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Christine2
24th August 2009, 09:34 PM
Hi CD !!! long time, I hope all is well with your family!!! Still no sale on the cottage UGH!
Pat just posted some good news on NSF.


I did not read through the closed Spinecor thread. Just skimmed quick and the spinecor does seem to beneifit JIS more than AIS.

Frankly I am not looking for a complete fix, just to keep the curves as low as possible. There are folks that are having good results. Will it stay that way during the growth spurt?? Nobody knows but I do feel good about the decisions I have made so far.

My Daughter needs to be in a brace, She is very comfortable in the Spinecor

concerned dad
24th August 2009, 10:57 PM
Hi Christine, not sure if you intended that as a PM or not but I'll reply here anyway:)

Hope you have luck with the cottage sale. This is the season to do it. I've spent much of the summer at my lake house in the adirondacks and loved every minute of it. I actually stopped thinking about scoliosis for a while although my daughter has an appointment Wednesday that should be very telling.

I agree with your assessment of the SpineCor and would possibly add pain relief for adults as an additional potential use. You know my thoughts and experience with AIS and the Spinecor so I wont reiterate here :D

You are right to feel good about the decisions you've made so far. I wish you and your family continued success.

Christine2
24th August 2009, 11:07 PM
Thanx Cd

The realtor said the same thing. Fingers crossed. Good luck at your appt.

My post was not intended to be a PM. I wanted to open another Spinecor thread.

Sealy
25th August 2009, 03:49 AM
Hey Christine,

I'm so glad you started a new thread for the Spinecor brace. :D I read on the NSF that your daughter is having problems with the bodysuits? Deirdre has always had problems with the bodysuit snaps so we've converted all the bodysuits to velcro fasteners. It really makes a difference for us.

We just back from vacation and I thought it would be a wonderful opportunity to share some pics of Deirdre's back.

http://i41.photobucket.com/albums/e251/sealy25/th_Photosfrom2009-197.jpg (http://s41.photobucket.com/albums/e251/sealy25/?action=view&current=Photosfrom2009-197.jpg)
http://i41.photobucket.com/albums/e251/sealy25/th_Photosfrom2009-207.jpg (http://s41.photobucket.com/albums/e251/sealy25/?action=view&current=Photosfrom2009-207.jpg)

http://i41.photobucket.com/albums/e251/sealy25/th_Photosfrom2009-387.jpg (http://s41.photobucket.com/albums/e251/sealy25/?action=view&current=Photosfrom2009-387.jpg)
http://i41.photobucket.com/albums/e251/sealy25/th_Photosfrom2009-397.jpg (http://s41.photobucket.com/albums/e251/sealy25/?action=view&current=Photosfrom2009-397.jpg)

tonibunny
25th August 2009, 02:43 PM
They're amazing photos Sealy, her back looks wonderful. Fingers crossed she maintains that correction.

Min Mehta is one of the most amazing women in the world!!

Sealy
25th August 2009, 03:10 PM
Thanks Toni :squeeze:

*Thank God* for Min Mehta, the NSF research information site and the Sauk website, otherwise I would have never known about Min Mehta's serial casting. I'm also grateful to Dr. Rivard and Dr. Coillard for making this journey a lot easier to endure with the flexible Spinecor brace which Deirdre has been wearing since she turned 5. For those that don't know our story, she started out with a 60 degree curve at the age of 19 months.

concerned dad
25th August 2009, 04:14 PM
My daughter was diagnosed with Scoliosis at age 14. She had a 38 degree curve. She was Risser 0 (however subsequently read skeletal maturity indicators suggested she was considerably more mature - not the least of which was the fact she was 6 inches taller than my wife). We researched different options and settled on the SpineCor. We went to Montreal for treatment.
At the 4 week follow up visit I asked for and received a copy of the x-rays.
We had been told her in-brace correction was 26 degrees.
I used the software on the xray distribution disk to look at the xrays. I read the curve, in brace, as 36 degrees.
I sent the xrays to an SRS orthopaedic surgeon who confirmed my measurement.
We took her out of the brace.
A 2 degree in brace correction was not worth the burden of wearing the brace.
I lost all faith in the doctors research. My daughters xrays are very straightforward, high quality, and easy to read. There are no complicating compensatory curves. The measurement should be un-ambiguous. How can I trust their research results - the most important variable in their research is their measurements of COBB angles.

I can overlay the two xrays (before and inbrace) and the only difference is the brace rivets.

Had she worn the brace for a significant period of time before I discovered the grossly overstated inbrace correction I would have taken legal action.

So, based largely on reports from forum participants here and at NSF, the use of the SpineCor for young, immature, children seems reasonable to persue. It may also play a role in pain management for adults with scoliosis.
BUT, I would have strong reservations about the use of the SpineCor for kids going through (or past) their major growth spurt. At NSF, there are several high profile failures of the SpineCor during this period of growth. Weiss reports of 100% failure during this period of growth in 12 patients (Sealy I would like to hear about Weiss's comments on this if you can share them). There is one person on NSF who recently reported success with the SpineCor and her daughter. However, she braced her at 20 degrees apparently because her sister was fused. Without that family history, most folks would probably wait till 25 degrees and/or evidence of an advancing curve (the pro's and cons of that criteria are certainly worthwhile to discuss).

This is all just my personal opinion. I could be wrong and my opinions are subject to change. I am not a doctor or even in the medical field. I am just a concerned dad.

Sealy
25th August 2009, 04:59 PM
So your daughter wore the brace for 4 weeks and then stopped? As you know, dr. Rivard's native language is French and he speaks English with a very thick accent, it's quite possible there was a misunderstanding or miscommunication somewhere - 25 vs 35. The Cobb angle reading is computer generated on their system.

I don't have much time right now but when I get a chance later, I'll write down what I found out about the Weiss study. I can't quote dr. Weiss directly because he asked me not to.

concerned dad
25th August 2009, 06:34 PM
She actually wore it for closer to 6 weeks and then stopped. I didnt look at the xrays until prompted by a discussion on NSF about reading Cobb angles. Then I waited till I received confirmation of my suspicions from someone qualified to read them.
No Sealy, it wasnt a language issue. I spoke with Dr Rivard after I looked at the xrays. His response was that we were looking at different vertebrae and also it is not uncommon to have differences in interpretation of 10 degrees.
My response to the vertebrae issue is - a Cobb angle is a Cobb angle. You measure the most tilted vertebrae. In my daughters case it is very straight forward. I can see small curves being difficult to read as well as large complex curves. But, that is not the case for us.
Regarding the 10 degrees - when I overlay the two xrays they are essentially identical. Also, I had 4 inbrace xrays to look at:two from the initial fitting and two from the 4 week follow up.

By the way - The xrays are NOT computer read. The user uses a mouse to draw two lines along the base of the vertebrae you wish to measure. The computer calculates the angle between the two lines.

Sealy, did you happen to see my thread on NSF "Why I decided to brace my daughter with the SpineCor"? I looked into this brace very carefully. Sharon challenged my assessments every step of the way. Together we dug into the details of the published literature. I was convinced this brace was worthwhile. Can you imagine the pit in my stomach when I looked at the xrays and saw they were essentially identical?

I am not alleging widespread fraud. I am just sharing our experience.

But remember, the thing that "sold" me on the Spinecor was a careful review of their data. The MOST important variable is the Cobb angle. While reviewing the data there is no way for myself or anyone to check their accuracy. It is a self reported number by the researchers. It is NOT computer generated. The measurement IS subject to Bias.

Sealy
25th August 2009, 07:11 PM
Given that my daughter has been treated by dr. Rivard for the past 5 years, I have to give him the benefit of the doubt. What exactly were your expectations given that your daughter was 14 at the time and near skeletal maturity with a 38 degree curve? It’s quite possible there could have been some correction, I don’t know. You have chosen to do nothing based on discussions with your internet buddies and I hope that was the right decision for your daughter.

concerned dad
25th August 2009, 07:50 PM
I am not saying you shouldnt give him the benefit of the doubt. I hope they can help everyone they treat. I hope ours was an isolated incident.

What exactly were my expectations you ask?

Well, she was 14 and Risser 0 and our local orthopaedic guy wanted to put her in a Boston Brace immediately.
I have access to all the relevant medical journals, I dove in and started reading. This bracing literature is more statistical than medical.
I found the SpineCor, researched it, and decided to try that instead of the Boston Brace.

What I was hoping was that the brace would halt progression. I even had a glimmer of hope that she might come out of it with a slight reduction.

What I was expecting though was to be dealt with honestly. 36 is not 26. A 2 degree correction is not a 12 degree correction.

The magnitude of the initial inbrace correction is indicative of long term outcome. Would you have kept your daughter in the Spinecor if she acheived only a 2 degree correction?

I didnt decide to "do nothing" based on discussions with my "internet buddies". That difficult decision was made after several discussions with our (new) orthopaedic surgeon.

titch
25th August 2009, 07:54 PM
I'm not sure if I'm understanding correctly here, but it sounds as though the pre-brace xray was done and measured by one doctor, and the post-brace xray was done and measured by another? If that is the case, then while overlay of the xrays showed no correction, it is entirely possible that the difference in measurement did arise from differences in method, and also just in the optimism/pessimism of the different observers.

Cobb angles can indeed be read significantly differently - while it is a relatively standard method, there are still differences in how individuals measure. For example, some will take the bottom of both vertebrae, others the top of both vertebrae, others the outer edges of the 2 vertebrae, and others still the inner edges of both vertebrae (from what I have read over the years there are even a few who recommend drawing the line through the centre of the vertbrae to be used). There are also differences of opinion sometimes as to what constitutes the most tilted vertebrae in a given individual, and that is before we get to the question of whether one feels that the lines used have been accurately drawn in relation to the vertebrae, and whether the perpendiculars are indeed perpendicular.

Without ensuring that both observers are using the same vertebrae and the same part of the vertebrae, I think it is extremely difficult to determine whether 2 measurements can be compared. The typically quoted variability is +/- 5 degrees, so even assuming that one measures pessimistically and the other optimistically does mean the difference is still about as wide as it would normally get to be, but I just wanted to illustrate that differences in measurement between observers does occur. Of course if both xrays are taken and measured by the same doctor, more questions may be asked as to why such a large discrepancy occurred.

ETA: it seems I was writing this at the same time as CD, so perhaps not relevant but I'll let it stand anyway in respect of giving info as to why differences can occur in some cases.

Sealy
25th August 2009, 08:29 PM
(For some reason I can't get the figure to show: The picture shows a girl wearing the Spinecor brace. The initial fitting was done by Dr. Coillard, inventor of the brace)



Figure 1. SpineCor as adjusted by the original authors [1,2] at our centre. No changes have been made to the original adjustments unless a clear progression has been detected.

The Figure can be found on Page 2 of Spinecor vs. Natural History -- Explanation of Results, 2008

Of great concern to parents reading dr. Weiss’ study is the fact that all (100%) of the children treated with the Spinecor brace in the study had curves averaging 20 degrees and they progressed. There was essentially no difference in results between the Cheneau brace and the Spinecor brace within the first 9 months of treatment -- both braces maintaining initial curve correction for virtually all patients treated.

The one question the reader has to ask him or herself given that the brace is intended for small curves and the natural history, based on probability statistics is not 100%, is WHY?


Based on discussions with dr. Weiss and reading the two articles in question, I have come to the following conclusions. The answer can actually be found in the article! No adjustments were made to the brace until there was documented progression. The initial fitting for the study was done by Dr. Coillard who went to Germany to help out. Parents who see Dr. Rivard and Dr. Coillard know that adjustments to the brace are routinely made at follow-ups: i.e., tightening of the straps. Dr. Weiss mentioned in e-mails that the straps had to be replaced often because they became loose – even within a couple of weeks of fitting. Instead of tightening the straps when they became loose, he would just replace them altogether and adjust it to the initial markings. Finally, when there was documented progression of 5 degrees or more, Dr. Weiss actually changed the configuration of the straps – perhaps aggravating further progression?

It's weird, I know. :D

concerned dad
25th August 2009, 09:32 PM
Interesting assessment. That would suggest that wearing a poorly fitted SpineCor brace can actually do more harm than good. It is similar to the argument Dr Rivard made about the Wong study.

Did you ever discover why the US orthopaedic community largely abandoned the SpineCor? I asked our "new" ortho that question. He said something like "we were initially very excited but were not able to acheive the same results they obtained in Montreal". If that is the case, it is a shame that not one of them (the US SRS guys) published any information/data. They seem to have just plain abandoned it.

concerned dad
25th August 2009, 09:36 PM
I'm not sure if I'm understanding correctly here, but it sounds as though the pre-brace xray was done and measured by one doctor, and the post-brace xray was done and measured by another?

The pre and post xrays were read by the same doctors.

I agree with the points you make about error in Cobb angle measurements. Lots of potential sources of error, but in my daughters case, different measurers was not one of them.

Sealy
26th August 2009, 10:33 PM
That would suggest that wearing a poorly fitted SpineCor brace can actually do more harm than good. It is similar to the argument Dr Rivard made about the Wong study.

It's obvious Dr. Weiss was poorly trained to fit the brace, so I'm not really sure how he got the go a head to do the study????! Dr. Coillard did the initial fitting for the brace and there was no progression during the first nine months of treatment for children going through the adolescent growth spurt; I think this point is telling.

The two high profile Spinecor failures from the NSF that you mentioned earlier were children who were braced with the Spinecor when their curves were approacing 40 degrees and in the middle of the adolescent growth spurt.

There are independent studies by doctors in Europe which strongly corroborate Dr. Rivard's positive results.


Did you ever discover why the US orthopaedic community largely abandoned the SpineCor? I asked our "new" ortho that question. He said something like "we were initially very excited but were not able to acheive the same results they obtained in Montreal". If that is the case, it is a shame that not one of them (the US SRS guys) published any information/data. They seem to have just plain abandoned it.

It is mystifying, but then the same question could be posed about serial casting on infant children and possibly saving a life? I don't see doctors rushing in droves to use this form of treatment despite overwhelming evidence that it works in the majority of cases and even --- *GASP* -- CURES!! ;) By the way, Dr. Rivard is also an SRS doctor.

tonibunny
26th August 2009, 11:15 PM
It is mystifying, but then the same question could be posed about serial casting on infant children and possibly saving a life? I don't see doctors rushing in droves to use this form of treatment despite overwhelming evidence that it works in the majority of cases and even --- *GASP* -- CURES!! ;) By the way, Dr. Rivard is also an SRS doctor.

I too find this astounding. Serial Casting has been used in the UK for over 30 years now, and it works. My only guess is that progressive infantile idiopathic scoliosis is very rare and many hospitals will never have come across it before, let alone invested in an EDF casting frame :(

Sealy
26th August 2009, 11:24 PM
My only guess is that progressive infantile idiopathic scoliosis is very rare and many hospitals will never have come across it before, let alone invested in an EDF casting frame :(

Good point Toni!! However, the cynic in me is thinking: not as rare as congenital scoliosis in young children and yet look at all the attention the VEPTR and dual/single growth rods is getting at SRS meetings and conferences around the world. How expensive could a casting frame be???!

tonibunny
26th August 2009, 11:45 PM
Good point Toni!! However, the cynic in me is thinking: not as rare as congenital scoliosis in young children and yet look at all the attention the VEPTR and dual/single growth rods is getting at SRS meetings and conferences around the world. How expensive could a casting frame be???!

Space could be a factor, too. Those EDF frames are huge, they take up quite a lot of space in a casting room.

Here in the UK kids get referred from their local hospitals to the few specialist centres such as Stanmore, who have the frames. Perhaps other countries don't have a health service that would allow this ease of communication between hospitals? I don't know :(

concerned dad
27th August 2009, 05:40 PM
There are independent studies by doctors in Europe which strongly corroborate Dr. Rivard's positive results.




I have not seen much in the way of independent studies. Do you mean the paper from Greece? or are there others I've missed.

Sealy
28th August 2009, 04:14 PM
For the sake of not repeating myself over and over again, I've started a website so that I could file and organize my thoughts re: scoliosis in a neat little package :D Hopefully it will help a few parents along the way.

I've listed the articles that I'm familiar with on the following web page. I'm not aware of a Greek study but if you point me in the right direction, I'd be more than happy to add the article to the site. I am also open to suggestions/changes to the website, so feel free to comment.

http://early-onset-scoliosis.com/SpinecorLiterature.aspx

mark
29th August 2009, 01:08 AM
Sealy, keep on keeping on, i love your passion for your daughter, i just hope you manage to keep her away from the surgeons knife

Yours in lots of respect

mark

Sealy
31st August 2009, 12:25 AM
Thanks Mark! :squeeze: I hope so too. In the meantime she's a typical normal kid; scoliosis is not front and centre in her life. :D Here's a recent photo of Deirdre with her brother taken by a newspaper photographer.


http://d.yimg.com/kq/groups/15511209/sn/1471557781/name/9536eb594976979055f92826b099.jpg

mark
31st August 2009, 05:50 PM
Fantastic pic Sealy

concerned dad
31st August 2009, 07:07 PM
For the sake of not repeating myself over and over again, I've started a website so that I could file and organize my thoughts re: scoliosis in a neat little package :D Hopefully it will help a few parents along the way.

I've listed the articles that I'm familiar with on the following web page. I'm not aware of a Greek study but if you point me in the right direction, I'd be more than happy to add the article to the site. I am also open to suggestions/changes to the website, so feel free to comment.

http://early-onset-scoliosis.com/SpinecorLiterature.aspx


The Greek study I mentioned is here
http://www.scoliosisjournal.com/content/4/S1/O35

You website can serve as a useful collection of the literature regarding the SpineCor. The only problem I see is the lack of discussion/analysis about the papers. You offer an analysis about the papers with adverse evidence regarding the effectivness of the brace, but not an analysis/discussion of any shortcomings of the pro-spinecor papers.

I would think that folks considering the brace would want to see both sides of the story.

bara
31st August 2009, 07:28 PM
Fantastic pic Sealy

Took me a minute or two to realise that it's upside down ... Sorry - it's been a long day!
;)
B

concerned dad
31st August 2009, 07:45 PM
I would think that folks considering the brace would want to see both sides of the story.

I attempted to do something like this in the thread
"Why I decided to brace my daughter with the SpineCor" at NSF
http://www.scoliosis.org/forum/showthread.php?t=8216
Unfortunately, the forum format is not a particularly easy thing for quick reference.

So, take my comment as just that, a comment. No real suggestion to offer. Sorry.

GillyG
31st August 2009, 10:22 PM
Took me a minute or two to realise that it's upside down ... Sorry - it's been a long day!
;)
B

Haha, I had to go back and take another look - I never realised :p Wonderful shot of your lovely kids Sealy :D

Pancake
31st August 2009, 11:14 PM
I would think that folks considering the brace would want to see both sides of the story.

Not necessarily.

Sealy
1st September 2009, 03:51 AM
Took me a minute or two to realise that it's upside down ... Sorry - it's been a long day!
;)
B

Yes, they were upside down and they lived to tell :D

Sealy
1st September 2009, 03:52 AM
Haha, I had to go back and take another look - I never realised :p Wonderful shot of your lovely kids Sealy :D

Thanks Gilly! :D It's one of those shots that doesn't come around too often.

Sealy
1st September 2009, 04:03 AM
The Greek study I mentioned is here
http://www.scoliosisjournal.com/content/4/S1/O35

You website can serve as a useful collection of the literature regarding the SpineCor. The only problem I see is the lack of discussion/analysis about the papers. You offer an analysis about the papers with adverse evidence regarding the effectiveness of the brace, but not an analysis/discussion of any shortcomings of the pro-spinecor papers.



Thanks Concerned Dad! I've now included the Greek study in the Website.

What shortcomings do you see with the Pro- Spinecor literature? Not only does it corroborate dr. Rivard's study but also the results I'm seeing in my own daughter. If anything, I'm trying to present a balanced unbiased picture of the Spinecor literature and I think I've accomplished that. I'll leave it to the reader to make his or her own decision.

GillyG
1st September 2009, 09:07 PM
Whatever anyone thinks for and against the Spinecor brace, there's just no disputing what a wonderful job it has done on Sealy's daughter so far. I sincerely hope her spine remains stable throughout her growth spurts, but even if she does finally end up on the surgeon's table, Sealy can honestly say she has done the best for her daughter. Plus the beauty of the Spinecor vs rigid plastic bracing is that her muscle strength should not have been comprised and will hopefully have allowed her spine to remain flexible. All of which should help the surgeon get a better correction if surgery does become necessary in the future.

What I really wish is that people could discuss the different issues surrounding bracing without becoming so personal.

Lucy7
1st September 2009, 09:36 PM
I totally agree 100% with Gilly's last post.

I also want to say that those children in the photo are beautiful. Sealy, I wish my parents had done one twentieth of the research you have done to help your little one. I wish they had not listened to the pillock at Great Ormond Street (I think it was there anyway) that told them to take away my brace and just watch and see. I try not to be bitter but when I look at your posts and see how much you are constantly researching it makes me sigh. I hope when your lovely daughter grows up she realises what a lucky lady she is!

Christine2
1st September 2009, 09:51 PM
Hi all

We are back from a wonderfull vaca in D.C. My kids will remember it always!! My daughter saw the Orthotist at one of our Orthopedic docs yesterday. She is very impressed with the Spinecor and has started to use it. We see her so she can follow my daughters case.

The orthodist was fasinated with my daughters progress. She checked for rotation out of brace and it was
between 2-3.
Awesome!!

We will get an out of brace x ray when we see Dr Rivard in October. Fingers Crossed. That will be a nerve racking time!!

Sealy
1st September 2009, 11:44 PM
Whatever anyone thinks for and against the Spinecor brace, there's just no disputing what a wonderful job it has done on Sealy's daughter so far. I sincerely hope her spine remains stable throughout her growth spurts, but even if she does finally end up on the surgeon's table, Sealy can honestly say she has done the best for her daughter. Plus the beauty of the Spinecor vs rigid plastic bracing is that her muscle strength should not have been comprised and will hopefully have allowed her spine to remain flexible. All of which should help the surgeon get a better correction if surgery does become necessary in the future.

What I really wish is that people could discuss the different issues surrounding bracing without becoming so personal.

I absolutely agree Gilly! If she does need surgery eventually, well....at least I've done everything I could do. I haven't ruled out casting her for the duration of her adolescent growth spurt :D

Sealy
1st September 2009, 11:47 PM
I totally agree 100% with Gilly's last post.

I also want to say that those children in the photo are beautiful. Sealy, I wish my parents had done one twentieth of the research you have done to help your little one.

Thanks Lucy :squeeze:

Sealy
1st September 2009, 11:49 PM
The orthodist was fasinated with my daughters progress. She checked for rotation out of brace and it was
between 2-3.
Awesome!!

We will get an out of brace x ray when we see Dr Rivard in October. Fingers Crossed. That will be a nerve racking time!!

Wonderful news Christine!!! How long will your daughter be brace free before the upcoming x-ray? Is it a week?

Christine2
1st September 2009, 11:54 PM
we were planning on 2-3 days.

Sealy
13th September 2009, 09:28 PM
I happened to come across the following study underway in Ireland. I don't believe the full study will be published until 2011:

Journal of Bone and Joint Surgery - British Volume, Vol 90-B, Issue SUPP_III, 477.
Copyright © 2008 by British Editorial Society of Bone and Joint Surgery

British Scoliosis Society


Dublin, Ireland: 28, 29 September 2006
President: Mr Chris Weatherley, MD, FRCS(Ed), FRSC(Ed)Orth.

A RETROSPECTIVE ANALYSIS OF THE SPINECOR BRACE TREATMENT AT THE SHEFFIELD CHILDREN’S HOSPITAL (S.C.H.), UNITED KINGDOM.
K. Hassan
Sheffield Children’s Hopspital, Sheffield. UK.

Introduction. The aim of this study was to retrospectively evaluate the efficacy of the SpineCor bracing treatment in all forms of scoliosis, between 2000–2006.

Methods. Over the past 6 years 56 skeletally immature and 1 skeletally mature patients with progressive scoliosis have been treated with the Spine-Cor bracing system. They were divided into the following groups; infantile 3; juvenile 19; adolescent 29; adult 1; "other" 5.
Results. 20 were deemed to have achieved a correc-tion, 24 stabilised 3 worsened and the progression of 4 patients was not recorded. To date 11 patients have gone on to surgery.

Discussion. Various bracing systems utilised in the past have shown what appeared to be a lasting degree of protection for scoliosis but subsequent long term follow ups have demonstrated progression of curves. The newer SpineCor system may offer a good short term outcome.

Conclusion. Early diagnosis and rapid treatment at a young skeletal age may offer an alternative to surgery with this relatively new bracing system. A further prospective study continues at S.C.H. and will be ready to present in 2011. Far longer term follow up will be required to validate apparent successes in the short term.

Correspondence should be addressed to: Dr Caroline Goldberg, The Research Centre, Our Lady’s Children’s Hospital Crumlin, Dublin 12, Ireland.

tonibunny
13th September 2009, 09:36 PM
That sounds very encouraging Sealy, it's good to see that proper studies are being made. 20 kids having achieved a correction with a brace is really brilliant news! Fingers crossed that the correction can be maintained :)

Pancake
14th September 2009, 12:41 AM
Here are some questions/concerns that I think will be relevant to the final conclusions of this retrospective study...


Introduction. The aim of this study was to retrospectively evaluate the efficacy of the SpineCor bracing treatment in all forms of scoliosis, between 2000–2006When they said "all forms" I thought they meant congenital, idiopathic, neuromuscular, connective-tissue-associated, etc.. Reading on, what they seem to mean is all STAGES of idiopathic and maybe all types of non-idiopathic lumped under "other."


Methods. Over the past 6 years 56 skeletally immature and 1 skeletally mature patients with progressive scoliosis have been treated with the Spine-Cor bracing system. They were divided into the following groups; infantile 3; juvenile 19; adolescent 29; adult 1; "other" 5. Data (pre)selection concerns (very important in retrospective studies):
1. 56 patients out of how many treated?
2. Why only 56 (unless that is the total number treated in that time peroiod)?
3. Why these particular 56?

Methodological concerns:
1. How did they determine that the curves were "progressive" during the study?
2. Was the study group compared to a "virtual" group of controls (natural history)? If not you can't say the brace did a thing.


Results. 20 were deemed to have achieved a correction, 24 stabilised 3 worsened and the progression of 4 patients was not recorded. To date 11 patients have gone on to surgery. 1. How long after bracing (or weaning) were these determinations of "correction" and "stabilized" made?
2. Are they claiming folks who were "corrected" will hold that correction thorough life and folks that were "stabilized" will stay stable for life?
3. What were ALL the angles of the patients who were "corrected?"
4. What were ALL the angles of the patients who were "stabilized?"
5. These preliminary findings don't appear to differ all that much from watching and waiting, depending on the angles in each group.
6. Was there the same distribution of T, L and S curves in each outcome group? T curves tend to progress more than L curves for example.
7. Why weren't 4 patients recorded? I believe it is the norm to count those as worst case (i.e., surgical) when they are lost to the study.
8. Are they using the standard +/- 5* precision to decide about "correction," "stabilization," and "worsening?"

As a first cut, it seems that 18/56 (~32%) continued to progress, some to surgery territory. That might be what you expect for the percentages of IIS, JIS, AIS, and "other" scoliosis in the study subjects and given their curve magnitudes. They have to show this expectation was changed due to bracing. I wish them luck doing that without a control group.


Discussion. Various bracing systems utilised in the past have shown what appeared to be a lasting degree of protection for scoliosis but subsequent long term follow ups have demonstrated progression of curves. The newer SpineCor system may offer a good short term outcome.
Short term is right. The $64,000 question is what is the long term. At best they have a retrospective of at most about 8 years post brace and less than 8 years post-weaning. And that's just for the patients who were braced starting in 2000. Some patients in the study started bracing in 2006. That will be at most a year or two out of bracing/weaning.

The Spinecor literature written by the inventors is widely discounted. Hopefully this is an independent study like the Wong and Weiss studies which will hopefully be well-designed and beyond reproach.


Conclusion. Early diagnosis and rapid treatment at a young skeletal age may offer an alternative to surgery with this relatively new bracing system. A further prospective study continues at S.C.H. and will be ready to present in 2011. Far longer term follow up will be required to validate apparent successes in the short term. They got that right.

And if they work with smaller curves that tend not to progress and even spontaneously correct, sometimes completely, they better be comparing against a control group. There is enough nonsense in the literature on this point.

As a last point, I think they need to start rigorously identifying or at least tentatively identifying patients with connective tissue disorders as I think this group has a much higher surgical rate compared to AIS at least and that no brace is likely to hold the curve. Not controlling for this seems like it is artificially skewing the bracing results to be less positive than they might otherwise be, just like not controlling for hours of wear.

Pancake
14th September 2009, 02:46 AM
Journal of Bone and Joint Surgery - British Volume, Vol 90-B, Issue SUPP_III, 477.
Copyright © 2008 by British Editorial Society of Bone and Joint SurgeryThis appears to be the wrong citation. This citation is for a presentation (or something other than a peer-reviewed article) on VATS, not Spinecor...

http://proceedings.jbjs.org.uk/cgi/content/abstract/90-B/SUPP_III/477-b

ETA: I see many items have the same citation.

The link to the Spinecor article is:

http://proceedings.jbjs.org.uk/cgi/content/abstract/90-B/SUPP_III/477-c

Sealy
14th September 2009, 03:25 AM
Maybe you should contact Dr. Caroline Goldberb and express your concerns and doubts regarding her medical study, after all you're the expert, right?! :D Maybe the article won't make it past peer review or make the cut in The Journal of Bone and Joint Surgery!

Correspondence should be addressed to: Dr Caroline Goldberg, The Research Centre, Our Lady’s Children’s Hospital Crumlin, Dublin 12, Ireland

Pancake
14th September 2009, 04:46 AM
Maybe you should get a basic education in the scientific method and try to begin to understand why most published research results are false.

Untrained lay folks commenting on scientific matters are bound to miss many important aspects.

You don't actually understand any of those comments I made, do you?

I realize you are doing your best but it is obvious that you don't understand the issues when you don't engage them.

You have never engaged any actual issues as far as I can tell.

What you can do is immaturely call me names on your yahoo group. Very "adult" of you. :nono:

Sealy
14th September 2009, 04:51 AM
Untrained lay folks commenting on scientific matters are bound to miss many important aspects.

I wholeheartedly agree! While you're busy deciphering the the tea leaves and giving us your lay interpretations, maybe you should include in your e-mail to Dr. Goldberg that her study is false!

Pancake
14th September 2009, 04:53 AM
You mock what you don't understand. Also very "adult" of you.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182327

Why Most Published Research Findings Are False
John P. A. Ioannidis

Summary

There is increasing concern that most current published research findings are false. The probability that a research claim is true may depend on study power and bias, the number of other studies on the same question, and, importantly, the ratio of true to no relationships among the relationships probed in each scientific field. In this framework, a research finding is less likely to be true when the studies conducted in a field are smaller; when effect sizes are smaller; when there is a greater number and lesser preselection of tested relationships; where there is greater flexibility in designs, definitions, outcomes, and analytical modes; when there is greater financial and other interest and prejudice; and when more teams are involved in a scientific field in chase of statistical significance. Simulations show that for most study designs and settings, it is more likely for a research claim to be false than true. Moreover, for many current scientific fields, claimed research findings may often be simply accurate measures of the prevailing bias. In this essay, I discuss the implications of these problems for the conduct and interpretation of research.

Sealy
14th September 2009, 04:54 AM
John P. A. Ioannidis is in the Department of Hygiene and Epidemiology!?????! :D

Pancake
14th September 2009, 04:55 AM
I wholeheartedly agree! While you're busy deciphering the the tea leaves and giving us your lay interpretations, maybe you should include in your e-mail to Dr. Goldberg that her study is false!

I have no medical training but I am a research scientist who understands WHY controls are needed and other very basic aspects of doing science. Do you? It is not obvious from any of your posts that you have even the most basic understanding.

Pancake
14th September 2009, 04:56 AM
John P. A. Ioannidis is in the Department of Hygiene and Epidemiology!?????! :D

Ignorance on the wing. You are burying yourself.

Pancake
14th September 2009, 05:07 AM
If you think my comments about that study are wrong, why don't you point out which ones are wrong and why?

I won't hold my breath.

I'm not perfect. I could be wrong.

You seem to think I'm wrong but can't string any words together into a cogent argument to show that. Its one Emily Litella moment after another and one non-sequitor after the next.

Small minds attack people. Big minds engage ideas. You have a near-perfect record of focusing on me as opposed to putting up anything logical in opposition to what I write.

Do you even realize that?

Sealy
14th September 2009, 05:09 AM
As for name calling --- I may have accidently typed Kooka instead of Pooka (your user name on the NSF) -- but that was an innocent mistake and I did correct the error.

Pancake
14th September 2009, 05:10 AM
As for name calling --- I may have accidently typed Kooka instead of Pooka (your user name on the NSF) -- but that was an innocent mistake and I did correct the error.

Bullsh*t.

Pancake
14th September 2009, 05:14 AM
All you have to do is stop commenting on anything you clearly don't understand.

You'll be fine.

I don't understand plenty. You don't understand plenty.

It's okay to say, "I don't know." That is far preferably than lobbing ad homs back over the net in response to factual statements or comments on the literature that you don't understand.

Sealy
14th September 2009, 05:58 AM
You harp on the need for controls in medical studies which involve human lives - children. Yet, where do you think orthopaedic doctors got the following Progression Risk Chart? Is it really necessary to repeat things over and over again? If bracing works, then it should be beat the percentages. I think that's obvious. Curves at skeletal maturity under 30 degrees generally will not progress into adulthood - 10% risk according to the chart.



http://www.scoliosis-australia.org/images/doc_table.gif

mark
14th September 2009, 10:22 AM
Ahhh, girls, girls, girls (not meant in a patronising way), the other two threads have had to be locked lets try and keep this one open :D

I think we need a bit more :hug: and a lot less :argue:

Constructive debate is fine but lets keep the personal stuff out

titch
14th September 2009, 10:28 AM
That is quite enough. Really and seriously, I have had enough of this.

I'm placing you both on moderation for a week, so no posts that you make will become visible until one of the staff has had time to read them and extract actual discussion and information from the personal argument.

If this is launched into yet again in future, I'm really not sure where we'll go from there. I don't want to lose either of you as you are valuable contributors if you can only put aside this needless fight, but I cannot deal with this continual problem.

If you still find yourselves unable to be civil, then I guess (considering that having users on moderation adds a massive burden to us as staff, and becomes increasingly less workable as more people are placed on moderation), I'll have to see if there is any way of placing the particular forum on moderation - with apologies to all the other users of it - as at least if it is just an entire forum which requires checking, it is easier for us to deal with. As it stands, I really see no other alternative though.

If either of you (or indeed anyone!) have any *useful* suggestions, then I'll be glad to hear them as I'm not a fan of punitive action, but see no other choice, and I'm fed up with locking threads only to have this start again on a new one. I'd also like to draw your attention to the fact that you are quite likely putting people off from contributing, and even from signing up at all, because of this ceaseless bickering.

Your accounts will be unmoderated again in a week.

Sealy
14th September 2009, 01:37 PM
I posted a link to an abstract published in the Journal of Bone and Joint Surgery by an orthopaedic surgeon. Pancake responded by throwing doubts on this study because there are no unbraced controls, and that the study is invalid without them. We disagree on this; I myself am happy with the way that the study is being conducted, because I believe it would be unethical to keep a group of children unbraced.

GillyG
14th September 2009, 10:48 PM
Thank you for taking action Titch. This kind of ceaseless bickering is what put me off joining NSF in the first place and I would be distraught if SSO (even one forum) went the same way.

I'm sure there are plenty of members who feel unable to add to what *should* be a useful discussion, for fear of having their contribution pulled apart and ridiculed. In fact I think that is definitely the case, made obvious by the fact that no-one other than staff have posted on this subject for ages.

It's a very sad state of affairs :(

GillyG
15th September 2009, 10:45 AM
I just want people to be able to go back to discussing things in a supportive way, rather than risk being publicly ridiculed for having an opinion. The hint is in the site's title 'Scoliosis support'.

Lucy7
15th September 2009, 03:19 PM
I totally agree with you Gilly. In another thread I made a similar point so I wont go into it again. I just want to thank Titch for her swift action (maybe that should be "actions" because this has happened several times).

Thanks also to Mark for trying to calm the storm!

Thanks for trying to restore order on my favourite site!!!

burdle
15th September 2009, 06:54 PM
I always seem to be having trouble picking up the thread of the argument. i am not thick really but is the difference of opinion bewteen the brace that is offerd by Spinecor and other braces or between bracing and surgery?. Apologies to Pancake ( I must say her posts do read well) but I am assuming she is not in favour of Spinecor? but I seem to have missed the earlier points.

Pancake
15th September 2009, 07:06 PM
I always seem to be having trouble picking up the thread of the argument. i am not thick really but is the difference of opinion bewteen the brace that is offerd by Spinecor and other braces or between bracing and surgery?. Apologies to Pancake ( I must say her posts do read well) but I am assuming she is not in favour of Spinecor? but I seem to have missed the earlier points.

No apologies necessary. There is a high noise level in this and other threads.

And please don't be swayed by how my posts read!!! I hope you evaluate the ideas for yourself. :) I don't want to win any debates on rhetoric. ;)

I am not in favor of using innocent kids over and over and over in studies that we know ahead of time will not yield robust results and for which we know many if not most will be treated needlessly or ineffectively. I question the ethics of that.

burdle
16th September 2009, 10:36 AM
can you give me a link to the abstract/studies you are referring to. I would not be swayed by rhetoric but I can recognize a well reason objective argument.

tonibunny
16th September 2009, 11:26 AM
Hi Burdle, please take a look in the "Critical Debate About Bracing" thread, Pancake can post the study there. I'm trying to keep this thread purely for Spinecor support, for people who are actually using the brace :) Thanks!

crazylu
5th October 2009, 06:46 PM
Hi everybody, I'm new here. I see that a heated debate as to whether Spinecor is the face of evil or the face of good. Whatever the case, we have decided that for our daughter the Spinecor brace is the way to go. A little history, my daughter just turned 13. In August (2009), I noticed that her bathing suits etc. were not fitting right. I can't remember why but scoliosis popped into my head. After googling it and finding out about the bending at the waist thing, I checked her out. I couldn't believe my eyes. She had a definite hump on one side of her back. I quickly took her in to the family doctor who confirmed my suspicions and sent us for x-rays. He also gave us a referral to Sick Kids hosp. in Toronto. After several weeks of waiting we were informed that we could see the specialist 3 days before Christmas. After much research and finding out that our daughter's curve was at 46 degree, we decided that we could wait no longer. I finally managed to get hold of Dr. Rivard in Montreal at Ste. Justine's Hospital. An appointment was set up for my daughter in his clinic. They did x-rays and then we spoke to Dr. Rivard. According to his measures out daughter had a curve of 44 degrees. He gave us all the stats about what type of outcomes we could expect. He never claimed that a miracle could happen and that our daughter would have a straight spine. He discussed surgery and at what point we would have to consider it, if that became needed. I liked his straightforward approach, and the fact that he spoke directly to my daughter as well as to my husband and myself. We are headed back to Montreal on October 15 to get her brace fitted. Any helpful hints or advice would be appreciated. Thanks Lu

tonibunny
5th October 2009, 06:52 PM
Hi Lu, welcome to SSO :welcome2:

I'm sorry to hear that your daughter has scoliosis but I'm glad you've found us. We (the staff) will ensure that this thread is kept as a supportive as possible for those of us who have chosen to try the Spinecor, so don't worry :)

Welcome again,

Toni xx

crazylu
6th October 2009, 04:16 PM
Thanks for the welcome Toni. My questions at the present time are related to the actual visit to get the brace. Does anyone know if they provide a bodysuit? Will we be able to purchase extras? We are going to Ste. Justine's in Montreal with Dr. Rivard. I am just wanting this information to be prepared as much as we can in advance of our visit. Thanks Lu

concerned dad
6th October 2009, 04:57 PM
Yes, you get one body suit with the brace. Most folks advise buying more and they sell them there. I dont recall exactly how much. In the neighborhood of $75 or so.

Our second trip we flew out of Toronto direct to Montreal and rented a car for the day. That worked out well.

If I were you, I would ask about the blood test his colleague at St Justine's is developing that assesses risk of progression of scoliosis and (somehow) assesses just how effective bracing may be for that specific individual. Dingo has discussed this on the other forum in the research thread.

Parking at the hospital is a bit tough. Plan on some extra time.

Dr. Rivard will likely meet you in the lobby and walk you through the process. Not sure if he does this for everyone but since we were ignorant US citizens we had no idea how the canadian health system worked. It was somewhat intimidating being in a strange city not knowing the language and Dr. Rivard was certainly helpful in assisting us with the paperwork.

Take a digital camera so you can photograph exactly how the brace is supposed to be placed on your daughter. They will not let you leave without being sure you have it correct, but a picture may help you when you get home.

The snaps are very very tough at first but assure your daughter that they get easier very quickly with use.

Finally, I would be sure to get digital copies of your daughters xrays. Dr. Rivard will write you a script if you ask and you can pick them up on the first floor right next to the office where you pay.

crazylu
6th October 2009, 05:53 PM
Thanks for your response, concerned dad. We had our first trip a week ago to see Dr. Rivard. We flew from Toronto (we live in the area) and we are going to fly again, I think. Dr. Rivard seemed very nice and also explained the blood test that you were mentioning. Even being a Canadian is of very little help if your French stinks (mine does!) We had planned on taking a digital camera with us to take photos as you suggested. We have our xrays from the hospital we went to here at home. They are virtually identical to the ones Dr. Rivard had done. His measurement was 44 degrees, the one from our hospital was 46 degrees. I hear what you are saying though. How thick are the bodysuits? Is there more than one colour? Sorry about so many questions but as you know every point raises another one. One more question, does the brace make the detector go off at the airport? Thanks Lu

concerned dad
6th October 2009, 09:57 PM
The body suits are very thin. Like a cotton t-shirt.
There is a neat logo on them.
They only com ein one color (white) as far as I know. But there are two styles. Christine or Sealy here should be able to give you much more useful info as they've been using the Spinecor for a while.

Regarding the detectors at the airport, I would think that depends on what the sensitivity is set at. My daughter didnt want to risk being pulled aside and didnt wear it on the plane but changed in the restroom at the airport. Considering how difficult the snaps are when they are brand new, you might consider letting her fly home without wearing it. If she runs into trouble in the restroom on the plane you may have a challenge.

Regarding the xrays. It is the inbrace xrays that I would think you would be most interested in seeing. I hope she achieves a signficant inbrace correction and I hope it is reported correctly.

crazylu
6th October 2009, 11:32 PM
Thanks again for the quick response, concerned Dad. I appreciate your information. I too hope she achieves a good inbrace correction. I understand what you are saying about the inbrace xray as I have read the whole thread. Just wondering what made you question the correction your daughter was getting. I'm just curious, not trying to stir up anything. As you can imagine my mind is going about 100 miles an hour with questions. Anything from 'Why my child?' to 'Am I doing the right thing? Sadly there is no correct answer. Lu

concerned dad
7th October 2009, 04:36 PM
Well, you got me thinking and I went back to review the timeline and some of my old posts on the other forum (scoliosis.org).
I was discussing Cobb Angle measurements with Sharon (Pooka/Pancake) and Pnuttro on a thread I started there: “An interesting aspect of the Spinecor” where I noted that Dr. Rivard reports that his data show a continued decrease in Cobb angle AFTER bracing ceases. We started talking about sources of measurement error and that discussion prompted me to open my daughters xrays that I received at our second visit.
Earlier in this thread I mentioned that my daughter only wore the brace for 6 weeks. In retrospect, it was almost 3 months.
Our situation was somewhat unique in that my daughters skeletal maturity was more advanced than her Risser sign indicated. We decided to cease bracing (basically watch and wait) and after 6 months we went for another xray and her Cobb angle had not progressed over that period. Had she been braced during that time we would naturally have attributed the stabilization to the brace. My daughter attributed the stabilization to the prayer we said at St Joseph’s Oratory (http://www.scoliosis.org/forum/showpost.php?p=70267&postcount=3522)(the Basilica just east of St Justine’s Hospital).
Your daughter is in a different situation. She is a year younger than my daughter and her curve is more advanced (we were at 38, and now, almost a year later, she is at 36 degrees). There is no question in my mind that the SpineCor has helped some kids, particularly young kids like Christine’s daughter. They seem to be on to something. You obviously know you are facing a challenge with such an advanced curve and you need to keep a very positive attitude for your daughter, especially as she deals with the issues of wearing a brace as a young teenager.
You know that something like 20 – 25% of braced kids go on to require surgery. Many things go into this number, not the least of which is the skill of the brace fitter and the effectiveness of the brace. You are going to the experts in Montreal and that bodes well for your girl.
It would be great if there was someway to determine if bracing is going to be effective for an individual. Dr Moreau there at St Justine’s has developed a test that measures osteopontin, he claims that his test predicts scoliosis progression. Since he is right there at St Justines I would suggest you look into this more. Another genetic test was developed by Axial Biotech that claims to predict brace resistant scoliosis. These tests are discussed briefly in this thread (http://www.scoliosis.org/forum/showthread.php?t=9435)at NSF.
I wish all the best for you and your daughter. Don’t hesitate to ask me and the folks here any questions and please share your knowledge and experience with others as your journey continues. Remember though that none of us are doctors or otherwise qualified to give medical advice. We are sharing our opinions and these should be taken with a grain of salt.

crazylu
7th October 2009, 06:15 PM
I thank you again, concerned Dad for your insights. The way we are thinking right now is that we feel we are doing the right thing for our daughter. We are well aware of the fact that her angle is fairly advanced. I still find it hard to believe that 2 months ago our biggest concern was which outfit looked cuter for back to school! One of the main reasons that we went to Montreal is that our referral to an orthopedic specialist is not until Dec 22, and that is considered urgent in Ontario. We have still kept our appointment in Ontario, because if you cancel, then the wait is over 6 months. We have gone back and forth, weighed the pros and cons, and at this time we feel that this is our best option. Sadly it seems that no matter what you do, most roads end up in surgery. You would think with the sheer number of cases of scoliosis that they would have come up with a more satisfactory way of treating it. Sorry for the rant. Lu

concerned dad
7th October 2009, 08:06 PM
Well, I hope I didn’t give you the impression that I felt surgery was a forgone conclusion. It is not. I mean, if you thought it were, I would think that you would spare your daughter the burden of bracing. In my opinion, you’re doing the right thing here: giving bracing a shot. You’ll know soon enough more information that may cause you to rethink things or to reinforce your decision:

You’ll know the extent of her inbrace correction
You’ll know (after your 4 week follow-up) the extent of any continuing progression (if it going to progress, I believe the thinking is that even an inbrace xray will show the progression)
You’ll know you daughters tolerance for wearing the brace. Some kids have an easy time of it, others, not so much. But, by most accounts, it is better tolerated than some of the hard braces.
You’ll meet with your local ortho guy in December and have a chance to have an independent expert review and assess her situation (obviously something I strongly advocate).
One thing you didn’t share is her menarchal status. If she is post menarche that would generally be a good thing: suggesting that her major growth spurt has already occurred.

Two other suggestions: you might encourage your daughter to participate at the childrens forum on Spinekids. I’ve heard lots of good things about the forum. She may find support there among kids her own age going through the same thing. Another thing, the spinecor testamonials on Youtube (although basically commercials) can be a source of encouragement for your daughter. I mean, she’ll see other kids just like her wearing the brace, talking about the brace, having success with the brace – these may be worthwhile for her to watch to relieve any anxiety she may have and to provide motivation for compliance.

Finally, and this may be a strange way of looking at things but, I believe that having faced the challenges of scoliosis has made my daughter a stronger and better person. You can also sense from many of the forum participants here, who themselves have scoliosis, a strong strength of character and compassion. Like them, your daughter will likely take away from this challenge a new strength and grow into a better person for having experienced the challenges she is going to face.

Christine2
7th October 2009, 11:08 PM
Hi Lu

Sorry I have not replied , busy,busy,busy:) As you can see in my signature my daughter has been in Spinecor for over 3 yrs. We have our 1st out of brace x ray this month. OMG I am nervous!!! I can not remember all of the ? you asked or which ones concerned dad answered so re ask if one was missed.
We were in Washington DC this summer and the brace did not set off 1 detector (high security)

Body suits. 2 styles the regular and 1 with shorts. My daughter did not like the short style. We have at least 4-5 suits on hand at a time, expensive but we have not found an alternative to the Spinecor suits yet. Trust me we have tried everything. Some of the suits we get are thin some are thicker (don't know why)

I have to go for now. I will check in and help you as much as I can. Feel free to PM me anytime.

crazylu
8th October 2009, 03:43 PM
Thanks again to everyone who responded to my questions. I'm sure I will have a million more. Lu

Christine2
8th October 2009, 09:33 PM
If you are interested in the progression test you may want to contact Dr Rivard. I believe he needs to set it up ahead of time.

crazylu
14th October 2009, 04:53 PM
Well it's off to see Dr. Rivard tomorrow. We are flying out of Toronto in the morning. I think other than being nervous about the whole thing, we just want to get on with it. My daughter is pretty upset, but is trying to be brave. I'm hoping that a little shopping on Friday will help take the sting out of this whole thing. Who am I kidding though, she is a trendy little thing who loves her skinny jeans and tees. I have to charge up the batteries in my camera so I can take pictures of the process. Wish us luck. Lu

Christine2
14th October 2009, 09:39 PM
Good LUCK LU!!

mark
14th October 2009, 11:25 PM
I really hope it all goes well, i wil be thinking of you tomorrow

GillyG
15th October 2009, 12:20 AM
Best of luck :fingersx:

tonibunny
16th October 2009, 12:03 AM
Good luck! :squeeze:

Christine2
16th October 2009, 01:21 AM
We are back from our appt. Out of brace X ray was 11* not bad but I was secretly hoping for another 1* reading. I was hoping she could come out of brace for a year. Gotta tell you all that this traveling 7 hours one way to Canada for appointments is getting old BUT I will buck up and do what I think is best for my daughter. I checked out airfare again. $700 – $800. per person, I could fly my whole family to California for that price!

My goal all along is to keep my daughters curve as low as possible now, so that we can stay below 20* during the growth spurt. Dr Rivard asked us what we wanted to do, My daughter was included in the whole discussion and it was unanimous, stay in brace till the end of growth.

mark
16th October 2009, 01:30 AM
Christine

Your a great mum and that is a great reduction and it seems the Drs inclusion of your daughter in the discussions and the treatment plan is a great idea, after all your daughter is the one wearing the brace

Once again your a fantastic, take some time out and have a large glass of wine, you deserve it

mark

tonibunny
16th October 2009, 01:33 AM
11 degrees is fantastic! Fingers crossed it holds there. Even if it creeps up a bit, with a very low measurement like that you have a little breathing space. Congrats - hopefully at the end of all this you will be happy that the long journeys were worth it :)

crazylu
16th October 2009, 08:26 PM
Christine, your daughter should be so happy with the 11 degrees. That is so fantastic. Sorry your journey is such a long one to see the good doctor. Our trip was interesting, stressful and tiring. My daughter got her brace on and was instructed how to put it on. Thank goodness we took the camera and took lots of pictures, otherwise we would have already been sunk. We have had a few tears (not just my daughter either) and some pain in the her one shoulder. I kept her home from school today as yesterday was very long and tiring. I figured we could see if she needed any new clothes, but she is not in the mood. Surprising from a girl who is a true fashionista. I guess it will take a few days of adjustment. Her in brace xray showed a reduction of 9 degrees on the top and 10 degrees on the bottom (sorry brain tired can't remember up from down today). Sorry I don't feel too positive today, I had hoped for better correction, buy even so it is better to do something than to sit and wait for an appointment in Ontario, which by the way they changed from Dec 22,2009 to now Jan 11, 2010. Why is it so difficult to get a specialist here? I do not know. Thanks again everyone for your positive vibes and information for yesterday. It really helps. Lu

Christine2
17th October 2009, 11:26 PM
Hi Lu
It is tiring!! You will have a re check in about 5 weeks, your daughter may get more reduction by then. My daughter adjusted pretty quickly although she was only 6 yrs old when she started bracing. I would imagine it will take a bit longer for an older fashion conscious girl. Try not to go insane on us :DWe are there for you!!

titch
18th October 2009, 12:10 AM
It might be worth pointing out to her that Lourdes, Madonna's daughter, has been photographed several times with her SpineCor brace showing :) Admittedly she has every reason to be confident (or at least make a good show of it) but the point is, she's still regarded as tremendously stylish and wears amazing stuff despite the brace.

Christine2
18th October 2009, 01:01 AM
Nice point Titch!!!

crazylu
18th October 2009, 03:24 PM
Thanks for the good thoughts everyone. Yes, she actually asked me to look at the picture of Lourdes again. I took that as a good sign. Her shoulder is still hurting, but considering that the brace has moved it a great deal, I guess that would be normal. Today we are going to a family function, so she is a little nervous. Tomorrow however is the big challenge 'school'. Grade 8 is tough even at the best of times. Wish I could go and protect her all day, but I know that is just wishful thinking. I'm hoping her friends rally round, and hopefully no one will even notice. She thinks it looks huge, but as we all know it really doesn't. Thanks again for the support. Lu

crazylu
20th October 2009, 03:17 PM
Good day all, just wanted to let you know that day 1 back to school was a raging success. My daughters classmates were all more curious than anything. They wanted to know if it hurt, if she could feel it etc. She even changed for phys ed class. I was so glad for her as I could feel how nervous she was as I dropped her off at school in the morning. Her big smile when I picked her up said everything. Of course she is still not happy about scoliosis, braces and all that goes with it but at least the tears have stopped for the moment. Hoorah!

tonibunny
20th October 2009, 03:43 PM
Oh that is wonderful news :) Well done to your daughter! I'm so pleased for her, it must be a massive relief for you too :squeeze:

GillyG
20th October 2009, 08:11 PM
What a fantastic relief that must be for you. I'm so glad your daughter is feeling a little more confident now, bless her :)

Christine2
20th October 2009, 09:24 PM
Awesome LU

I find my daughters friends very supportive for her. You know what is fun, doing kartwheels in the front yard with your daughter :D
Make sure you stretch 1st. I have almost hurt myself on a # of occasions.

crazylu
22nd October 2009, 02:47 PM
Christine, that would be a moment for funniest home video's, complete with laugh track and ambulance for me! Thanks Lu

crazylu
4th November 2009, 07:14 PM
Just to bring everyone up to date. My daughter is doing fine with wearing the brace. She is not being bothered by anyone at school, thank goodness. She has been doing her skating routines with the brace on, although she won't be able to wear it in competition as the figure skating dresses are quite short. She is only able to have about an hour in the morning with it off to shower etc., and get ready for school. She is able to have her two hour break in the evening, which she enjoys. She has managed to get her father or myself to give her a back rub every night before she puts it back on. I am so proud of how she has been about the brace. In other news, we go back to see Dr. Rivard on Nov. 23, which makes me very nervous. Now I understand what everyone else feels before the appointments. The even more interesting news is that they have moved my daughter's appointment at Sick Kids in Toronto up to Nov. 24, the day after we go to Montreal. We are still going to go to the appointment in Toronto, as we want to hear what they have to say. My daughter thinks that they are going to want to rush her into surgery, because of her 46 degree angle. It should be interesting to see what they have to offer. I hope we get some kind of indication from Dr. Rivard as to whether he thinks that we are getting any kind of improvement from the Spinecor brace. I worry though because when they were putting on the brace he said that Dr. Coillard(sp) felt my daughter's curves were rigid. I guess that is what the doctor thinks when the curves are fairly large. I wish this whole thing was more straightforward. Thanks for listening, Lu

Lucy7
4th November 2009, 07:35 PM
Lu I am so glad your daughter is doing okay with the brace and am so grateful nobody is bothering her at school.

Best of luck for your app and trip. Please continue to keep us in the loop.

Hugs,
Lucy

Lucy7
4th November 2009, 07:47 PM
We are back from our appt. Out of brace X ray was 11* not bad but I was secretly hoping for another 1* reading. I was hoping she could come out of brace for a year. Gotta tell you all that this traveling 7 hours one way to Canada for appointments is getting old BUT I will buck up and do what I think is best for my daughter. I checked out airfare again. $700 – $800. per person, I could fly my whole family to California for that price!

My goal all along is to keep my daughters curve as low as possible now, so that we can stay below 20* during the growth spurt. Dr Rivard asked us what we wanted to do, My daughter was included in the whole discussion and it was unanimous, stay in brace till the end of growth.


Hi Christine,

So sorry to belate with my reply. I just wanted to say that I hope your daughter's curve stays as low as poss and that I think its great that she was involved in the decision process. I agree with an earlier post - you are an amazing mum!

I hope there are some chaep deals with Air Canada soon so that you can fly up. I managed to get a great deal from DC to Ottawa early fall and it was so cheap that it was lower than a train to NY! But on their website the price was $849. Eventually I called them a week before I wanted to leave and the ticket price had dropped dramatically. I think they suddenly drop the prices if they cannot fill up a plane. Anyway, it really is worth pestering them.

Hugs,
Lucy

Christine2
5th November 2009, 04:53 PM
Lu

Dr Rivard will do another x ray at your appt. You will have a much better idea of how the brace is working. They are very honest about prognosis so just ask him his opinion. Be sure to get a disk with your daughters x rays so you can show the docs in Toronto. I always worry about x ray exposure, I love the fact that St Justines has the Q scan!
I am VERY glad your daughter has adapted so well.

Christine2
5th November 2009, 04:54 PM
Lucy
Thanks for the kind words. I will pester the airlines:D

crazylu
6th November 2009, 12:39 AM
Thanks for your kind words Lucy and Christine. I am hoping for some more (even a teeny weeny bit) of improvement, it would do wonders for everyone's spirits. I think that I am more nervous about the Sick Kids appointment, cause I just know that they are going to be pushing surgery. Her angle on her xray in Ontario measured out at 46 degrees on the top and I can't even remember the bottom one, the top one threw me for such a loop. Christine I hope you can get a better deal than we have with Air Canada. Even with booking 6 weeks in advance we are still paying just shy of a thousand dollars for the three of us. The first time we flew it was 1300 dollars from Toronto to Montreal and we were in the air for 51 minutes. Ah well, I didn't really want to go on an exotic vacation anyways!!! We would drive but I have bursitis in my hip joint which would make the trip very painful. My daughter has enjoyed all the flying as she had never been in a plane before. I'm just sorry it had to be for this reason. Lu

concerned dad
6th November 2009, 04:04 AM
Be sure to get a disk with your daughters x rays so you can show the docs in Toronto.

I second that suggestion!

Best of luck.

crazylu
6th November 2009, 02:49 PM
Thanks everyone, getting the xray copies is on the top of my list. I have to write everything down or it's forgotten. I appreciate all your advice. Lu

crazylu
19th November 2009, 04:26 PM
Meltdown! Last night we had all kinds of tears regarding 'the brace'. My daughter was in tears about being different, how come no-one else has to do this (at her school), it doesn't feel good, her 'real' clothes look terrible on her, etc. I asked her if anyone was bothering her at school, she said no. She said it was because she and one of her girlfriends were looking at pictures from last school year and it made her sad that she can't look that way anymore. I told her that she really doesn't look all that different and that she was still wearing most of her usual clothes. She had so many of the 'why' type questions, none of which I had answers to. She said sometimes she wishes that she could just have surgery to make it all better. (If only it were like that.) It was a very rough night. I try to stay positive but it really is upsetting. I hope we have some improvement on Monday when we go to Montreal. At least we will have a better idea of what is happening for when we go to Sick Kids on Tuesday. What a week this next one is going to be for our family. Sorry to be so down, but what can I say? Lu

GillyG
19th November 2009, 04:57 PM
Awww :hug:

It must be so hard to be on the receiving end of your daughter's frustrations and there not to be a thing you can do about it, I really feel for you :(

For what it's worth, I think you doing an amazing job of trying to keep her spirits up. At times like these, I usually resort to some kind of bribery (sometimes disguised and other times quite blatant :p), so perhaps the promise of a monthly treat of some kind to celebrate one month nearer to the day she doesn't need to wear it any more would help? It doesn't have to be anything expensive, just something you know your daughter loves or likes to do. When our boys were young, we used to promise to play board games in the winter (in fact, we still do - except now it's things like Risk or D&D which go on for hours :p) and go to the park or swimming, biking etc in summer. Just a thought ... :)

crazylu
19th November 2009, 06:44 PM
Not a bad idea Gilly, although at 13 the bribes can be pretty expensive, this young lady likes the finer things in life. She does love the Monopoly tournaments with Mum and Dad. Perhaps I will try this approach. Good thinking. Lu

crazylu
24th November 2009, 02:28 PM
Just an update, we saw the doctor's in Montreal yesterday. Dr. C did a small adjustment to the brace then sent us upstairs for a new xray. We then saw Dr. Rivard who advised us that her curves remained unchanged from the previous visit. She has 38 degrees on the top and 28 degrees on the lower curve. He said in passing that the 30 degree range would be okay?? I don't know if he meant that was what we could hope for or what he was meaning by that. I guess we expected better, but at least we didn't get worse results. I am concerned because she has not grown yet, still just over 5 feet tall. Can you comfortably live as an adult with curves this size? Again I don't know. Today we are going to Sick Kids in Toronto, much less travel, only about an hour by car. I am so nervous, don't know if they are going to be annoyed by our taking her to Montreal. I do know that if they say anything that I will tell them that we were not willing to wait 6 months to see a doctor, and that is what they expected there. We have her xrays from Ontario and from Montreal. I have no idea what will happen today, I fear that they will want to do surgery on her spine, her angles without the brace are pretty bad. Sorry to go on and on, but at least all of you know where my head is at, having been in this spot yourselves. Will post about our Sick Kids appointment later. Lu

mexmom
26th November 2009, 02:01 AM
Hi to all,
I'm new to all this, the forum, and :( the new change in our lives.
My daughter (13 in a week), has been diagnosed with AIS, it has been a very hard time for her father and I, I have felt so helpless, so angry with me for not noticing it before, and so disappointed to find out there is not a "proven" treatment for her condition.
I been reasearching a little, so, that's how I got here.
Her Dr. says to go into a TSLO, she's got 25 on both curves, although the first Dr that saw her said she had 10.

I was explained why the difference in the measure, and I understand about it, and I go with the 25, that is correct :(
He sent my daughter also to the physiotherapist, she goign 3 times a week, and she started swimming, because both of the doctors agree she needs to strenghten her back muscles.

I've been reading about CLEAR institute, and I must tell you, that the first time I found out about it, I was so happy, that I was ready to pack and travel to US, (we are from Chihuahua, Mexico), and spend all of my saving in her treatment, then, I read here that it was not as good as it sounded, so I stopped a little, and I'm trying to do more research on it.
I also see the Schroth method as a good one, but it seem a more difficult to approach, give the place we live and the lack of money to go thru the entire process, including the travel to Canada or a place near it.
So any advice you can give me, as if is worth it, or there is an organization that will help us out, I really will appreciate it.
Also, I wish someone could tell me, that her/his experience with a similar condition had gone good.
I do understand by now, that there is nothing in writting, and even with 2 identical conditions, different person will develop very different, it seem that they haven't found out what makes them worst, what doesn't.
Our Orthopedist Doctor has told us, that he has no intention, nor can correct the curves, but, his intention is only to stop the increase.
I still need to do some more X rays on her, to see the matuirity of her skeleton, now I'm praying she's got enough growt !!
Thanks to all for the threads that have been post, they really help a lot, mostly to people like me, that are new on this.
God bless all of you, and keep the courage and strenght:)

crazylu
26th November 2009, 04:17 AM
Hi Mexmom and a big welcome to you. The helplessness that you feel is normal. We all feel it on a daily basis. Our daughter is 13 and wearing a Spinecor brace. Without the brace her top angle is 46+ degrees and the bottom is 36 degrees ( I believe). With the brace on she has a top angle of 38 degrees and bottom of 28 degrees. Trust me we are all just as confused as you are. We all want what is best for our children, who are usually as upset as we are. We discovered our daughter's scoliosis in August, and I swear it has become a full time job researching what to do. I don't think there is a definitive answer. Just keep on researching and asking questions. We can all help you by using our experiences to answer your questions. Lu

mexmom
26th November 2009, 05:21 PM
Thanks Lu, for the comforting words . . . .:)

tonibunny
26th November 2009, 05:34 PM
Hi Mexmom, welcome to SSO :welcome2:

mamamax
26th November 2009, 05:45 PM
Hi - I'm new to SSO but post often over at NSF. I'm an Adult bracing with Spinecor. Just wanted to introduce myself - hope this is the right place to do that. A super forum here and I hope to be able to stop by more often :-)

SCP
3rd December 2009, 06:05 PM
When in doubt, it's always a good idea to ask your doctor for the x-rays and have them re-analyzed again by another specialist.

I saw an x-ray that measured 39 degree cobb angle (generated with a computer) that just did not look right. The patient was advised to wear a brace by her orthopedist. I re-analyzed the x-rays using the same vertebrae. Bingo! I knocked 9 degrees off without doing a thing. This patient's uncle was an orthopedist and he advised her not to wear the brace. What does that tell you?

To be honest, I'm not a huge fan of "cobb" angles. I know that is the standard to measuring scoliosis, but I've seen people with larger cobb angles with less noticeable curves than patients with smaller curves.

I reserve my judgment on spinecor because it's still relatively new and there needs to be more independent testing. Most research papers seem to show that spinecor is ineffective, but there is too much room for human error with the application and re-fitting of the spinecor brace that could affect the results.

As for MexMom, I wish you a lot of luck. Remember that educating yourself is to empower yourself. There is a lot of confusion out there regarding scoliosis. Not surprising since there is no agreement within the medical community and those we call specialists.

Best of luck and please keep us informed on your journey!

tonibunny
3rd December 2009, 06:33 PM
Hello Scoliosisdoc,

Could you let us know your medical background please - are you a medically qualified doctor (an MD in the US), or a chiropractor? (Here in the UK, chiropractors are not allowed to call themselves doctors unless they explicitly state that they are doctors of chiropractic). It would be good to know what sort of doctor you are, where you trained, etc.

Of course, we all know that Cobb angles are the starting point for measuring scoliosis, rather than being the be-all and end-all, and that orthopaedic specialists take other factors such as rotation into consideration :)

titch
3rd December 2009, 08:01 PM
I'm always happy for people to share their advice and the benefit of their experience and training :) I just want to be absolutely clear for our members that we do not have any "resident" doctors who speak for SSo, and any canvassing is unacceptable. I'm *not* saying that is what is happening here, just issuing a timely reminder ;)

I think a valid point has been raised in saying that however skilled a surgeon is, they are still a surgeon. There have been too many of us who have had little to no assistance because of curvatures being sub-surgical in size, and many people benefit, whatever the size of their curvature, from physio (whether that is standard physio, or a more targetted approach such as Schroth) and hands on approaches (whether that is massage therapy or something more manipulative such as osteopathy). I'm very much in favour of anything which empowers patients and helps people to deal with their pain. However, without wanting to tar all alternative practicioners with the same brush, we have also over our years running the forums seen alongside the successes too many people at best not helped, and at worst even injured by treatments (and yes, I'm certainly including standard physio by insufficiently experienced / trained physios), and people being misled about the progression of their curves.

This is why we always recommend that while you absolutely should do whatever helps it is important - especially with larger curves and even more so in young people who are not yet skeletally mature - to be getting regular check ups with your orthopaedic specialist alongside this. It also means you don't fall off the list and have to start all over again in places where there is socialised medicine, and is equally important in the US despite insurance if you are under the care of one of the heavily over-subscribed handful of docs at the pinnacle of the field. While a Cobb angle doesn't tell you everything, the properly trained docs are well aware of this - we have members who were not given a curvature size, because they had unusual amounts of rotation or trunk shift meaning that the measurement just wouldn't tell you enough. However, it does nevertheless present an objective measure which can be checked for alteration from one visit to the next, so while it may not tell you everything about a curve, over time it is highly likely to tell you whether there is significant progression. That objective measure, and the fact that maintaining the relationship with the surgeon means that surgery *if* required will not be delayed are very good reasons to do both things, rather than just the one.

SCP
3rd December 2009, 08:26 PM
I'm in here mostly to listen and to learn from all your experiences. I will try to keep "opinions" to myself.

But I do want to emphasize one point if I may, :) and that is, there seems to be a different standard to what is considered "medical" and what is considered to be "alternative". It seems that when medical approaches fail, we give them a benefit of a doubt. When alternative approaches don't deliver as expected, it is seen as an utter failure.

I understand that this could be due to unrealistic claims made by some of these alternative therapists, and the costs involved with these treatments, but braces and surgeries are not cheap either. You just don't see the costs because it's covered by insurance.

All I ask is for people to be more open-minded and do not be deterred by one bad experience with an alternative therapy or therapist, because you could be discouraging people who may benefit.

All that after promising to keep opinions to myself. ;)

mexmom
8th December 2009, 12:22 AM
Hi spinedoc,
thanks for the wishes. You're right, we shouldn't criticize all of the alternative therapies nor therapists, just because something didn't work for an specific patient. But didn't answer the question, if your a Doctor or chiropractor?

Anyways, what really upsets me and makes me angry is when I see people (doctors, therapists, etc.) that take advantage of your need and promise you things that can not be delivered and take your money away, most of us are people that are doing an extra effort to get the money for the treatment, name it: surgery, brace or therapy, and it is unforgiveable to abuse of our faith and need of a "miracle".

I want to learn us much as I can of all of you, as well as I am reasearching all the information that I can on the web, nobody knows what future may deliver to us, but I do know that God will (as always), help us out and lead us on the right path.

Now, coming back to the discussion of measuring angles, how come a Cobb angle can be so different? how can I tell which measure is the right one, 3 people have seen my daughter, and have 3 different measures:
X rays doctor(computer measured) 18, Orthoepaedic specialist 10, and another orthopeadic and spine specialist: 25 !!
I see my daughter, and although I can tell now she's got a problem,(and that is how I found out, by watching her) I don't think people will notice she's got a problem on her spine.
Should I see another doctor, or it will make me more confused?
Iam trying to find out also if there is something else she may do besides, brace, physio and swwiming?
Also, is there a Schroth terapist or center in US south-west ? Texas, New Mexico or somewhere nearby ?
It is a long way from Chihuahua, Mexico to up North in Canada, Chicago or New York !

crazylu
8th December 2009, 04:08 PM
Hi again Mexmom. Just wanted to let you know that I feel your frustration. I find it so hard to believe that what seems to be such a straightforward problem can have so many confusing aspects. There is just no way that you can know if you are doing the right thing. I guess my main worry is that even after doing what seems to be the right thing, the outcome won't be what we want. The worst part is the helpless feeling that there really is nothing you can do for your child. It makes my crazy!! Lu

fireflymd
10th December 2009, 05:50 PM
Lu, I thought that non-progression was considered a good thing. How did your visit at Sick Kids go?

crazylu
11th December 2009, 03:27 PM
Yes Firefly non-progression is a good thing. I guess secretly we were hoping for some kind of a miracle (correction wise). Our visit to Sick Kids was kind of strange. Everyone was very nice, but we were really not able to have the kind of time we wanted with the Doctor. He wanted us to go and have her put in a hard brace right away. We didn't really have a chance to explain what we had been doing (Spinecor). We went to look at the hard brace but they didn't have a sample to show us, only a picture. They will be calling us back to book another appointment in 6 months. At that time I am going to have all my questions written down. We will be having another assessment on the Spinecor brace in Montreal before that in May 2010. We will see at that time if the brace is maintaining her at the current angles. Like I said before, none of this seems very straightforward and we are just doing what seems to be the best for our daughter at this time. Confused? I know I am. Lu

ballerinaliv
12th December 2009, 09:45 PM
i wear a spine cor brace and on my last check up to the hospital i also got told i had a 38* curve, my in brace measurements were 34.5. Yes this isnt a massive imrpovement but if i didnt wear the brace then my back would have probably be a lot worse. Spinecor may have only corrected concerened dads daughters spine by 2* but i might have halted thecurve a little bit but you didnt try it long enough to see .

fireflymd
13th December 2009, 01:55 AM
Lu, at least you know for now that wearing the spinecor brace has produced similar results for your daughter as a hard brace . From what I understand, the orthopedic surgeon told me that the hard brace is not corrective, but only meant to prevent progression in an effort to avoid surgery. I would consider that a success, considering this brace is easier to deal with (comfort/ease of concealment/better compliance).

I am happy for you that there was no progression in the curve! I think not having the support of the orthopedic surgeon is always difficult, but I do believe you are doing the best for your daughter at this time.

I have been reading a lot about Schroth physical therapy lately and plan to give that a try as well. (I purchased her book but couldn't get through it--we're going to see if we can get started on this at a center that does it.)

I was actually pleased to hear of your results!

Veevee
13th March 2010, 03:46 AM
Hi guys,

I am 23 (just had my bday woohoo), and am looking into being fitted for the spinecor brace. I have a chiropractor (not a real doctor i know, but listed on the spinecorporation website) who is sending me brochures about adult bracing in the mail so I will update you guys once I get those if I read anything interesting.

For those in Canada who were wondering about the cost on another thread, the estimate i got for the spinecor brace is about $3400, which includes fitting etc. I am trying to get my extended healthcare to cover it but it is so frustrating to figure out who i am supposed to talk to. But regardless, I am happy that the brace is finally available in western canada and that I don't have to fly to Montreal or drive down to Seattle.

I want to give a big shout out to those parents out there who are taking the initiative to do something, even if the results are controversial, as opposed to nothing. I am 100% sure that if I had the same persistent parents, my curve would not be what it is today. My mom stopped treatment completely after having a lot of money scammed by alternative doctors (ie chiropractors, acupunctures, even chi gong masters). Hopefully, this doctor isn't one of them.

As for body issues with teenage girls, for a year or two I had vowed to never wear a bathing suit at the beach. But I am no longer a teenager and consistently wear a bikini to the beach regardless of my back looking squished. I think not being able to see my back helps :). I hope that one day your daughters will also grow out of their body issues.

Eva

aqz
14th March 2010, 12:37 AM
hi veevee

i must say i found your post very encouraging,i am 26 just found out i have scoliosis dont even know degree been refered to neauro dept end of next month.But just wanted to know does spinecor work and if so does it help the rotattion of rib humps i am trying to avoid all surgical routes,i know i am pancking as i dont even know if they will even operate on me.What type of curve do you have.tell me more .

crazylu
14th March 2010, 02:21 AM
Hi Eva, my daughter (age 13) is in a Spinecor brace. We take her to Montreal to see Dr. Rivard at Ste. Justine's Hospital. As you will know from the website, he is one of the inventors of the brace. What he told us about that in the chiropractor's who are on the Spinecor website have been trained to use the Spinecor brace on adults. I think that you are headed in the right direction with seeing this person. If you have any questions about the brace or the chiropracter you should call or email Dr. Rivard. His english is very good and he truly cares about the people who use this brace. I can't remember what your curves are but at least with the brace you should get some relief from pain. Also Eva, as far as your healthcare plan goes, I know that mine covered my daughter's brace totally. Try to read your policy and see if it even covers braces or orthotics. We were lucky. I hope you are too in this regard. If you have any Spinecor questions, I would be happy to try to answer them. Oh yeah, I'm in Ontario I don't know why it doesn't say that in my profile. I will have to figure that out. Lu

Veevee
14th March 2010, 06:04 AM
Hi guys,

In answer to the question about spinecor fixing rotations, i'm not sure about that. It is more of a preventive method (at least for adults) than anything. HOPEFULLY you get some reduction in curves, but you can't count on it to fixing your scoliosis. What I like about it is it retrains your muscles so there is no muscle atrophy. I just hope that it isn't tooo earthshatteringly obvious because as an adult we tend to have dress codes at work.

Thanks Lu for your encouragement. I hope my extended healthcare covers it considering I am a university student. I know it covers braces 100%, I think the problem is getting my gp doctor to authorize it as he did suggest surgery and I think he might still be supportive of the surgical route. I think that's the difference between seeing Dr. Rivard who works in a hospital versus seeing a chiropractor, even if he is trained by the spinecorporation. Sigh.

Even though I have no more body issues, what I do worry about is, and this is kind of embarassing, but honestly dying alone with ten cats. Who wants to spend the rest of their lives with someone in a body suit? Or someone who could pass on the same thing to their kids? I know many of you are married but it is something that I wonder about. Oh and also growing old obviously.

Veevee
14th March 2010, 06:05 AM
Btw Lu. It says on the top right hand corner of your post that you are from Ontario :P.

crazylu
14th March 2010, 04:17 PM
Hi again Eva, I figured out how to change it after I made the post. I'm not quite as computer savvy as I should be. You were asking about the bodysuit and how it looks and makes your clothes. My daughter thinks it is very noticable but truly it is not too bad. She wears a size 00, and only had to go to a size 0 in some of her tighter jeans. Her biggest complaint is being warm because of the bodysuit. I think if you could find bodysuits without the sleeves it would probably make it much cooler. Or maybe just remove the sleeves if you were handy at sewing, (I am most certainly not). I know I'm supposed to say that if a guy is bothered by a woman in a bodysuit, then it's his problem, but that is just a load of you know what. Don't forget though that you would still be you, just wrapped a little differently. More later. Lu

Christine2
20th April 2010, 04:22 AM
:D