic!!!

Now, let's all try to get along!!!!!! lol !!!

Melissa

[mariaf]

Well said, Melissa :)

[LindaRacine]

I sincerely apologize to Cedlia and Canadians everywhere. I dislike when anyone passes judgment on an entire group based on what a few have done, and yet I did it myself. I definitely should have come up with a better Title.

That post is over a year and a half old. Now I'm going to have to worry about everything I ever said! ;-)

--Linda

[Celia]

Apology accepted! I don't stay angry for very long… life's too short for that. Melissa, I could just imagine you singing "God Bless America" That is too funny LOL!!!! :D

[gerbo]

shall we have a group hug now??

[Celia]

Yes, as long as you promise not to squeeze too tight :p

[LindaRacine]

OK, but don't touch my back. ;-)

[landa]

i dnt know if this is spine curvature case or not-i just wanted to ask something. i have a cousin, around 13-14 yrs of age. at birth, she was taken out with forceps and the doctors while taking her out damaged her spine. she has been wearing braces to give her spine proper shape, but even at 8 years old, she was bent-its mostly the upper spine thats affected. her mom said she may have to go for surgery at a later stage. my question is whether with surgery she can get a normal spine shape?
wont it be more difficult to attempt corrective surgery when she's older rather thatn younger? :confused:

[MATJESNIC]

Landa,

I'm sorry I can't help you. Maybe someone else can.

Would any of you (people I talk to a lot) feel comfortable giving out your addresses on my e-mail. I would love to send out holiday picture cards to you. I feel more comfortable doing that then posting any pictures up on this website. It would be great to put the pictures with the names.

It was so cool when Pola and I finally exchanged pictures. I think I told you our daughters looked like sisters!!

Anyway, Let me know. Believe me, I know it's early and I don't have the pictures done yet. But I am thinking ahead.

Melissa

[Celia]

Melissa,

That sounds lovely! I sent you my address... please send me yours too :p

[Snoopy]

Melissa,

I know you have my address (if you didn't save it, let me know), but I can't believe I didn't get yours when we met over the summer! Please send me yours.

Mary Lou

[bizzleber]

Has anyone heard anything about the design of the bottom of the spinecor brace being changed? I thought I read something about that and intended to go back and read more, but now I can't remember where I saw that.

[cherylplinder]

Hey Melissa,
I would love to have your address. I'll send you mine!

[Celia]

Has anyone heard anything about the design of the bottom of the spinecor brace being changed? I thought I read something about that and intended to go back and read more, but now I can't remember where I saw that.


I read something about this too and I think it was CloggerX (?) who mentioned this. I believe she said the chiropractors in her office were testing the new design on adult patients and not young patients. Personally I prefer the tried and true design knowing there is some chance of success.


hope this helps :)

[gerbo]

mr mills showed us a prototype, cyclingshorts with studs attached in relevant places, and asked lisanna to try it on. Small framed as she is, it was much too big. a smaller version to try out was "promised" but nothing has come forward yet.

Yes it appeared much more comfortable, but my feeling was that any significant pull from the various elastic bands, would completely twist it, reducing its effectiveness.

don't know whether this is same design as alternatives mentioned by others

[jaymes10]

My 3 daughters just saw Dr. Sanders in Erie, PA at Shriners. Wonderful facility and great people. My 6yr old that was 11 thoracic/22 lumbar with a 3/8" right leg length differential had a less than 5 degree lumbar curve with her lift. Wonderful news..repeat x-rays 1 yr. Renal ultrasound requested due to leg length. Anybody have that done due to leg length?
My 3yr old is 10 thoracic/10 lumbar wait 1yr repeat x-rays.
My 5yr old was 39 thoracic/33 lumbar diagnosed 8/25/06. MRI negative except for a 5cm cyst in her right brain lobe......follow up MRI February of the brain.Tried TLSO for 1 month no change thoracic, lumbar went to 22 degrees. Dr. Sanders tried Spinecor in brace x-ray no change thoracic, lumbar went to 30 degrees.......the positive there was rotation noted. They called Montreal and Montreal said have her try SpineCor for 5 weeks return and repeat x-rays. Follow-up is 12/21.
Dr. Sanders ordered us to go for genetic counseling to rule out muscle disease or possibly Marfan's syndrome. Anybody familiar with those problems?
As always I appreciate any insight.
How do you wash the SpineCor brace?
What about undergarments?
Thanks Dawn

[Celia]

Dawn,

You really have your hands full with all three kids having orthopaedic issues and everything seems to be under control – which is great news!!! Good job Mom!

There was a big discussion (controversy ?!) on washing the spinecor and I can't remember what the consensus was - I think I raised a few eyebrows when I said I didn't wash the elastic bands that often for fear that it would stretch and others strongly believe that the elastic bands have to be washed weekly in order to maintain their elasticity. I air dry everything and have an extra set of elastic bands for this purpose – it works for me. I think the discussion is somewhere near the beginning of the thread.

As for undergarments, did you not receive the spinecor bodysuit? I converted the snaps to Velcro on the spinecor bodysuits because my little one can't undo them. There is a website at http://www.special-clothes.com/ where you can order body suits with Velcro fasteners instead of the snaps.

[gerbo]

How do you wash the SpineCor brace?
What about undergarments?

we put each of two parts (pelvic and upper part with straps) in separate pillowcases, closed so they won't come out, and wash them at 30 degrees.

Spinecor manufacturer recommends weekly washing as this actually keeps the bands tight, i.e prevent them from getting too stretchy

we do not use specific undergarments, lisanna wears top part on her skin, prefers this, less hassle

best wishes
gerbo

[Celia]

Dawn,

I just realized the special clothes website I gave you was inaccurate and it was a Korean website :D :D :D :eek: I omitted the "-" from special clothes. Anyhoo.... I've corrected it.

[christine2]

Hi everyone

Dr. Colliard told us to put the brace in 2 seperate laundry bags and wash in washing machine on cold with detergent and oxy clean then put in dryer on low. It takes me about 1 1/2 and works great. The bands definately feel tighter after washing.

As far as the body suits we have tryed a ton of things but my daughter is most comfortable in the spinecor bodysuits. I figure they are expensive but as important as a good pair of shoes!!

Christine

[Christina_in_NC]

We had our appointment in Baltimore with Dr Sponsellor and the orthotist who fits the spinecor - Monday before Thanksgiving.
It was very disappointing - although my daughter is handling it all very well. Her curves have conitnued to worsen - from 36T to 44T and from 30L to 38L. Basically that is a degree a week since our first x-rays two months ago. She is risser 0 at 13 years of age. We did go ahead and try the spinecor on (after all we had driven 5.5 hours to be there) - but in brace x-rays showed less than 2 degree change in any curve.
Originally our plan was to try hard to convince them to let us take spinecor and at the very least try it for several months. If spinecor was not a great option we were not going to use a brace at all. But, with the news of the rapid collapsing of her spine that all changed. It may be the spinecor would still help, but as fast as the curve is advancing and with 2 curves (they confirmed it is a true double curve and not one curve with a compensating curve) we realized we need to do whatever we can do even hold it so she can grow some.
We loved the spinecor and really still feel it is a wonderful brace and well worth it for anyone that fits the criteria.
Disappointed, but glad we had the x-rays taken and know where we are. The rigid brace fitting is set for Tuesday in our hometown.
Christina in NC

[gerbo]

very upsetting, all of us know this feeling that every review might results in something similar showing on the x-rays. If there is improvement or results are stable; great, and we relax a bit again, until the next follow up, sometimes curves are getting worse and than there is this feeling of disappointment, sadness, guild (?) etc.

At such a moment, and i have said this before, it sometimes helps to get into "worse-scenario mode" and work out what is the worst what can happen from there. In your case this would be surgery, and as one of your surgeons already suggested; that isn't such a nightmare as you might imagine and the surgical forums are full of stories of succesful outcomes of surgery with people able to lead entirely normal lives after.

Realising that the worst isn't that bad, you just about can try to relax a bit and hopefully cope better with what is coming at you currently.

What would i do?

1) realise that whatever i do, with these kind of curves there is a good chance that whatever brace i use, it might not make any difference

2) make sure that the spinecor is fitted according to guidelines. Maybe send a photo by email to the canadian doctors to see whether they can comment

3) be patient, further improvement might follow in due course

4) make sure you're doing torsorotation correctly (i understand you're trying this, how exactly are you doing it??)

5) again, try to be strong, you'll cope, even if "the worse" would happen

Sorry Christine, this is as helpful as I can be at this stage, I know it isn't much good in you situation, take care though

best wishes

gerbo

[Celia]

As Gerbo says no brace will likely hold her curve given that her curves are now at 44 degrees. However....spinal fusion is not the only surgery out there. I'm sure many are aware of Vertebral Stapling offered by Dr. Betz and Dr. Andrea at Shriner's Philly. I think 44 degrees is right at the borderline for Stapling and the advantage, even though it's experimental is that fusion can be avoided and your daughter will still have flexibility. The main problem with this scenario is that by the time your daughter gets an appointment with Dr. Betz or anyone else, her curve might be even greater and she will no longer qualify for this procedure. What I would do in your situation is put her in a corrective cast for a few months until you can figure out what the next step should be. One of the benefits of going into a cast at this point in time is that your daughter is obviously going through a growth spurt and the cast may in fact "correct" her to a lower level and the spinecor might still be an option for her. :D Yesiree folks....I'm one of those "never say never" types :p ;)

[MATJESNIC]

Stapling is for younger kids with lower curves. Nicole was only 12 with a smaller curve than Christina's daughter and Dr. D'Andrea said she was too old and her curve was too big.

Melissa

[LindaRacine]

And, unfortunately, there is no guarantee that stapling will allow a patient to avoid fusion surgery, especially with "larger" curves.

--Linda

[Celia]

Melissa,

Didn't they reject Nicole because she was a risser 2 ? I don't know the criteria but according to the chart on page S259 "An Innovative Technique of Vertebral Body Stapling..." by Dr. Betz et al., the oldest patient appears to be a 14 year old.



http://www.scoliosis-support.org/uploads/stapling1.pdf

[MATJESNIC]

No, Celia,
Nicole was still at a risser 0 when we saw Dr. D'Andrea. The only thing I don't know about Christina's daughter is whether or not she is done with her big growth spurts. Nicole is done with hers. I know they like to perform the surgeries on kids who still have a lot of growth ahead of them. Even though Nicole was at a 0, she didn't fit that criteria.


Melissa

[Christina_in_NC]

I agree that it does not look like the stapling is an option. Even if she were borderline now, it would take a couple of weeks to get the whole process going and as quickly as her curve is collapsing it would be nearing the 50 degree mark in a few weeks. From what I've seen though, I think even though she is still risser 0 that she is at the end of that stage since it would appear that she is growing pretty quickly right now - mostly based on the rapidity of the curve progression.

Thanks Gerbo for the encouragement.

DD really is doing well - "God gave me this back and He can do what He wants" is her attitude. We trust that god will handle this...

At the same time we know the statistics are surgery for her - we are hoping to delay that process until her back is done growing.

1 - We will continue to do the torsion exercises - we are doing them on a machine at the gym as outlined in the article...
2 - we will continue with PT and/or chiro for ache relief and for flexibility in her back muscles
3 - We know that no matter what she will most likely need surgery and the Dr in Baltimore said he would be happy if it could be put off until this summer - but we are hoping for more time.
4 - We are being followed by the surgeon here - we really love him - we will have an in brace x-ray in Dec. DD is willing to be a good patient with the brace and has no issues wearing it in front of other people, so unless it really seems not to be doing anything she will wear it until done growing or until surgery.

Christina

[MATJESNIC]

Christina,

Your daughter has an awesome attitude. I hope she and Nicole continue to correspond because maybe she can have a positive influence on her. Nicole can be extremely negative at times.

Good luck with the brace. Keep us posted.


Melissa

[gerbo]

christina; both of you seem to be doing as well as one could expect (or even better) in the circumstances

re torso rotation; did you actua;lly find a proper medx machine? To me the pitfalls to look for were; ensuring the pelvis stays stable whilst twisting (so the twist really comes from the torso and not also from pelvicmovements) 2) ensure equal exposure between both sides, so the weaker side can catch up.

best wishes

gerbo

[Christina_in_NC]

Gerbo,
no it was not a medx machine. I will see what they are doing to make sure the pelvis is still.

Melissa - she loved talking to Nicole - so I'm sure she'll stay in touch! Thanks again!

I'm sure our days will go up and down, but we'll make the most of the good ones! Tomorrow is casting for the brace...
Christina

[gerbo]

i am sitting behind lisanna, holding on to her pelvis so it is stabilised on the seat, so she cannot twist it (a lot) and all the movement comes from the torso

gerbo

[pat]

Uggg, moving the spam out of the way. p

[Christina_in_NC]

Thanks Gerbo- we may give that a try. I'll be careful to notice exactly what they are doing next time at the gym!
Christina

[mpj]

Hello,

I have been reading this forum for a few weeks now and have already e-mailed some of you. Thanks for your insights. Our daughter Madeline was diagnosed with scoliosis high in her thoracic region. She has a curve of 24 degrees. We are going to be seeing Dr. Rivard in Montreal on Dec. 11 for our first visit. If you have any tips or adivice on what I should expect or ask that would be great.

Sincerley,

Sarah

[MATJESNIC]

Sarah,

Our appt is on Wed, the 12th.

they will probably try the spinecor on her and then do an x-ray to see if her curve goes down a significant amount. Then if you agree that you want the spinecor they will explain how to put it on.

Brush up on your French. Good luck. Too bad we will miss you by one day.

Melissa

[Celia]

Good luck Sarah! I also wanted to wish Pat all the best this week and of course, you too Melissa - I know it's an important visit for Nicole. :)

[pat]

Thanks Celia, I'm anxious to see what they say about "replacement parts." It's been over a year, and it looks pretty worn, but I just asked her yesterday, and she says it feels just as tight as ever. She looks good (her back.) And she's grown some, I think. pat

[mpj]

Melissa, I can't believe we will miss you by just one day. I hope your appointment goes well. What would be a significant amount of correction in the brace to make it worth pursuing? Will they let me know if they feel it is not significant enough?

Thanks again for the responses.

Sincerley,

Sarah

[MATJESNIC]

Sarah,

I'm sorry, I made a mistake. It is on Wed, the 13th. We are leaving on the 12th. It's funny because I just got a call from St. Justine, confirming my appointment. I am not sure what would be considered as a good correction. Nicole had a 16 degree correction initially and now has a 10 degree correction on each curve. The doctors were happy with that.

They will tell you if they don't think the spinecor is right for your daughter. I'm not sure if I know any of your information. Your name is not familiar to me. Where do you live and how old is your daughter?

Melissa

[mpj]

We live in WI and Madelnie is 8.

Sarah

[MATJESNIC]

It is so much more economical to stay in New York outside of the border than to stay in the heart of Montreal. I just booked our room and it is less than half the price. Of course, in Montreal we were staying at a Residence Inn and basically had an apartment. But what a waste for only 3 of us.

Melissa

[christine2]

Hi Sara

My name is Chris my daughter is 6. We have been to montreal 2 times and have stayed in Plattsberg NY There is a hotel (Days Inn I think) It is not a 5 star but is kid freindly. They have a indoor pool with water slide and a small arcade. There is also a resteraunt that is priced well with decent food.

Both times we drove 6 hours to stay in Plattsberg overnight then crossed the border to go to our apptointment. Then drove straight home after. We did visit the parc safari zoo once and had a great time there.

Good luck on your trip

Christine

[MATJESNIC]

Christine,

That is where we are staying. I heard it is the nicest one in Plattsburgh. Sarah isn't looking for a place to stay in N.Y. because she is flying in to Montreal. At least that's what I thought.
Was there a long line to get across the border in the morning?

Melissa

[mpj]

This time we are flying into Montreal. I will definitely look into other options if we end up going back. Thanks for the lodging tips.

Sarah

[christine2]

Melissa

No the line was longer coming back in. FYI to everyone I understand that we will be needing passports as of Jan 2007 by air.

Chris

That spam is bad!!!!

[cherylplinder]

Speaking of Passports...........
Rachel and I applies for ours a couple of weeks ago. It was very simple.
Find out which branch of your post office handles this and go there. Take your driver's liscense and a certified copy of your birth certificate.
Our post office made our photos on site. Many passport photos made at other places are too small or of an inferior quality. Both parents have to be present and sign for a minor child.
In the south it takes up to 10 weeks because ours are, or used to be, processed in New Orleans.
I'll bet for most places the wait is 6 weeks, but you can expedite for a 2 week delivery!

[Katya]

May I ask how to make an appointment in Canada? Is there a website that I should go to or does it have to be done on the phone? I do not speak French...

[christine2]

Hi Katya

Go to www.spinecorportation.com and click on Canada. You will find the # for Dr Rivard and Dr Colliard. They do speak English, You do have to listen carefully. I do recall at one point Dr Rivard mentioning that the Spinecor is less successfull if it is after trying a rigid brace but your daughter is so young and you really have not used it that long that it may not be a problem.


Good luck

Christine

[pat]

HI Celia!!! The appointment went fine, she's holding at a 6 (in brace); she was a "1" in brace last time, but no concern, everyone's pleased. Still makes me worried . . . . No parts replaced, we asked about her thigh straps losing their velcro "stick," they advised us to go see a shoemaker, otherwise it's $500 to replace. No adjustments made to brace, back in 5/6 months. pat

[Celia]

Pat,

Hmmm....6 in brace is still very good correction and keep in mind that she is in the middle of her growth spurt. We definitely have to get the brace replaced next time we go and I guess it means going back 5 weeks later for adjustments. I'm going to see if we can forego x-rays for the fitting and then have an x-ray done 5 weeks later :confused: I wonder if the scoliometer will suffice.

[gerbo]

1 degree or 6 degree, its all withing the margin of error, so looks good to me!

celia; appears to me as well that x-rays at this stage are not going to change the management at all. So quite reasonable to ask not to have x-rays (the'll tell you if they disagree)

[MATJESNIC]

Pat,

That is a really good appointment. We are used to hearing numbers in the 20's and late 30's in-brace. So 6 sounds amazing to me. I'm really happy for you.


Melissa

[gerbo]

its you next week, isn't it Melissa, must be getting tense. So much hope for you you'll have good news!!

[MATJESNIC]

Thanks, Gerbo,

It is out of our control. No matter what happens, I am so proud of Nicole for wearing her brace with such dedication. I appreciate everyone's support. I will report back to y'all as soon as we get back on the 13th.

Melissa

[gerbo]

think you should be proud of yourself as well, just for sheer determination to get the best possible outcome for your daughter and just keeping going!!

wish you lots of strength and if i was religious I'd pray for you!

gerbo

[arairdon]

Pat,


We had to replace the velcro on my daughter's brace. I took it to a friend who can sew. We tried to sew it over the old velcro, but that didn't work, so we eventually just replaced the whole piece. Good luck.

Ann Rairdon

[Kalarasy]

My 8 year old son has a 31 thoracic degree curve and we decided to go with sinecor. We left to Montreal 2 weeks ago and at the initial fitting his cuve went from 31 to 7 degree. We were so happy.He is wearing the brace OK, but we have some problems with strap number 1 that gets disconnected sometimes even if he sneezes. I called in Montreal and they told me to go to a shoe maker with it. Now I am thinking that we've paid so much on it and I am worried that a shoe maker wouldn't be fit to work with it. Any suggestions will be greately appreaciated. By the way I love your thread, I ve been reeding it many times before we decided to go with spinecor. Thank you for all your help.
Adriana

[MATJESNIC]

Thanks, Gerbo,

It's nice to know you are thinking of us. Praying for good news at this point, doesn't make sense anyway. The curve is what it is. Too late now for it to become something else. It's like the old saying that if you hear firetrucks and you pray that it isn't your house that is burning. But the house is already burning, so the prayer isn't going to change that. Sorry if I am being too philosophical.

But I will be praying that God gives me the strength to be strong, no matter what the outcome.

As far as the woman whose son went from a 31 to an 8, that is awesome!!! Sorry I don't remember your name. I can't imagine that putting on a snap needs to be done by any expert from Spinecor. I believe Celia has had that done before. I am very happy that your son had such great success!!! Glad we could be of help. Hope you will join in our lively discussions!!! Where do you live?


Melissa

[Kalarasy]

We live in Portland, Oregon.I hope the brace will hold down the curve, I can't be too happy yet, I am still very worried. We have tried so many other treatments and none of them lowered his curve.

[MATJESNIC]

Kalarasy,

I think it is extremely encouraging that he went down so much in Spinecor. What other treatments did you try? How long ago was he diagnosed?

Melissa

[Kalarasy]

We had a providence night brace, boston brace, tried asco, chiropractor treatments, medical gymnastick and deep massage in Europe. He was diagnosed when he was 7 with a 20 degree curve and despite all these treatments his cuve progressed to 31 degrees. My son is tired of going to the doctors. Now we are doing pneumex in combination wth spinecor.
Adriana

[MATJESNIC]

Adriana,

That is amazing. You really have tried a lot of things. Have you ever been on the threads where people were talking about stapling at Shriner's in Phila. If Spinecor wasn't giving such good results for your guy so far, that would have been a possibility.

Do they know what is causing his scoliosis at such a young age? Or is it an unknown like it is for my daughter?

Melissa

[Kalarasy]

They don't know the cause, it may be ereditary, my sister has scoliosis. No, I don't know to much about stapling. I am trying to so anything I can to avoid any kind of surgery, but will see.
Thank you:
Adriana

[gerbo]

We had a providence night brace, boston brace, tried asco, chiropractor treatments, medical gymnastick and deep massage in Europe. He was diagnosed when he was 7 with a 20 degree curve and despite all these treatments his cuve progressed to 31 degrees. My son is tired of going to the doctors. Now we are doing pneumex in combination wth spinecor.

Great to hear about these results, must give you some hope.

I thought pneumex was another bracing system. are you using two braces currently?????

What was the medical gymnnastic in Europe like? Was this Schroth? Where did you go?

gerbo

[Celia]

... we have some problems with strap number 1 that gets disconnected sometimes even if he sneezes. I called in Montreal and they told me to go to a shoe maker with it. Now I am thinking that we've paid so much on it and I am worried that a shoe maker wouldn't be fit to work with it. Any suggestions will be greately appreaciated.

Having an extra set of straps really helps in times like this. The metal snap can wear out over time or be defective as in your case. There are two things you can do: a) phone Montreal and order another #1 strap - make sure it's the same length i.e., 50 cm or whatever, b) go to a shoe repair store and they will replace the snap for a nominal fee like $2.00. It takes them about 3 minutes to replace it.

Oh, and congrats on the correction!!!! :D

[cherylplinder]

Adriana,
I looked back at your posts to see what I missed. I saw that an MRI on your son revealed a syrinx. Does he have a chiari formation that is causing his syrinx or a tethered chord? Does a syrinx have to be caused by another underlying condition? What did Dr. Rivard and Dr. Coillard say about the syrinx? I am a bit confused because I think I thought that the curve could not really be improved until the syrinx was addressed. Obviously you had great initial success with the Spinecor in spite of the syrinx.

[cherylplinder]

I'm freezing! It got down to 19 degrees last night. I usually keep the heat at 60 degrees. It's at 75 now. Brrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!
lol

[desheah]

i wanted to add that my son lucas who is now 5 yrs old was the smallest child to get fitted by drs. rivard and coillard for a spinecor. my husband and i have modified the pelvic base since he is so very little around the waist. the velcro straps just would not hold together. we sewed on strap material on both sides and a clasp to those horizontal straps on the pelvic brace. i will have to take a picture and post it.

deshea

[Celia]

I'm not sure, but I think height is the determining factor. Deshea, wasn't Lucas about 41 inches tall when he went into the brace?

I hope Ann doesn't mind me saying this :p .... but her daughter is the little girl in last year's SRS presentation wearing the spinecor brace doing ballet and the headstand.

[Katya]

Now we are doing pneumex in combination wth spinecor.
Adriana

I still do not quite get it: what is pneumex?

I am a mother of a 7 year old with 30*/18* (compensatory) curves. We have tried boston night time brace, deep tissue massage in Europe, some exercises and swimming, of course. The night brace was a fiasco, so I am trying to make an appt in Montreal for a spinecor fitting. I am trying to find out as much as possible about this program, but most of the info seems to relate mostly to the brace. However, it looks like that some kind of physical therapy seems to be involved as well. Can anyone share their experiences in this respect?
Katya

[MATJESNIC]

When we got our Spinecor through a chiro. in N.Y., exercises were involved and chiro treatments were encouraged. The doctors in Montreal told us to just wear the brace and continue to be active. But no exercises are necessary for her.

Melissa

[Kalarasy]

Pneumex is a program for scoliosis that helps strenghtening the back muscles. My son has to walk on a treadmil almost suspended to learn to walk straight and after that he is sitting in a chair and he is pulled up by the vest and is doing different back exercises. Also he is doing vibration and chiropractor adjustments. He goes there 3 times a week. And the chiropractor suggested that will be better if he will be in spinecor brace and doing the pneumex program in the same time.
We went to Romania durring the summer and my son did medical gymnastick about 3 times a week to help straighten his back muscles, he was doing exercises on the floor, in the front of the mirror, on bars and stall bars. There almost every hospital has a recuperation section and they reccomend these exercises for scoliosis. I couldn't find anytrhing like that here.

[Kalarasy]

The syrinx is really small, we went to the neurosurgeon and we need to follow up on it. I forgot to tell dr Rivard about it, but I will remember next time. He does not have a chiari or tethered cord, so I don't know. I am peaying that will stay the same size.


Celia, Thank you for your suggestions, I went to a shoe repair store, it cost 10$ to replce it and it takes 2 days. I am so worried that my son will have to be out of brace for 2 days because the shoe repair guy coldn't do it sooner. How much does it cost to order new straps? You just call and they will send them to you?
Thank you very much
Adriana

[MATJESNIC]

Adriana,
Did you go to Romania for the sole purpose of this program or was it also a visit. How long were you there for?

When Nicole went to the chiro for a few months, we didn't let him do adjustments on her because she is still growing and my husband was very uncomfortable with that. We only let him give her electric stim and gentle massage. It was more like physical therapy then chiro treatment.

Melissa

[Celia]

Thank you for your suggestions, I went to a shoe repair store, it cost 10$ to replce it and it takes 2 days. I am so worried that my son will have to be out of brace for 2 days because the shoe repair guy coldn't do it sooner. How much does it cost to order new straps? You just call and they will send them to you?


Adriana,

Is there only one shoe repair store near you ??? I can't understand why it would take 2 days :confused: That's ridiculous!!! Do you live in a small town ? When I phoned Montreal for extra pieces they sent it to me via FEDEX and I got it the next day.


What do y'all think of my new signature ??? :)

[Katya]

We went to Romania durring the summer and my son did medical gymnastick about 3 times a week to help straighten his back muscles, he was doing exercises on the floor, in the front of the mirror, on bars and stall bars. There almost every hospital has a recuperation section and they reccomend these exercises for scoliosis. I couldn't find anytrhing like that here.

In Russia they also strongly believe in this kind of therapeutical exercises and always prescribe them together with brace therapy, but my doctor here said that in the US the "official medicine" (I assume as opposed to chiropractice ?) consideres any kind of specialized exercises useless and does not offer anything of this kind. (I must say, however, that he did say that it is better for a scoliotic to be physically fit rather than unfit, but I did not understand how one can get fit wearing a hard brace)

I try to teach my daughter some exercises that I remember from the school for kids with scoliosis that I attended there when I was a kid. These exercises remind me of some Pilates exercises: they also have to be done slowly and carefully rather than fast.

But I do not remember any exercises on bars... Are they on balance?

This summer we are planning to go to Russia to visit the scoliosis center there and possibly undergo some procedures like electro-stimulation, deep tissue massage and some other that I do not see offered here (but maybe I just don't know where to look).

Katya

[cherylplinder]

Adriana,
Yes, do remember to tell Dr. Rivard about it. It can be the cause of scoliosis. I learned a little about this from the website www.asap.org. I didn't really understand the ins and outs of this.
Can you educate me?

Mom37 cited that website. Her daughter just had surgery on Monday for a chiari formation. They didn't put a drain in her syrinx. They hope it will drain now that the spinal fluid can flow freely. She wears the Spinecor, also. The surgery went well, and she is in ICU..
Cheryl

[cherylplinder]

Celia,
I love your signature!

[bizzleber]

When Nicole went to the chiro for a few months, we didn't let him do adjustments on her because she is still growing and my husband was very uncomfortable with that. We only let him give her electric stim and gentle massage. It was more like physical therapy then chiro treatment.

Melissa

I don't know a lot about chiro and/or adjustments. What are the issues? Is it dangerous, or might it make the scoliosis worse? It was suggested to me for my son, but I know a lot of the literature suggests that it is a waste of time.

[MATJESNIC]

Most chiros will tell you that they adjust their own children from the time they are born. I believe them. However, not everyone shares in this philosophy. So who do we believe? That is a difficult decision. My husband's fear is that it would be wrong to have Nicole's spine manipulated while she is still growing. Of course the chiros say this is a healthy thing. The orthopedics usually disagree with that. We don't want to make a mistake and do any harm. I am not saying it would do any harm. It is just difficult when the orthopedics are not in agreement with the chiros.

My husband and I have both been to our chiro when we have had various problems with our backs. He has been excellent and has always helped us. He has also been great with Nicole for deep massage and electric stim. But we just don't feel comfortable having him give her adjustments because we weren't brought up like that.

Melissa

[desheah]

i'm trying to plan out my health insurance ins and outs for next year. i have a medical reimbursement account that i can set up pre-tax. i believe that my health insurance will pay for most things, but i want to be on the safe side. okay, long intro, but my question is for those of you who have had to get replacement parts for the spinecor brace from montreal, could you tell me what you got replaced and how much it cost?

thanks so much,
deshea

p.s. love the signature, celia! ;)

[cherylplinder]

Deshea,
Love your signature, too!
Why is casting not used more? ! I just don't get it!

[MATJESNIC]

I think we bought a strap when it was added to her brace. But I don't remember the cost. I have to go look it up. We bought replacements for the thigh bands in N.Y. and I remember it was expensive.

Melissa

[Celia]

love the signature, celia!


Thanks Deshea/Cheryl !

I couldn't really write their names across the sky, could I ? :D

[gerbo]

Most chiros will tell you that they adjust their own children from the time they are born. I believe them. However, not everyone shares in this philosophy. So who do we believe? That is a difficult decision. My husband's fear is that it would be wrong to have Nicole's spine manipulated while she is still growing. Of course the chiros say this is a healthy thing. The orthopedics usually disagree with that. We don't want to make a mistake and do any harm. I am not saying it would do any harm. It is just difficult when the orthopedics are not in agreement with the chiros.

My husband and I have both been to our chiro when we have had various problems with our backs. He has been excellent and has always helped us. He has also been great with Nicole for deep massage and electric stim. But we just don't feel comfortable having him give her adjustments because we weren't brought up like that.

Melissa

I am aware of chiro's doing good things with adult backs, being able to relieve backpain where others failed. I have also seen a chiro at work with Lisanna's back, and despite her terrific selfconfidence, I knew from what i saw that it was never going to make a difference, also as in one swift movement she was also going to straighten the feet, kneecaps, pelvis, skullbones!!! What a scam!!!! One problem seems to be that chiropracrtic treatment is not standardised and lots of different approaches seem to come under the same banner, which means it is very difficult to compare, or make general statements

[MATJESNIC]

The Chiros we deal with have never claimed they can straighten a spine. But I have heard that some have made that claim. I agree that they have given relief to so many people in back pain. I really trust and respect the Chiros that my husband and I occasionally go to. When Nicole turned her neck a funny way and was in pain for 3 days, they were the ones who applied the right amount of moist heat, electric stim, and eventually gentle massage. They knew she didn't need an x-ray because she hadn't been in an accident.
But Nicole's ped. wanted one. So we wasted the radiation on her and of course it was nothing. This was the same ped. who noticed a small curve in Nicole's spine and didn't order an x-ray or tell us to see an ortho. "Come see me in 6 months." Over-reactive in one situation, under-reatcive in another. Both times, wrong call. Sorry for this rant. Barely awake, don't know why I am going on and on.

Now it's my turn to say,"Do you like my new signature?" The one I have on Spinekids is so much better. Check it out.

[gerbo]

some doctors can seem to be so uncaring and so uninterested (and sometimes so wrong) that i can so understand that peole get driven towards alternative practitioners, who can indeed be so more caring, so much more openminded. It is our experience as well, the orthopaedics we have been dealing with don't give a damn about anything and are happy to wait till its time for surgery. The only person we are happy with is mr Mills who fits the spinecor and is ever so meticulous in all he does, and spends lotrs of time on Lisanna when he sees her.

Hope you get some sleep

gerbo

[MATJESNIC]

Gerbo,

You are funny!! You told me to get some sleep when I just woke up!!

[bizzleber]

When we got our Spinecor through a chiro. in N.Y., exercises were involved and chiro treatments were encouraged. The doctors in Montreal told us to just wear the brace and continue to be active. But no exercises are necessary for her.

Melissa

So is it the general impression that the spinecor doctors in Montreal don't prescribe an exercise regime for their patients, or just not for Nicole? Have any other spinecor patients, using other doctors, been given an exercise program by their doctor, or is everyone told to just wear the brace?

[cherylplinder]

I asked specifically about the exercises. They told me that the brace itself was 24 hour physical therapy.

[Celia]

Now it's my turn to say,"Do you like my new signature?" The one I have on Spinekids is so much better. Check it out.

Melissa,

I *love* your signature on Spinekids! It has the following prayer:

God grant me the serenity to accept the things I cannot change, courage to change the things I can and wisdom to know the difference.

[gerbo]

re spinecor and exercises; the official line is that daily activities and sport done whilst wearing the spinecor is as good as any exercise. So UK and canadian centres will not prescrive exercises.

Saying that, there is a physioprogramme associated with spinecor, which was developped by users on the continent (of europe) where there is more a tradition of exercising for scoliosis. There has been no study comparing outcomes with or without exercises. The exercises are designed to exacerbate "the corrective movement", partially by certain movements (turning, sideshifting and lateral bending) whilst at the same time breathing deeply to enlarge the correction (bit like schroth??)

[LindaRacine]

My husband and I have both been to our chiro when we have had various problems with our backs. He has been excellent and has always helped us. He has also been great with Nicole for deep massage and electric stim. But we just don't feel comfortable having him give her adjustments because we weren't brought up like that.

Melissa
Hi Melissa...

Although I suspect it probably isn't harmful, electrical stimulation was found to have the same outcome as no treatment in a large study some years ago. So, if you're paying extra for it, you might want to reconsider.

Regards,
Linda

[MATJESNIC]

I think electric stim is great for loosening up muscles. It's like a bunch of little fingers doing rapid massage. I never believed it to have any purpose other than that.

[structural75]

If this explanation helps anyone at all, here it is...

Electric stimulation delivers an intermittent impulse to cause the muscle fibers to contract, followed by a relaxation response. It is meant to interupt nerve impulses creating the chronic contraction in spamadic, cramping or just plain "tight" muscles. Its effects are short term at best usually... purely palliative effect if that. As Linda R said, not worth the time unless it's "free of charge".

Hi Bizzleber,


I don't know a lot about chiro and/or adjustments. What are the issues? Is it dangerous, or might it make the scoliosis worse? It was suggested to me for my son, but I know a lot of the literature suggests that it is a waste of time.

It seems that chiropractic draws a lot of confusing and mixed responses so maybe this might help in answering your question. (By the way, I'm not a chiro, nor do I have any bias or aversions towards it... all things have their appropriate and limited uses.) I do however have a working, educated and professional understanding of the musculoskeletal body, so an explanation of what chiropractic adjustments are actually doing might help lend some clarity to its intended use and misuse alike.

Vertabral joints (we'll limit it to that for now) have varying ranges of motion in respective portions of the spine. When a joint is put through a range that the nervous system deems unacceptable or dangerously compromising it will send messages, or impulses, to the muscles surrounding the joint to immoblize it... essentially 'fixing' it in place. The end result, you can't turn your head one direction, or bend over, etc. Sometimes it's a nagging constant pain, sometimes radiating to other regions if it is a true nerve impingement. (Studies have shown only about 20 - 30% of pain comes from actual nerve entrapment, i.e. - pinched nerve). Either way, it will inhibit those vertabrae involved from moving properly, if at all.

The common phrase, and misnomer, is that our back is "out" (a.k.a. - subluxation). It's not that it's "out", but rather the articular facets (joints) are 'fixated' either; open, closed, translated or a combination thereof, all to varying degrees. In fact, a vertabrae can be in perfect "alignment" to it's neighbors but be fixated, which will carry the same consequences.

Adjustments will usually, but not always, 'free' the fixation by quickly stretching the ligaments and joint capsules surrounding the joint. Sometimes it lasts, sometimes it doesn't. What it does not do is address the actual cause of the fixation (the tissue positioning the bones), which is why so often the problem will return in the same regions, or the strain will be transferred throughout the spine elsewhere. Thus the need to continue receiving adjustments, and thus the reasoning why one should cease treatment if it doesn't show lasting improvement within about a month of care.

The 'popping' sound is a process called cavitation. As the joint is seperated slightly a negative space is created within the capsule and gas is released to fill the void. Popping sounds do not necessarily mean that an adjustment was successful or properly done, nor is it necessary to hear the pop to achieve a successful adjustment.

Will it help/harm scoliosis? No comment by me on that one. I'll say this, adjustments done on a regular bases are interpretted by the body as a form of whiplash. They should be used sparingly, when necessary. If the scoliosis is accompanied by something such as Chiari, it is an absolute no no!

My personal opinion on adjusting kids... wouldn't let ANY chiro, even the best, adjust my daughter's spine. Inappropriate and unnecessary at those stages of early development. If I had to I would bring my child to see an Osteopath for an adjustment... they have more diverse methods for "adjusting" vertabrae that don't involve cracking, popping or thrusting things back into place. (Vertebral adjustments began with Osteopathy, not chiropractics)

Hope that lends a bit of clarity on the "what", "why" and "how". I find it helps to know those three things before answering "when" and "where".

Take Care,
Structural

[MATJESNIC]

Structural,

Thanks for taking the time to explain. I have been fortunate in that the times I have turned the wrong way or done something to my back, the chiro has been able to help me in only about a handful of visits.

I didn't know that a D.O. could help in this area.

Melissa

[structural75]

Melissa,

D.O.'s in the U.S., as I'm sure you know already, are equal to M.D.'s. All of the D.O.s receive some training in manipulative treatment, but only a small few pursue that approach, develop the skills and bring it into their medical practice (And frankly, only a small percentage of them are talented at what they do, as with any manual/hands-on practice.). Those that do usually limit their medical practice strictly to manipulation... some go on to do another 4000 - 5000 hours of training to become a cranial specialists (Cranial Osteopathy).

It's more prevelant in Europe to find Classical Manipulative Osteopaths (as it was originally intended by its founder, Andrew Still, M.D.) than it is to find a chiropractor. It's the opposite here, but they do exist. They can do everything the chiro does and then some, one big difference being the premise of their work and how they perform it.

My wifes OB/GYN is a D.O. who also occassionaly utilizes gentle manipulations in his practice. It's comforting for us to know the person doing them is also medically knowledgable.

Best,
Structural

[Celia]

Structural,

How does one go about finding a reputable D.O. ?



Melissa,

Good luck tomorrow and give us an update when you can!

[LindaRacine]

Celia...

Not that it means everything, but there are several DOs who are members of the Scoliosis Research Society.

Regards,
Linda

[structural75]

Melissa,

I'll respond more specifically to your question later... putting my daughter to bed now.

Here's a link on Osteopathy... a very, very reputable one at that. (kind of the grandma of Osteopathy if you will)

http://www.osteopathiccenter.org/scoliosis.html

Talk soon,
Structural

[gerbo]

what does DO stand for??

[Celia]

I would think Dr. of Osteopathy :D

[mrf]

Okay - so we did it. My daughter (age 12 risser 0) was fitted by Dr Deutchman in New York with Spinecor. Her out of brace x-ray showed top curve of 28.5 and bottom of 22.6 (a small progression since her initial x-ray in September which was at 25). After Spinecor brace - top 23.3 bottom 18.1. Not a huge correction - nobody was doing cartwheels but the Dr was (mildly) pleased. Again, I was hoping for much more but am glad there was some correction to see. As others have said it's amazing to see any correction from a "simple piece of elastic." I'm still so nervous about the brace - The cynic in me thinks there may have been some exaggeration of the curve one way or the other to show a correction - I know it's a trust issue that I need to deal with. (Part of my problem is that last month the orthopedist who fitted her with the TLSO measured her inTLSO brace at 16 - a number I like much better and was hoping to still see this time with Spinecor - When I call the ortho to update him is he going to give me the "I told you so" speach?)Dr. Deutchman did say that often the numbers go up and down depending on the child's growth etc and not to get too hung up but when the numbers are the only thing we have to base success on, it becomes somewhat irrational - like watching the stock market every day. I also can't get over how flimsy the brace is - as if it's so easy to put it on too high above the hips or strap it on too loose. But my daughter seems to be okay with it and is able to put it on herself. She even wore the brace to her basketball game last night with no problem.

Dr Deutchman's office does vestibular testing - not sure if others do this as well. At first I thought it was inconsequential, but I must say that I did see that one eye reacted differently than the other when tested. The relationship between the back and eyes/ears seems to make some sense. He gave her various physical therapy exercies to do so we are going ahead with that too. All in all an exhausting experience. I continue to struggle to maintain a positive attitude - even though on the inside I'm still unsure. Catch me in 2-3 years - I hope to be a little more decisive then!!

[structural75]

That's correct, Doctor of Osteopathy. The equal to M.D.s in the U.S. (qualified to practice internal medicine and perform surgery.) Just like M.D.s, D.O.s perform residencies and internships alongside their counterparts, and may continue into any area of specialty... neurology, pediatrics, ob/gyn, orthopedics, etc. The primary difference in their training here in the U.S. lays in the whole systems view of the body as it relates to healthy function and disease (i.e. - How does illness/disease of one organ or system affect all the rest?... for example). And again, it also teaches skills for manual diagnosis and treatment (Osteopathic Manipulative Techniques - OMT)

Not the same as Doctor of Chiropractics (They have Doctorate degrees but are not trained as physicians, surgeons or practitioners of internal medicine in any way.) Their title is often misleading.

[gerbo]

this http://www.bmj.com/cgi/content/full/319/7218/1176 link gives an interesting overview re osteopaths and chiropracters. Just for fun, (and further clarification), follow the links at the end towards the letters.

[structural75]

I read the article and the threads at the end. I wouldn't say it clarified anything... but rather confuses the matter more by lumping the two disciplines into the same category. The same has been done in writings about my own profession, comparing it to massage therapy. Having been formally trained in both I can say quite certainly that they are worlds apart.


A response to that article was given by an Osteopathic Physician (U.S. trained/M.D., allopathic equivilant). It read as follows:


It was with interest that I read the review of osteopathy and chiropractic by Andrew Vickers and Catherine Zollman. I am an Osteopathic Physician in the United States and my husband is a Chiropractor. While it is true that there are commonalities in the techniques used in chiropractic and osteopathy around the world there are also significant differences, and that is especially true in the United States.

Since the authors chose to identify that Osteopathy and Chiropractic were both systematiised in the United States they should have acknowledged the current practice of Osteopathy in the States and the reason for the differences in practice and title of D.O.'s (Doctor of Osteopathic Medicine) in the US and in Europe.

Andrew Taylor Still was an MD trained in the practice of medicine. There was a split in early Osteopathy when the use of pharmaceuticals was introduced into the curriculum. And that led to the development of the European branch of Osteopathy which remained solely manipulative and drug free.

There are D.O.'s who practice as neuromusculoskeletal medicine specialist's in this country, and in those cases there are many similarities between how many chiropractors might practice. The diagnosis and treatment of somatic dysfunction is at the core of the practice of Osteopathy around the world. An examination of this concept would have been useful to readers. More helpful also would have been the statements of the philosophy undergirding each profesion and the definition of each by the professions themselves.

Schools of Chiropractic in the US have a heavy emphasis on nutrition in the curriculum. In the United States, Many states do license the chiropractors as Doctors of Chiropractic-it is NOT purely a courtesy title (although there are many MD's who would like it to be)but a professional licensure and designation with legal obligations a privileges.

In all, I feel that this article gives a very superficial, limited and inadequate representation of both the professions of Osteopathy and Chiropractic. From the article content aside from the high velocity technique the titles of phsyical therapist or massage therapist could have been substituted and little would change.

Sincerely, Anette Mnabhi, RN, MSN, D.O. (Doctor of Osteopathic Medicine) (USA)


The co-author of that article in the British Medical Journal then responded as follows:


Numerous responses to the "ABC on osteopathy and chiropractic" have pointed out, in short, that things are a bit different in the USA." I did actually know this but would like to point out that the paper was published in the British Medical Journal, aimed at a British audience and written under a strict word limit. Obviously, it's going to be difficult to give a full description of variations in training, qualifications and approaches in different countries of the world....

I wouldn't rely on this type of analysis/publication to educate myself on the differences/similarities between the two practices. From my extensive experience with both, I can conclude that the article was very poorly researched.

Osteopathy was founded in the mid to late 18th century by an American M.D., Chiropractic was 'conceived' in the 1890's by a Grocer and Magnetic Therapist... Very different origins, if I must say... .

[structural75]

Oh, by the way, this is a good example of how we must always consider the source of our information gathering. No one article, study, etc. is the be all, end all.

And Melissa,

I hope all of that answers your question.

structural

[MATJESNIC]

Thanks for all of that info, Structural.

We are back from Montreal. Nicole's back has stayed the same, which is good news. Since her diagnosis 16 months ago, her bottom curve has stayed near the 40 degree mark.

Her curves in-brace are 28 and 34. Her risser is still a 0. Until it is at least a 3, they can't make an intelligent prediction. She is done growing in the legs but could still have some growth left in the trunk. But it is also possible that she is done growing. I learned that just because your risser is a 0 doesn't mean that you are still growing.



Dr. Rivard doesn't believe in surgery until 50-55. He said that the fact that her back sometimes hurts without the brace doesn't mean anything. He told me to stop worrying so much. I told my husband and Nicole that if her back is stable, we will enjoy the next five months and remain positive. We are still in the game. So I am going to remain positive. I am forever thankful and grateful for Spinecor and the doctors in Montreal. Nicole is leading a comfortable, normal, active life in her brace. The only regret is that we didn't go there from day one. But we are thrilled that we go there now.

Thanks to all of you for support and concern. I really appreciate it.

Melissa

[gerbo]

"stable", that's not bad melissa, and maybe this will help you to worry a little bit less for a while. (stop worrying, ha, sometimes they just haven't got a clue these doctors :rolleyes: :rolleyes: )

and the normal, active life bit,..., thats so important!!

keep going!

gerbo

[mpj]

Hi,

Madeline and I are back from Montreal. Thanks for all the tips and advice prior to our visit. It went well. Dr. Rivard said that she had a 21 degree curve out of the brace and was down to a 9 in the brace. He was very please by this, so we are optimistic too. Madeline is doing pretty well too. She is having some problems with one snap pushing into her hip and sometimes the shoulder straps seem tight, but otherwise she is fine. I think she just needs to get used to it. She does not like to take it off, because then she has to get used to it again when she puts it on. She even wore it to part of her gymnatics practice yesterday!

We go back on Jan. 18.

Thanks again for all you help and encouragement.

Sincerely,

Sarah

[gerbo]

sounds good to me, very encouraging :D :D

[Celia]

Okay - so we did it. My daughter (age 12 risser 0) was fitted by Dr Deutchman in New York with Spinecor. Her out of brace x-ray showed top curve of 28.5 and bottom of 22.6 (a small progression since her initial x-ray in September which was at 25). After Spinecor brace - top 23.3 bottom 18.1. Not a huge correction - nobody was doing cartwheels but the Dr was (mildly) pleased. Again, I was hoping for much more but am glad there was some correction to see. Dr Deutchman's office does vestibular testing - not sure if others do this as well. At first I thought it was inconsequential, but I must say that I did see that one eye reacted differently than the other when tested. The relationship between the back and eyes/ears seems to make some sense. He gave her various physical therapy exercies to do so we are going ahead with that too. All in all an exhausting experience. I continue to struggle to maintain a positive attitude - even though on the inside I'm still unsure. Catch me in 2-3 years - I hope to be a little more decisive then!!

It wouldn't hurt to pay dr Rivard and dr Coillard a visit and make sure the brace is being properly fitted, maybe get better correction and then continue seeing Dr. Deutchman who is closer to you. What do the rest of you think :confused: As for vestibular testing....I think it's strictly a chiropractic thing and it's not done in the Montreal office.

[Celia]

Sarah,

Absolutely WONDERFUL news!!!! :D


Melissa,

What can I say ? I wish the news were better but then no change is good news too ((((hugs))))