spinecor

[michael1960]

SpineCor During a Growth Spurt

Hi Elisa

Thanks for visiting my site. I wish I had more time to spend on it. I would love to work on it full-time and keep it up to date.

Yes, a great invention, and by orthopedic surgeons.

I think the SpineCor brace is an awesome brace. My daughter wears it most of the day, and then the Boston brace at night.

However, with most research I have seen, the SpineCor brace does not do well during a child's growth spurt (maybe for a girl 11-14 yrs. old, a bit older for boys). I have not seen studies that it has been able to hold the curve from progressing, especially an aggressive curve that is 30-35 deg or more.

I know of at least two parents I met personally while my daughter was being treated that had their girls in it, one 10 and one 12, and their curves progressed significantly.

That is my only caution. I know for my daughter who is 9, and wearing it, will probably wear it much less when she is around 11, and she will wear her Boston brace (or some other hard brace) much more.

Instead of the SpineCor 15 hours per day, and the Boston brace 8 hours per day, we will probably switch it to Boston brace 15 hours per day, and SpineCor about 8 hours per day (just for school and sports).

Again, just my own personal thoughts on it, and based on some information from some studies on it.

Mike

[emarismom]

Hi all,

Just wanted to comment for those of you who have younger kids who are waiting fot the "dreaded" growth spurt. Emily has been in the Spinecor for 3 years+ now. On her last xray (8/2010) she measured 31 degrees which is the highest she has ever been but technically still within the margin of error for her original curve from 2004 (28 degrees). She has since started her period, which is a good thing as hopefully now the growth will slow some. Within the past 6 months she has grown about 3 inches in height, but may still be a Risser 1. As you can see, her curve did bounce back to orginal measurements during her growth spurt.

During the three years Emily has been braced, her curves have ranged from 16-28 degrees. We never got the amazing results that some have gotten, but at least I know I have tried to hold the curve with a brace that hasn't been too restrictive.

Our next appointment will in late Dec/early January. I think this one will give us a definite idea of whether or not she is already or will progress.

[jstonis]

My daughter (Ashley) who just turned 13 received the SpineCor brace yesterday from Cincinnati Children's. She will have to wear it for 18+ months as she is pre-menstrual. When she wears it, the straps really compress a lot on her right side (when I am facing her). The post-brace xray definitely offers correction and the Orthopedic physician and Orthotist were quite happy with the results. Sooo, I am happy, but I have what might be a silly question.

Is there any concern with the compression of internal organs. I don't want to fix one problem and cause another. Sorry - I come from a software development background and we do this all the time (not on purpose of course).

Thanks,
Jon Stonis

[Pooka1]

In our case, the above isn't correct: 10 yr old daughter, 44 & 42 degree curves July 2011, 14 weeks exercise (we didn't know about the Chiari and SM until 10 days ago) and she's corrected to 35 & 27. Early days yet, but we proceed with conviction.

I don't mean to speak for Celia but I suspect she is talking about permanently correcting the curve with PT. There are any number of temporary improvements with PT but there is no evidence it is permanent. There is no reputable person who would claim PT alone can hold a curve through the adolescent growth spurt as far as I know. Hard braces fail at that in some cases so PT doesn't really stand a chance. SEAS, Schroth, Torso rotation (McIntire, NOT Mooney), etc. are PT modalities that admit PT is not enough.

As with the other post that I think you misinterpreted, there is a language involved with discussing this and I suggest you are misunderstanding these other people's comments and implying they don't know what they are talking about. These people do have a certain amount of knowledge that comes for experience. You will have that after some time also. Nobody is born knowing any of this stuff.

[TAMZTOM]

10 yr old shows curve improvements w/o brace.

Many assumptions, misinterpretations and slurs in your response, thanks. I'm learning so much from (in particular) many mothers in here and I've learned that many of those you seem to deem "reputable persons" are lacking. "PT doesn't stand a chance because hard braces" fail! Logic lacking. All I posted were facts about my daughter.

I've read posts from GERBO, his daughter also Spinecor braced in Sheffield. Knowledgeable. Would benefit from contact with him.

I don't mean to speak for Celia but I suspect she is talking about permanently correcting the curve with PT. There are any number of temporary improvements with PT but there is no evidence it is permanent. There is no reputable person who would claim PT alone can hold a curve through the adolescent growth spurt as far as I know. Hard braces fail at that in some cases so PT doesn't really stand a chance. SEAS, Schroth, Torso rotation (McIntire, NOT Mooney), etc. are PT modalities that admit PT is not enough.

As with the other post that I think you misinterpreted, there is a language involved with discussing this and I suggest you are misunderstanding these other people's comments and implying they don't know what they are talking about. These people do have a certain amount of knowledge that comes for experience. You will have that after some time also. Nobody is born knowing any of this stuff.

[TAMZTOM]

Sheffield

yeah, it will be Andrew Mills, the orthotist who heads Spinecor,, he's travelling to the states all the time trying to ensure that all these chiropracters are using the spinecor properly

Very reassuring that my daughter is to be fitted in 2 - 3 weeks by the same orthotist...that he's been at Sheffield for at least 5 - 6 years, whoaaaa! (This is our third attempt at a brace; "reputable persons" (spine surgeons and orthotists and physios) conspired previously to make two two braces that INCREASED my daughter's curves when IN-BRACE.

Does anyone know how I could contact GERBO? He hasn't posted here for a few years.

[leahdragonfly]

Very reassuring that my daughter is to be fitted in 2 - 3 weeks by the same orthotist...that he's been at Sheffield for at least 5 - 6 years, whoaaaa! (This is our third attempt at a brace; "reputable persons" (spine surgeons and orthotists and physios) conspired previously to make two two braces that INCREASED my daughter's curves when IN-BRACE.

I am really confused by your remarks about people conspiring to increase your daughter's curves in brace--would you mind elaborating what happened please. I was thinking you said your daughter was just diagnosed a month ago, so do you mean in a month's time you had two other braces given to you that increased her curve in brace? I guess I just don't understand what you are saying?

Good luck,

[Pooka1]

We've had 3 attempts at bracing, all 3 made badly. Can't say much more on this as the two involved practices are now being investigated by the appropriate authorities.

I'm sorry you had to learn the hard way that science is the only game in town. The field of scoliosis treatment is chock full of lay "geniuses." Schroth was invented by a lay person and it shows.

[TAMZTOM]

Proof

Gayle, here is what he wrote on teh Hawes thread...



If he got two braces from Schroth as opposed through a surgeon and a reputable orthotist then the braces might not be correctly fitted. Recall Schroth appears to uniformly push the Cheneau even when there is some evidence that is inappropriate or certain curves.

It is possible that the curves might be worse in brace than out of brace when you don't stick with reputable medical professionals but I still doubt the testimonial. It would be hard to believe they can be that incompetent but maybe.

Official investigation after x-ray proof of "reputable medical professionals" fitting brace that distorted entire body. It has been wonderful, now, meeting with the spine surgeon in Sheffield and we look forward to being fitted for the Spinecor soon.
Almost all the posts I've read on this thread are from hugely motivated and positive parents of kids with scoliosis. Pooka, it would be salutary if you followed suit; negativity and sniping are counter-productive for all concerned. Have a nice day.

[TAMZTOM]

Assumption

I'm sorry you had to learn the hard way that science is the only game in town. The field of scoliosis treatment is chock full of lay "geniuses." Schroth was invented by a lay person and it shows.

Negligent bracing does not address the efficacy of Schroth.

The last brace was measured and fitted by a spine surgeon and 2 orthotists in an NHS hospital.

[Pooka1]

The last brace was measured and fitted by a spine surgeon and 2 orthotists in an NHS hospital.

So the surgeon and both orthotists admitted that the in-brace curves were bigger than the out of brace curves for two braces they just made? Did they charge you for the braces?

ETA: Was the surgeon an experienced pediatric orthopedic surgeon or a random surgeon?

[TAMZTOM]

Spinecor bracing and exercising to correct scoliosis

So the surgeon and both orthotists admitted that the in-brace curves were bigger than the out of brace curves for two braces they just made? Did they charge you for the braces?

ETA: Was the surgeon an experienced pediatric orthopedic surgeon or a random surgeon?

This conversation is straying from a constructive exchange of ideas. Pooka, if you are genuinely interested by the tangential issues, I'll correspond with you by private message or email. You purport to be "Too factual for some." I have facts.

Anyway...

I'm continuing to read through the entire thread and am learning so much. Thanks to everyone who has posted their experiences with the Spinecor and dealing generally with this condition that affects our children.

[Pooka1]

Hey! If having two braces in a row that made your daughter's curve WORSE in brace is tangential to the topic of this forum/thread then I am at a loss to know what is on point.

I can assure you I am likely not the only person who wants to now how that happened and would be grateful to hear the details. I would have guessed chiros fitted the brace but you said it was a surgeon and his orthotists.

I have never seen a testimonial wherein a child's curves were WORSE in brace. Not one. I invite folks to chime in if they have ever encountered that on forum or in real life.

I think there is a rational explanation for all this. Did you mean to suggest that the curve continued to advance even in brace? I am not sure how common that is but I suppose you could get that if the brace was loosened over time.

Good luck. There are larger curves than your daughters that have stopped progressing on their own. We had 2 or 3 testimonials on that, one in the low 50*s that reached that angle and hung there for at least two decades. So it isn't a given that your daughter will need fusion for progression. I don't know if that is true for the other conditions as I have no idea or knowledge about that. It could be that addressing the neuro issues stops the scoliosis progression but again, I have no idea. If watching and waiting on the Chiari and syrinx is a viable option then it is a viable option.

[TAMZTOM]

Reply

I've cleaned the formatting of this post, see below

[TAMZTOM]

Hey! If having two braces in a row that made your daughter's curve WORSE in brace is tangential to the topic of this forum/thread then I am at a loss to know what is on point.

Spinecor and exercise.

I can assure you I am likely not the only person who wants to now how that happened and would be grateful to hear the details. I would have guessed chiros fitted the brace but you said it was a surgeon and his orthotists.

As I said, if you want to contact me by PM, I'll give you the facts. I don't want to nit-pick, but "guessing" doesn't sit well with your "Too factual for some." Enough...apologies for that snipey comment.

I have never seen a testimonial wherein a child's curves were WORSE in brace. Not one. I invite folks to chime in if they have ever encountered that on forum or in real life.

Go to page 34 and 35 of THIS FORUM. Read the posts.

I think there is a rational explanation for all this. Did you mean to suggest that the curve continued to advance even in brace? I am not sure how common that is but I suppose you could get that if the brace was loosened over time.

Professional negligence is the easily understandable "rational" explanation you seek. Credulity in the actions of those with titles, letters and testimonials has led to many a calamity.

Good luck. There are larger curves than your daughters that have stopped progressing on their own. We had 2 or 3 testimonials on that, one in the low 50*s that reached that angle and hung there for at least two decades. So it isn't a given that your daughter will need fusion for progression. I don't know if that is true for the other conditions as I have no idea or knowledge about that. It could be that addressing the neuro issues stops the scoliosis progression but again, I have no idea. If watching and waiting on the Chiari and syrinx is a viable option then it is a viable option.

Many thanks for your kind wishes. We've had an almightily trying few months. My own opinion (formed after months of learning, information from parents, surgeons, physios, orthotists, chiropractors, et al) is as follows:[*]My daughter (MD) is very competitive, took to Shroth exercise with a vengeance; she's a talented track and cross country runner, used to training.[*]We do not know for sure whether the Chiari 1 and Syringomelyia (SM) caused the scoliosis; most likely, yes, but scoliosis can create a downward pressure that, together with "unwellness and difficulty eating for 5 months", possibly created a growth delay that resulted in the brain growing faster than the housing part of the skull..we'll never know[*]The first x-rays were taken by a radiographer who 'manipulated' MD into her scoliotic posture, this giving a distorted impression of the degree of curvature and pelvic tilt..the orthotists used this and rushed (incorrect) manual measurements to make the brace[*]Approximately 6 degrees of spinal flexibility in anyone; 44 to 35 thoracic improvement can be discounted to 3 degrees of structural correction; 42 to 27 degrees improvement on the lumbar curve...say 9 degrees REAL correction, but, with her pelvis now horizontal, perhaps only 5 degrees REAL correction...in short, we've probably only removed the postural degree of her scoliosis so far[*]Proprioception and strength: MD is phenomenal at this--her balance is cat-like, muscular control and strength staggering, determination world class, understanding well in advance of her years...totally optimistic.[*]Please remember that we're learning on our feet here, literally adapting daily...e.g., today, after studying x-ray and MRI images we received copies of last week, we STARTED really focusing on hitting the structural scoliosis with appropriate exercise..
Wondering if I've gone over the word limit...I'll continue if anyone is following all this.