Success with Spinecor

[mariaf]

I was implying that a scoliosis specialist would be unlikely to mark up an xray in tenths of degrees.

--Linda

I would agree with that statement.

Also, I may not be dealing with scoliosis as long as some of you - but in the 8 or 9 years that I have dealth with it, I have never seen an x-ray marked to tenths of degrees either.

[Ballet Mom]

I took my daughter to the orthopedist last Friday, the new digital x-ray machines use a computerized Cobb measuring system that the doctor used in front of me. He pointed to the location on the spine he wanted to measure from with the mouse or pointer, the lines were drawn and a Cobb angle to a tenth of a degree was displayed prominently on the computer screen (displayed like an x-ray lightboard). It was quite easy for me to read the results of the digital x-ray measuing device, as I'm sure it is for other people to read. Are the people on this board better at deciding the error measurements of these systems rather than the bio-engineers who designed them? It made me remember this exact series of postings.

[concerned dad]

but in the 8 or 9 years that I have dealth with it, I have never seen an x-ray marked to tenths of degrees either.

From Linda -> I suspect I've seen many thousands of marked up scoliosis xrays, and I can't remember ever seeing one marked in tenths of degrees.

Well Linda and Maria, let me be the first to show you a couple

From a 2007 paper in European Spine Journal

One

and

Two

This doesnt mean it is meaningful to report it to the nearest 10th. My point is that is isnt necessarily a bad reflection on the person doing the reporting of the number (IE, the NYC Chiropractor).

The funny thing is, I cancelled my original appointment with him, in part, because of this very exact issue (probably influenced by the discussion about it in this very thread).(The other reason is after reading the Wong paper and seeing Rivards reply I felt it important to go to Montreal - yeah, that worked out well for my daughter - funny, that debacle boiled down to measuring the Cobb angle too).

[LindaRacine]

Thanks. I guess I stand corrected, although I still don't remember seeing other xrays marked up this way. I even have my own digital xrays, which were marked by software, and the degrees are in whole numbers. I wonder if it's radiologists who sometimes display the degrees in tenths.

--Linda

[concerned dad]

Well Linda and Maria, let me be the first to show you a couple

Sorry if this came off a bit smug. I only meant it to be just an intsy bitsy bit smug. Hence the

[jillw]

I've seen curves measured to tenths of a degree as well. Like Ballet Mom said, it comes into play with digital xrays where a program is used to measure the curve. My daughter had xrays at Philly Shriners and I could see on the computer that the curve was measured to the tenth of a degree. (Having said that, the dr. rounded to the nearest degree when telling me the size of the curve which makes sense. We probably hadn't heard as much in tenths of a degree because not all xrays are digital and for those who do have digital xrays, most probably round to the nearest degree since historically that's how curves have been presented (and of course given the margin of error, how meaningful is 1/10th of a degree)

[aterry]

Concerned Dad, what about the interaction with Dr Rivard was a debacle? I recall your Saint Joseph's Oratory post and that you'd decided against spinecore and were considering a different brace; but I don't remember a post about bad things happening in Montreal. Maybe I just missed the thread.

[mariaf]

My point is that is isnt necessarily a bad reflection on the person doing the reporting of the number (IE, the NYC Chiropractor).

No, it absolutely isn't and I honestly didn't think my post would be construed as implying that it was. Guess that's the problem with the written word sometimes. I simply stated that I had never seen, or even heard of anyone measuring in tenths - and that's a true statement.

Shriners also uses a digital x-ray machine and gives the degrees in whole numbers as well. In fact, the vast majority of orthos still use whole numbers, which does NOT make them right and somebody else wrong. It just explains why so many people found the "tenths" thing a bit odd.

Also, if most orthos will tell you that even a 3 or 4 degree change is within the margin of error, is there even a need to measure in tenths? Maybe there is, I don't know.

[mariaf]

I've seen curves measured to tenths of a degree as well. Like Ballet Mom said, it comes into play with digital xrays where a program is used to measure the curve. My daughter had xrays at Philly Shriners and I could see on the computer that the curve was measured to the tenth of a degree. (Having said that, the dr. rounded to the nearest degree when telling me the size of the curve which makes sense. We probably hadn't heard as much in tenths of a degree because not all xrays are digital and for those who do have digital xrays, most probably round to the nearest degree since historically that's how curves have been presented (and of course given the margin of error, how meaningful is 1/10th of a degree)

Hi Jill,

I was posting while you were posting

And I basically said the same thing that you did at the end of your post.

I was also going to add, but didn't, that my guess is that the doctors - even if they DID get the measurments in tenths of degrees with the newer digital machines - were rounding the numbers for those same reasons you stated.

[Pooka1]

Shriners also uses a digital x-ray machine and gives the degrees in whole numbers as well. In fact, the vast majority of orthos still use whole numbers, which does NOT make them right and somebody else wrong. It just explains why so many people found the "tenths" thing a bit odd.

It DOES make them right because they are using knowledge of the precision in reporting out the number. To report out tenths of a degree WITHOUT immediately following it with the precision range is misleading at best and wrong at worst.

Also, if most orthos will tell you that even a 3 or 4 degree change is within the margin of error, is there even a need to measure in tenths? Maybe there is, I don't know.

No there isn't. And you don't have to be an ortho to say that.

[concerned dad]

Just what kind of precision range would you suggest?
Intrinsic error? extrinsic error? intraobserver variation? interobserver variation?
I would have to say intrinsic error would be most appropriate.
and this is what a recent paper said about intrinsic error with digital xrays

The average interobserver variability in our study was 1.26。, which is much less than those obtained for adolescent idiopathic scoliosis using manual methods. The average intraobserver variability, 1.3。, was also much less than previous studies.

They then mention the main sources of extrinsic error:
The three main sources of extrinsic error are the position of the patient, the position of the radiographic tube, and the time of the day when the radiograph was made.

So, we have an interobserver variability of 1.26 degrees with digital xrays.
Should they say the curve is 30.5 +/- 1.26 degrees?
or
30 +/- 1.26 degrees?

I think a doctor would tell his patient the number to the best of his ability and say "30.5 degrees" and leave the +/- 1.26 to the technical literature.

(and I choose interobserver because you will likely have the same doctor read the next set of xrays too as opposed to his partner.)

Extrinsic error though, well thats where we have some more issues for sure. But someone sitting down and measureing a curve in a snapshot in time who can measure it precisely should measure it as accurately as possible.
My 2 cents anyway.

And aterry, you would have to be a pretty careful reader perhaps to see my "story"
see this and this
I'm not anti Spinecor. I think it may help some people, particularly young flexible immature spines (and perhaps mature spines for pain). It didnt look like it was helping us though. Had we obtained some significant inbrace correction we might have stuck with it even with the discrepancy in cobb measurements.

[Pooka1]

Just what kind of precision range would you suggest?
Intrinsic error? extrinsic error? intraobserver variation? interobserver variation?
I would have to say intrinsic error would be most appropriate.
and this is what a recent paper said about intrinsic error with digital xrays

The average interobserver variability in our study was 1.26。, which is much less than those obtained for adolescent idiopathic scoliosis using manual methods. The average intraobserver variability, 1.3。, was also much less than previous studies.

Two points I don't understand...

1. why is inter- reported out to 2 places whereas intra-reported out to one (not 1.30)? I would like to hear their reasoning on why they chose those numbers of significant figures and why they differ between the two groups.

2. Isn't intra- within the thing and therefore be the repeated measurements from one person and inter-between between things and therefore be between different people? Even if that is reversed, the results are consistent with the digital radiographic measurements being such that inter-and intra- yield about the same variability which is interesting. I wonder if it forces the choice of the vertebrae.

They then mention the main sources of extrinsic error:
The three main sources of extrinsic error are the position of the patient, the position of the radiographic tube, and the time of the day when the radiograph was made.

Yes this is the main source of variability and bias it seems.

So, we have an interobserver variability of 1.26 degrees with digital xrays.
Should they say the curve is 30.5 +/- 1.26 degrees?
or
30 +/- 1.26 degrees?

No because the measurement is still subject to the extrinsic variables. So even if the same observer used the same digital hardware/software on two sequential radiographs separated by the patient walking around the room or even breathing, the range would likely be larger than +/- 1.3. The extrinsic overwhelm the intrinsic.

I think a doctor would tell his patient the number to the best of his ability and say "30.5 degrees" and leave the +/- 1.26 to the technical literature.

(and I choose interobserver because you will likely have the same doctor read the next set of xrays too as opposed to his partner.)

30.5 degrees is not interpretable until you know the precision. Analysis of certain PAHs in sediments have a variabilty of +/- 30% or more on top of positive or negative biases. Just to pull a random example. Just reporting out the number for those compounds may or may not exceed some toxicity threshhold... you have to know the precision to be able to get a handle on if they do or not.

Extrinsic error though, well thats where we have some more issues for sure. But someone sitting down and measureing a curve in a snapshot in time who can measure it precisely should measure it as accurately as possible.
My 2 cents anyway.

Yes they should measure it as precisely as possible but report it out to the patient appropriately qualified.

We can have measurements that are very accurate but not very precise (though I don't know how we would know it) and measurements that are not very accurate but very precise (biased).

[cdfinck]

Spinecor brace

We have a 14 year old son diagnosed with a 42 degree Cobb angle. It was recommended that he be fitted with a hard brace. Our son also has Autism and we rejected the hard brace option because movement is so important to him, and we didn't think he would accept a hard brace. We did our due diligence and found Dr.Dales, an orthopedic surgeon at Swedish Hospital in Seattle and Jose Ignacio at CPO to fit our son with the Spinecor brace. The first non brace curve was 42 degrees. The first curve measurement with the brace on was 36 degrees and the second measurement with the brace 30 days later is 32 degrees. We are very encouraged. We had understood that compliance is a factor with young people and we have been diligent in facilitating the 20-23 hours a day wearing the brace. Our challenge will be the summer when our son loves to be in the water.

[mamamax]

As the world turns - and truth unfolds

Greetings Danielle/dsiceQUEEN ~

Welcome to the Adult Patients (18+) Non Surgical section of the National Scoliosis Foundation created for both traditional and alternative treatments for scoliosis, not involving surgery - and thank you for starting a Success with Spinecor thread for those of us adults either sharing the experience, or those looking into it. I see you joined in August of 2008 and last posted in September of the same year - in fact i did read your posting from back then, before i joined forum and found it most inspirational. Was sad to see you appeared gone - and am delighted to see your return. I see the welcoming committee has also returned I am both pleased and proud to find you here, and hope you will stay, and hope through our combined voices - that others will join in sharing the Spinecor experience - in a place where we very certainly belong.

I wonder if i have seen you, for throughout my life i have followed televised ice skating competitions - an interest developed at an early age .. my mother used to skate as a young adult and made sure her children were gifted with lessons. Being rather clumsy, and perhaps a bit vestibularly challenged - i had little hope of ever achieving your success. I did experience enough to give me deep appreciation/love of the art, and passed on gifted lessons to my own daughter who did far better than myself at a time when we lived near facilities. I do understand the passion and dedication that goes into your achievements as well as the personal challenges involved. Kudos.

I think i know who you are, but will not share that here. Wise move to remain anonymous in world wide forum, as even John/CD has recommended - i have also chosen that path here, and would do so in any such forum .. for the obvious responsible reasons. Look at you! Less than one day - 40+ posts/1,857+ views (and rising). There is much evidenced interest in the Spinecor brace in a place established for us, and such sharing. Thank you again NSF and Joseph O'Brien, sincerely.

I read your story and find it compelling (i.e, defined as acute admiration, attention, respect, and powerful irresistible effect) on many levels. A great blessing that this brace was available to you in your youth, allowing you to continue with a career deeply loved - and to thrive vs simply survive. Fortunate you were (as you know) to have had such loving, and with the times, parents to help meet your needs. I can understand your first reaction to it (amazing brace) as a youngster, for as an old lady (without knowledge of any other type of bracing) i also acknowledged a momentary feeling of a fenced in free spirit! Like you this has passed quickly. I'm up to wearing the brace 8 1/2 hours, as of today. Each day, i am holding the in-brace correction longer, out of brace. Today that amounted to about 45 minutes ... an amazing, near indescribable feeling. Your shared experience lets me see what the future may bring .. bless you for sharing. Being older - my clothing is more loose fitting than those my junior, so i have little worry of others noticing that i'm braced ... what others notice is that i stand straighter and taller and yet at ease. Feel quite blessed that they share those observations with me. Reading about the things that were not supposed to happen, i am reminded - impossible things are happening everyday! 5'10" eh? woo-woo! How beautifully statuesque you must be upon the ice. I started or rather left adolescence at 5'3 ... de-elevated to 4'9" over decades of struggling with progressive curves. Five foot now upon morning rising - and have measured 4'11" in brace. For me height is going all over the place like Alice in Wonderland ... another impossible thing as i complete my second week of treatment. The pain relief is beyond my expectation ... and the quality of my life rapidly improving, have even been able to reduce pain meds.

Like you, I too would urge anyone with this condition, who is free of extenuating circumstances that would require emergency surgery - to look into this method of treatment. I even hear rumor that it has been used on unsuccessful surgical patients (not requiring emergency revision) with some unexpected success .. in process of verifying that. Imagine that statement will be jumped all over - just sharing what may be at this point, a possibly little known event.

I am being treated by the same provider by the associate who specializes in neurology, Dr. Lamantia. He is as handsome in person as on the Internet! When i first contacted the office by email - i was surprised at his rapid response in calling me and patiently taking a great deal of time to answer all my questions. Yes, this office has treated more adult and adolescent scoliosis patients than anyone else in the United States - and the practice does travel world wide staying abreast of all current information through many professional affiliations which include the Canadian practice of the inventors themselves (well known and respected surgeons - who better to know the human body than the worlds surgeons and yes, chiropractors .. who are given the accredited professional title of doctors in their respective fields .. as most who understand these things know). Cannot neglect to mention Mr. S, office manager with a wealth of observational knowledge who is always forthcoming with valuable information .. he deserves a raise!

Again so glad you started a well-titled thread ... many of us, scoliosis patients using Spinecor treatment have been criticized for sounding like walking advertisements. Our experience is what it is - word of mouth certainly is the best advertising - as everyone knows. So i little understand the shillistic reaction to first hand truth, shared by personal knowledge.

In my experience as a Spinecor patient, i have heard it said that no responsible surgeon would push for surgery at your curve level - yet many pushed for surgery with me at levels below that - so, i'm not sure what to think of that comment ... i certainly think the many well respected in their field surgeons i've seen throughout my lifetime were responsible and giving me the facts they were taught to share (as recent as last year). In my experience as a Spinecor patient a certain word comes up over and again .. shill. I looked that up - the synonym would be - fraud/liar. Curious how success compels some closed minds on a mission, without first hand knowledge, to express. I have heard that my treatment is no remedy - and yet beautiful women like yourself, and one man i have come across so far in my travels ... certainly seem to prove once again to the contrary.

I don't know what the future holds for me, each scoliosis patient is unique, and each experience will differ. But i hope i can be like you - and in truth ... if years from now, i need to rely on the brace now and then (as i hear some post treatment patients do) - i will consider my treatment a success. For in my case it will mean i have avoided three surgeries, three opportunities for something to go wrong - further probability of revision surgery, my God at an age when any surgery should be avoided - and as i have been told by surgeons, the necessity of preparing to go on disability. Avoiding that, improving the quality of my life and stepping away from debilitating pain - is remedy and success enough in my book! As the research and sharing continues, i see much good reason to believe and hope for a brighter future than i may have had without Spinecor treatment. That is a fact. Who knows maybe i will one day be able to return to the equestrian activities i was advised to abandon long ago. After all, impossible, well evidenced things are happening every day.

I love and adore your story and admire beyond words your courage to share it. Please stay and continue - if you do, i will stay also for you and our fellows. I have found a super forum (ignore) feature that allows anyone to filter messages - making visible only those who post non combative questions/comments/concerns and thoughts ... have activated it as part of my personal treatment choice - this making for one super valuable thread for myself and any scoliosis patient engaged in Spinecor treatment, or for those truly seeking valuable information regarding it. Looks marvelous darling!

Will contact you privately - have other thoughts to share.

Thank you again for the tremendous courage it takes to share this learning experience ... and may your many blessings be continued!

[LindaRacine]

[B][COLOR="Navy"]Yes, this office has treated more adult and adolescent scoliosis patients than anyone else in the United States

Mamamax... you cannot possibly know this as fact. Please refrain from quoting anything other than your own experience and facts that can be verified. I am trying to keep these threads civil, and think you're intentionally trying to instigate additional debate. Future such posts will be removed without comment.

--Linda