Spinecor Adult Users

[mamamax]

..........

[mamamax]

..........

[concerned dad]

I dont think there have been many (any?) adult Spinecor users on the forum.
It's impressive that you report an immediate decrease in pain, good for you!
I would be interested to hear if it lasts (hope it does).
Also, perhaps you can comment on the elastic bands. Some folks have reported on them loosening pretty quick. Others have adjusted tension themselves with bad results (explore this further before you are tempted to self adjust anything).

On another thread you noted an immediate 2 inch increase in height followed by a 1 inch decrease. That is interesting. Do you have the capability to accurately measure your height at home?

One last thing, try not to use the small font and you may get more responses. It's pretty hard to read. Thed first thing I thought of when I (Squintingly) read your post was, 59 huh? pretty good eyesight!

[txmarinemom]

There actually was one woman a year (maybe more) or so back who was wearing one for pain management. Of course that's all it can do in a skeletally mature person, but I seem to recall she reported decent improvement in how she felt ... but I don't think she posted much after the initial in-brace period.

My largest concern about bracing an adult (Hanson expressed this same sentiment) is the risk of muscle atrophy.

Good luck.

Pam

[mamamax]

..........

[mamamax]

..........

[concerned dad]

While there appears to be some down sides to the miracle brace, I must also say this - over the last few days I have been able to perform activities that normally would have left me in agony and in week long recovery. To again be able to perform what are considered simple every day tasks without pain or without waking up in agony because I did some yard work or even just cleaned house ... is a true God send and enough to prompt me to write a stellar review. This is not however, a brace one simply puts on without protocol, self monitoring and perhaps most important, without adequate and professional follow up - so all these things, or lack thereof will effect statistics, success and/or failure.

Maxene, It is truly great that the brace is helping you. I am sure others here will be interested to see how it continues to work (or not). I have a bunch of questions and I am guessing others will have some as well.
But first off, perhaps you could tell us about your scoliosis (if you feel comfortable sharing details). Do you know what your curve is currently? Where you diagnosed as a child? Where you ever braced as a child? Did the Spinecor providors perform a pre and post brace xray? What is your curve(s) in-brace? Why would 3 distinct surgeries be necessary? What are the Spinecor doctors telling you will happen in 2 years? (Do they say you will need to wear the brace the rest of your life to acheive pain relief?) Have you consulted with an orthopedic doctor recently? Is he the one who wrote the script for the Spinecor?

OK, that's a bunch of questions, if you feel like responding to any of them it would be great.

For the sake of folks here I hope you stick around and provide updates. If it turns out good for you others may want to consider it, if bad, you could potentially save others a ton of money.

Regarding the Macleans article, I know it has received a lot of criticism here for how it portrays the surgery aspect of scoliosis. It comes across very biased against surgery which causes discerning folks to question the validity of other claims the author makes. I have read it and always wondered if the authors son continues to wear the brace to this day or if the benefit faded with time.

I would also be interested to hear about what kind of "changes outside of pain management" they say you may get. Are they telling you that after 2 years you may end up with an (out of brace) permanent change? If so, have they backed any of these claims up with data? (Not trying to dissuade you here from trying anything and hoping for the best, but I see this as being a serious point of <cough> "discussion")

[aterry]

Thanks for posting, Maxene. All the information you've provided is very interesting. I hope the forum is helpful to you. I hope you'll answer the questions from Concerned Dad and continue to post about your progress.

I was especially interested in the height change you mentioned. I'm a mother of a 16-year-old just diagnosed last fall so we are relatively new, too. At DD's last annual pediatrician visit before she was diagnosed with scoliosis the pediatrician noted a 1" decrease in height. I asked "WHY?" and she said, oh, it was just a mistake in last year's measurement. 3 months later when the scoliosis was diagnosed I asked the orthopaedist (the first of two we've seen) if the scoliosis was what caused the height change and he said, "no, that's not possible." And yet you and others have mentioned height changes after bracing and/or surgery.

[txmarinemom]

Seems any success outside of pain management (for adults) is driven by the flexibility of the spine being treated - so those lucky enough to still be flexible, stand a better chance at changes outside of strictly pain management.

Maxene,

While Spinecor may help some adults manage pain, there is no way ANY brace will correct a curve in a skeletally mature adult. It's impossible. In-brace corrections are not permanent. Sorry.

p.s using the default font on this one - really feel silly, first one's too small - last one's to big .. maybe this one will be just right [/COLOR][/B]

Actually, if you'd remove the bolding it would be ~perfect - LOL!

Best regards,
Pam

[mamamax]

..........

[Bish]

Hello Everyone!

Noticed some posts on spinecore for adults and thought I would drop a line. I used to participate on the forum but refrained from doing so after a while because exchanges of thoughts and ideas were commonly interrupted by a limited but few barking dogs on the forum.(which i see is still happening) I was fitted for the spinecore brace about a year ago in Montreal. I am not interested in poopooing the brace because I do feel it gives me intermittent pain relief from a cycle of pain that could not be broken before I got the brace. I almost think there is more at play with my body than scoliosis as well, so I may not be a fair demonstration of what the brace can do in adults. I have pain extending to limbs, crunching and popping in my spine, some vision disturbances the doctors feel are unrelated etc. Strangley for me too much time in the brace seems to do me a disservice, but just the right amount can give me a days freedom from severe pain ( the day after for some reason.) My body seems to go through a fairly predicatable cycle of pain which has always felt to me like my muscles try to do the work and take pressure off of my spine (good day) and the next day they give up and my spine picks up the slack in the form of pain (bad day). Anyways I did not have any measurable reduction in curve the day the brace was put on, nor on my follow up a few months later. Maybe my curve is too stiff, I don't know. Anyway just wanted to wish those adults trying it all the best. By the way although txmarinemom is correct about evidence supporting curve reduction that does not mean you can't try (especially if you get pain relief doing it!). Although I am sure she has done her research, she would of course not be qualified to deduce this for every person on the planet with scoliosis without regard for advancement in present and future treatment. All the best, Bish

[txmarinemom]

Pam, i would like to say that Spinecor has proven the exception to the rule regarding bracing in that it does effect change in the adult mature spine - perhaps not always and perhaps not in every case (just as surgery is not the answer in every case), but certainly more than not for those adults who follow protocol and for those without extenuating circumstances of some kind - there is change, and sometimes the change is impressive. So, there are exceptions to every rule - and this exception is only coming to light over the last five years.

Skeletally mature spines are NOT corrected by braces. And apologies for annoying you, Bish. It's the truth.

You said:

While Spinecor may help some adults manage pain, there is no way ANY brace will correct a curve in a skeletally mature adult. It's impossible. In-brace corrections are not permanent. Sorry.

Fact is, even surgery does not correct (100%) a skeletally mature adult spine.

Did anyone ever say surgery was a 100% cure? I didn't.

[mamamax]

..........

[concerned dad]

Maxene,
I think Pam, in her usual diplomatic way, is trying to prevent unsuspecting people from falling prey to dubious marketing tactics of scoliosis providers.
I would prefer to say that no one has yet proven that bracing (or physical therapy for that matter) can affect a permanent change in the curvature of an adult spine and the weight of existing evidence (or lack thereof) strongly suggests that it will never be proven. But heck, science is full of examples of overturned “truths”.

On this matter, the Spinecor manufacturers would seem to agree with Pam. Their FAQ says:

Treatment objectives for adults are postural improvement and pain reduction. Whilst postural improvements may lead to very small Cobb angle reductions, true correction of scoliotic curves in adults is not possible and should never be the treatment objective. Early results with adults are very positive, with both postural improvements and pain reduction in all patients to date.

They (the Spinecorporation) have little control over what their providers claim. Some guys were offering “vestibular testing” with the bracing. Spinecorporation came out with the following statement to sort of reel them in or at least distance themselves from this.

Vestibular testing is claimed to be useful in the evaluation of balance and central nervous system dysfunction. Because all scoliosis patients have some degree of abnormal posture and the vestibular system plays a part in the control of posture, vestibular tests on scoliosis patients always show abnormality. This abnormal vestibular function always improves naturally with use of the SpineCor brace as the patients posture improves. There is no evidence to suggest that specific vestibular rehabilitation exercises play any useful role. The SpineCorporation do not advise vestibular testing or rehabilitation exercises.

In other words, vestibular testing is a sham. What does this have to do with bracing adults? I dunno, I suppose I offer it as an example of the dubious marketing attempts of some Spinecor providers. I almost fell for it. I saw someone here (yeah, probably Pam) ripping it apart and looked into it. I have an extra $1000 in my pocket because of it.

But heck, you are experiencing pain relief. Shouldn’t that be enough? I think that is absolutely fantastic. (In this season of Passover I am reminded of the Dayenu recited as part of the Seder meal every year in my house)

This could be a very valuable thread for adult Spinecor users. And who knows, you may be in the first cohort of patients showing a permanent change in an adult spine from bracing. Stranger things have happened. I am anxiously awaiting more details.

[Karen Ocker]

Hope springs eternal.--- and what works and doesn't

Those of us with severe curve history and long term members on the Forum see the same thing over and over again. New members, terrified of surgery(normal) touting "alternatives" for significant curves. We have seen other members try these---unsuccessfully. Initially, these persons become very angry when we share out own experience and that of the scientific community. Because it is the death of a dream. Unfortunately, there are practitioners who benefit financially from this fear and misinformation.

Many alternatives give some relief for pain. Pilates helped me a lot, improved my posture(before my eventual revision), improved stamina---but I continued to lean (my handle used to be "Leaningtower") and my curves progressed.

I have seen persons eventually die from scoliosis in adulthood usually from respiratory complications. Untreated in adolescence, the curves increased 1-3 degrees a year.

There is not a single study that I have found, in the medical literature, that permanently reduces large curves, in adolescents and adults, without surgery .

We are only trying to prevent new members from making the same mistake many of us have.