Got approved for Schroth!

[dailystrength]

BTW I called your doctor's office and am sending material to him. I fear, however, that getting there will be even more complicated than getting to NYC because it looks like they're at the end of a commuter airline like my town which really hikes the prices!

Yes, Virginia is a pretty state. I am so fortunate to live here. I am so glad you got through to my Dr's office! Good! Yes, travel to C'Ville can be a little out of the way, but its not difficult. I could see if I could help you get from the airport or in any other way. You should certainly let me know if you are coming into town so I can help you arrange things.

Thanks for the video post! I will look at that when I get home tonight. Meanwhile I think I am going to cancel my Schroth appointment. Thanks so much for your help. It confirmed my thinking.

[dailystrength]

As bad as my symptoms are (especially by others' standards), I keep wondering if they couldn't be managed by exercise - provided I could keep them up, that is! Depression plays a role in making it hard, as does boredom. I tend to get kind of OCD about things which easily becomes either/or - not good.

Yes, I am also leery of doing the same thing day in and day out for the rest of my life, as Schroth could (might) be. I sound like a broken record but Annette Welling's book "Curves, Twists, and Bends" is a gold mine. She speaks to the psychology of exercising for scoliosis - the over-determined mindset to which I related, or her easier-going one. That was really good. She's got a lot in there so variety can be found in the exercises. She also is very encouraging in that you feel someone else is paving the road.

[Back-out]

To Be (Have the Surgery) or Not To Be (Not have the surgery)...?

I' m planning to get the book, though with some trepidation. (And thank you VERY much for your offer of help if I get there to see your great MD! Thanks for calling him to my attention) The more I invest (not financially, here, emotionally and in effort) the more confused I get about what to do.

In a way, I SHOULD be confused because the issue doesn't seem clear-cut anymore (The last time it seemed clear-cut was after I left the office of surgeon #1 on March 15th of this year. He not only spoke of a fusion from only T10 to the sacrum, but made it sound like a walk in the park, relatively speaking.

The last thing I remember is that as I was leaving his office, he pointed to a framed wall photograph of a patient in running gear. In retrospect, I'm almost sure he lowered his voice to a whisper when he said the word "walked", as in "And here's one of my recent patients as she just finished [whisper: walking] a marathon." I floated out of his office. My son (with whom I have a troubled relationship) was grinning ear to ear. Both of us felt a great tornado coming at us, had died down to a drizzle. He was gratified he'd brought me, sacrificing his Spring Break. (Little did we know what lay ahead in every way).

It was only a week later that I realized the patient hadn't actually run the marathon. But by then I'd also learned a lot of other bad news about my bone density, my lumbar spine, and the recommendations of two other surgeons which were quite different.

First, both wanted to start the fusion from T4 and explicitly told me to expect more surgery. Don't think they meant because of my particular spine, but maybe. They were much less sanguine about the surgery and what to expect. My son and I had some bad wrangles, which were due to worsen.

I've been in kind of a state of shock since. Before leaving for NYC, I'd just barely worked up my courage to contemplate undergoing the surgery itself (and what I knew were my personal liabilities in making it through), when the bad stuff was thrown at me - especially, to expect more surgery.

I've been bouncing around like a ball since, as I exercise and research, research and exercise, talking to you all at the same time. Disconcertingly, feeling better (my back)! Mountains of things to accomplish are piling up - remedial and specifically to get ready for the surgery/the rest of my life with or without surgery (ie., getting the house repaired and organized).

And asking myself all the time, "Should I or shouldn't I? How can I? How can I NOT? "

Meanwhile, the clock is ticking on all kinds of deadlines, as I try to envision the process (in its new, revised form - that is, as an endless future of spinal surgeries or at least, uncertainty. Plus certain worrying things I've learned from threads on this site). Knowing how important is for me to reach a decision - and at the same time, unsure of anything except how unsure I am.

I'm actually AFRAID of the book doing wonders for my back! Haha. These aren't exercises I can do after the surgery, right? What if they WORK? Haha.

Fooey! Sometimes I feel like flipping coins - about the surgery, the surgeon, everything! And I know my kids are on tenterhooks too. My whole family is. I want to be in control of the process but it seems like it has a life of its own. And I know for certain that the "After" will not be in my control at all. Even Lenke gives 10% odds of worsened pain! (I think he and Obachei are probably the two most brilliant deformity surgeons operating today - though far from the only competent, or even brilliant ones).

I see the same deliberations in everyone to an extent. Luckily, I have a genius physician friend I can weigh all this with to an extent. If only he weren't so damned busy! (One thing he's busy with is, caring for his wife after work - bedridden after a failed back surgery! But wait! He's 96 and she's 93, so they're both miracles no matter what. He still has a full practice!)

Enough rabbiting on - AGAIN. Wishing lightening - and clarity - would suddenly descend.

[dailystrength]

Back-Out, your ramblings are excellent. There is so much to think about and consider. Rushing into surgery is not an "easy-fix" as we would all like to think it is. We have a condition, surgery is not a miracle. It's a "must" in some cases but you need to know if that's you.

My Dr. is leery of surgeries in light of the uncertainty of the long-term outcomes. I trust his "big picture", he is up on all the research, not me. He of course does surgeries, but only if he feels it's necessary. For me, his big question was if my main (lumbar) curve was rapidly progressing. So he saw me 6 mos. later and saw that my curve had stabilized--after a 6 week PT course and exercise continuation at home (this is after my lumbar curve had increased an average of 1.5 degrees per year in the 10 years prior to seeing him). He saw me again a year later, which was my May 6 appointment, and lo and behold, the curve had actually decreased. I knew I'd been working hard to do all I learned, but I had no idea if it was working-- it was. Surgery for him was no longer even in the picture. He said if I have any new pain that shows up to come in so we can talk about it and work on it, but it would still not necessarily mean surgery. For him, at least in my case, the main criteria was that the Cobb angle had held and was not showing continued progression.

So, I don't know how fast your curve is progressing, but that was the biggest factor in his decision. Not insurance, not pressure and work and family, but strictly curve progression--a research surgeon's medical advice, which I give much more credence to than websites that give "pros" and "cons" of surgery, based on all kinds of circumstantial factors.

Yes, there will be pain and discomfort, at times and maybe even often. Yes, I have to rest more than others and can't do all the things I'd like to do. Yes, there is Daypro (an nsaid) for extra-achy days and whatever else brings comfort. And my future is still uncertain but I can tell you for sure it is looking a lot brighter than it did a year ago.

So, it took a year to assess the need for surgery - not a day's appointment. Like you this has taken on a life of it's own as other things get neglected. But did they get done before - no. They are getting done now as I feel more able and optimisitc.

There are no easy answers. It takes a lot a patience. But I hope this helps. And if the Curves exercises and biography help some, you are ahead. There must be some good reasons why my Dr. said he won't do surgery, even if I do have a little pain.

What an amazing 96 year old Dr. friend you have!!! And also what a nice son you have, who wants the best for you and sacrifices for you. Sweet!

[rohrer01]

You both are right, this disease does have a "life of it's own". For me, surgery would never be a rash decision, even if I decided to have it tomorrow. I have had this looming over my head to think about and contemplate since I was 16 years old. The last Phoenix Children's Hospital doctor I saw flat out told me that someday I would need the surgery. He guessed probably in my 40's. Has my day come? Apparently not yet. But it's coming and I've had practically my whole life to prepare myself mentally for it. If it weren't such a dangerous procedure, I wouldn't fret about it so much. It scares the life out of me sometimes, but then again, so does the waiting game. I read your posts and realize that I am not alone in how I think or what I think. All I know is that I don't want this disease to define who I am or control my life. As it stands, the disease wins as I am not able to do what I want to do. I'm not going to let it win. I will succeed in keeping myself under control, with or without surgery. That is MY determination. Thank you both for your thoughts, as they are certainly shared by many.

[dailystrength]

Thanks so much, Rohrer-- I am glad I can be an encouragement. What a wonderful post. I am working on the same - getting it under control. Aware is one thing; at its mercy is another. I am going to be aware. I do feel I can let go a little now that I've learned what helps, and maybe the rest of my life won't have to continue to wait. This weekend I had two very restful late afternoon naps- I used to never be comfortable enough for naps. Bliss! Now back to work Monday...

Who knows, maybe you will be able to get by without the surgery... in light of your recent information. Let us keep on fighting. Thanks for your encouragement!

[Back-out]

Christina your reply was lovely and heartening! Thank you.
Thank you too, rohrer.
I confess I returned to my post expecting to find some pixelated version of butterfly nets awaiting me.

It is good to know my feelings make sense to others, though it is sad we have to be "tested" this way - at least, as some would see it.

I feel for you both.

Christina, I'm so glad you got those two restful naps! Sleep can be so healing - just as sleep deprivation, can induce illness. I wish you could rest more as you feel the need! In one good SCOLI blog (WarpedWoman - a young Brit woman who's gone through the surgery) , she says being able to stop her job was one of the greatest reliefs she ever experienced. At first she was discontinued by her employers after too many medical leaves.

However, after a while she says it was a great blessing. Of course, the other side is not only financial but that work gives us structure and an identity (speaking as someone lacking in both now - not to mention $$!) But there is something to be said for not having to set an alarm clock when our sleep is impaired by pain!

Christina , I'm glad you are living near your parents who sound to be extremely supportive. I am happy for you! It must be wonderful to have a caring, handy dad who might build you such perks as those complicated SHroth rod systems.

BTW before you say it, I have studied that site, and it doesn't sound as great as I'd thought at first glance. If Shroth really does work, maybe it's worth it all the same, but I'm left wondering among other things whether or not one can download the lessons (sounds like they have to 'stream") and also whether it continues evolving after the first year of enrollment.

If you can't have it as a resource when you need it, that's quite a drawback. Yet why should you need to subscribe year after year merely because you can't refer to your original lessons? How many variations on a theme can one have? I have a lot of respect for intellectual property but when it comes to medical needs, I modify them somewhat.

Worse still, this site seems to be cashing in a good bit, especially considering that they themselves are just unofficial clones of SHROTH! Eh, maybe something else will turn up. Can't believe they could really make it impossible to download, but I guess the technology must exist to prevent it. And if someone WERE to download their lessons. then their own "piracy" could be pirated as free-wear.

If I had a spare month, it would be nice to try out their system for the free initial trial month and see how good it is!

Meanwhile. best to all of you - and Christina, whenever I think of you it's exercising and praying so you always have a companion. How lovely! Sometime, please tell me about your job,

All best,

A.

PS Still doing a slow burn about blowing $450 just to try on a sample Spinecor brace.

[dailystrength]

Thank you so much, Amanda, for your take on Schroth. Today I told the therapist that I think I will have to pass it up in light of limited resources. I don't feel quite okay with that as I wonder what their "secret analysis" is, but I agree with all you wrote, and it confirms the way things are turning out. I do feel that all I am doing is straightening me out and de-rotating me, unless its in my head, but my x-rays did seem to confirm this. I asked the Schroth PT if there were a way to try it out and she didn't have any ideas for that.

Thanks for all of the information you provided. I will have to give those sites a look after the holiday weekend. If I do have to work full-time, I am fortunate to have a job where I can sit on my balance ball chair at a desk and get up and stretch often. And we have a long hill driveway to walk on for my break. It's nice to know I have a friend doing the same!

Also there really are so many resources out there. I have found a good website but I guess I'll just have to keep doing the work. We can do it! Here it is: http://www.ctds.info/scoliosis_exercise.html

I will tell you about my job-- in a message.

Thanks for writing! Oh, and good for you for trying the Spinecor brace - let me know how you like it!

[Writer]

I think there are several reasons to consult a real Schroth PT, even in a series of intermittent short visits (a day or two at a time) if necessary, rather than do-it-yourself over the internet.

First, any PT will give you a thorough physical exam before starting treatment and will discover not only scoliosis-related issues but other things that may pertain to your treatment. Without it, you start with incomplete knowledge of your body. A spinal X-ray is a 2-dimensional picture of a 3-dimensional problem and cannot show all important facets. A Schroth PT will instantly see things in your posture and your back that will surprise you, and are pertinent to the treatment program. Problems in the lower extremities are also usually a factor, not just the torso.

Who is analyzing your X-ray and selecting your exercises at spineharmony? Last I checked, this person is anonymous (why?), with no CV. Is he/she qualified (Schroth-certified), or an enterprising entrepreneur practicing medicine without a license?

The right exercises for your individual scoliosis need to be prescribed in the right sequence. Then they need to be learned and performed precisely, lest faulty performance compromise results. It's easy to get it wrong if you aren't personally supervised while learning. A Schroth program also includes follow-up monitoring to prevent regression into old postural habits and correct any new complications.

Pain is one element that usually responds fairly quickly to Schroth treatment, assuming that the therapist is good, because many types of scoliosis-related pain are due to typical scoliotic malpostures that Schroth therapists are trained to correct. You may get significant pain relief in a session or two (I did). However, the source of relief should be postural corrections you can make consciously, not a body brace. Something seems wrong if the therapist insists on an adult patient buying a $5000 brace. The most experienced Schroth therapist in NYC has nothing to do with SpineCor as far as I know. Contact Marian Wade, her data would be on the therapist list at www.schroth-scoliosis-treatment.com

Good luck, whichever path you choose.

[mamamax]

Wait a minute ...

I Something seems wrong if the therapist insists on an adult patient buying a $5000 brace. The most experienced Schroth therapist in NYC has nothing to do with SpineCor as far as I know. Contact Marian Wade, her data would be on the therapist list at www.schroth-scoliosis-treatment.com

I was right with ya Writer, up to this :-) I know Spinecor may seem *wrong* to you, but there are many adults who are using it and receiving much benefit from it (I'm one), and some providers are also certified in Schroth (through the German Clinic), like mine - and he is on their current list of Schroth practitioners. I'm just saying ...

As for Spineharmony - I didn't like it at all, but then at the time I had a "membership" they did not have exercises for a right thoracic/left thoracolumbar curve pattern. That was basically wasted money.

[Back-out]

Spinecor and S.I.L (note to self)

Dailystrength:

Thanks for writing! Oh, and good for you for trying the Spinecor brace - let me know how you like it!

Thanks for the thought, but I'm afraid I didn't make myself clear. I blew the $450 merely to try the brace in a fitting session . At that time, to my great disappointment (I was pretty psyched up for it, by that time) I decided I did NOT want to invest in the brace for the full $5000 (as "Writer" pointed out, that IS that cost).

I was disappointed not only in the brace but the whole set up (below). However, I had become convinced in my "test-drive", that it was NOT going to make much difference to me. My goal was/is pain relief. I am sure if it had been going to help with pain, I would have felt something in the session, as short as it was. Nb. I only had at most 1 1/2 hrs to think about how it felt.

That was a bummer for another reason too. I'd been told the session was to be devoted not only to the fitting, but also to evaluation and education. The educational component was to have been an introduction to SHROTH and scoliosis exercises. That might really have been worth something. As it stands, I left not even knowing which side of my curves are convex and which concave.

I suppose that was only partly their fault since I took most of my (shortened - second post below) appointment, deliberating about whether to go ahead with the purchase of the brace. I came up with an expensive "No, thanks".

Re convex, concave - you'd think I'd have known that by now, but owing to my location, that week had been the first and only time I was able to have my scoliosis evaluated, not only for possible surgery but in general. Although, I've known for a long time I have scoliosis, it had never been examined or talked about as such when I went to one of many "back doctors". I sought one out whenever the pain got to a level I couldn't ignore. Afterward. exercise or some change in my habits, would seem to quiet it down for another few years, during which I put it out of mind.

During the last ten+ years, even though it got - and STAYED - really bad (there were cause and effect relationships, I think I understand), I was unable to get myself to a major medical center until March of this year. This was a great loss in many ways, aside from spending $450 for a wasted Spinecor fitting.

The years of delay also meant my deformity progressed to marked kyphosis and degenerative disease which are now irreversible no matter what exercise I do. , Moreover, I am now forced to decide about surgery with a terrible time deadline confronting me - i.e., the expiration of my "good" insurance, and a lot of uncertainty about when a family member will be able'/willing to help after this very demanding surgery.

TBC CAVEAT EMPTOR, Spinecor - per my experience.

[Back-out]

Caveat emptor spinecor!

I'm confident I made the right decision, and glad I resisted the temptation to proceed with the purchase, as expensive as those "thinking hours" were! Caveat Emptor to all prospective Spinecor purchasers about several aspects of this expensive product, though.

1) The try-on process.
You don't have enough time to evaluate the brace.
Of course, I had come intending to purchase it, but I think there should be a better provision made for the "what if" I experienced in my session; namely, Spinecor wasn't working for me. If one is hoping for curve impact (as the company contends for youthful users), it's fair to claim the effect won't show up immediately. For those looking for pain relief only (adults), one should feel SOME difference on the spot!

Therefore, there should be a way to wear it for a while and see how you feel. It's possible to spend as much on a reliable used car. More to the point, you''d spend hours to decide about a pair of pricey shoes. Certainly, to make a decision about Spinecor at least the same amount of time is needed as for shoes. Maybe some fitters allow for a "non-satisfaction" provision, but mine didn't and $450 is an excessive penalty. That's especially so, considering I didn't even get to walk around while wearing it. What good is the Spinecor if I keep needing a walker!?

2) And speaking of price, purely from an insurance perspective , one has to be prepared to pay for the whole thing out of pocket, if you are purchasing it from a chiropractor. At least, so it is with Blue Cross, and especially going out of state to a non-preferred provider (together, these two irregularities somehow obscure all normal pre-determination potential).

No one made any guarantees regarding reimbursement, but I was given an excessively hopeful expectation by D (whom his partner referred to with apparent embarrassment, as "an incurable optimist"). My own optimism was encouraged by his examples of successfully reimbursed clients.

This makes it especially important for you to know what kind of commitment you are making simply to try one on.

3) I do NOT think Spinecor is suitable for serious lumbar curves. The adult brace does not exert enough pressure on the lumbar spine. . Since my primary curve is lumbar, my satisfaction was guaranteed NOT to be.

4) It's also maddening in retrospect to reflect on what they were trying to sell me. In an effort to exert more pressure on my lumbar spine (what I said was missing), L hooked on what he referred to as a part of the "Old model" brace. It was nothing but a hip hugger belt made out of clear, hard plastic with metal notches for adjustment! The plastic itself was actually somewhat brittle and yellowed with age.

This junky contraption - not compressive - gave me considerably less pain relief than a Walmart spandex back brace - I have several. Only they don't cost $5000! I also have a spandex lumbar brace bought in a medical supply house for almost $100 (insurance covered almost all) . It gives me MUCH more pain relief than Spinecor.

Some complain that the materials used in Spinecor are too inexpensive to justify the price. I believe that the cost of materials is irrelevant when valuing a medical device - or anything involving ingenuity and/or scientific acumen. Hence, patents.

In my case, though, I think the salesman, I mean, doctor, who tried to sell me that extra piece of plastic junk as the primary pain relief component of the Spinecor (for ME), should have been ashamed of himself! .

He should have just abandoned ship at that point, since his product was clearly unable to meet my needs. Instead, he tried to jigger it up with a trashy attachment completely unsuited to the task. Note that two of Spinecor's claims to fame would have been completely absent in this makeshift arrangement:

First, there would have been no adjustability (by side) according to needed compensation for the individual's curves.

Second, there would have been no elasticity which is said to force the muscles to work during wearing of this "dynamic system" .

If its clear inadequacy at relieving adult pain from lumbar curves had been highlighted in the literature (as it ought to be ), I would not have wasted half of my precious day in New York. (I could have seen a first-class physiatrist instead! I’d had to drop that plan because of time limitations).

Most of all, I should NOT have had to pay a small fortune, to discover what was a predictable (disappointing) product limitation.

My son and I wasted OUR valuable time there too, not counting the cost of the lengthy cab rides going and coming. Admittedly, the "doctor" (allowing the token snarkiness of quotation marks), does invest a good bit of time in the fitting. However, the financial risk of dissatisfaction/unsuitability should be shared by the fitter, especially in view of the enormous product margin.

After all, the time spent there was in no way therapy. There was also no evident evaluation of my needs prior to allowing me to proceed with the assembly and try- on.

[Back-out]

CAVEAT EMPTOR D and L practice

I might as well add a few special sources of irritation for which I blame this partner-practice, though I won't generalize it to the quality of the apparatus. I started to allude to it in an earlier post but ran out of room. In the interests of patient education, I am laying it out here.

A scheduling snafu - theirs - led me to having inadequate time for my appointment, and added considerably to the time pressure.

I was to have seen one of two chiropractor partners, D and L (they appear to be well known here - in fact, I learned of them from positive comments here! See later post commenting on presentation of Spinecor opinion and experience)

Over a period of months, I'd spent a long time on the phone with partner D, working up to my enthusiasm and finally arranging for two sessions - Friday for the Spinecor session and Saturday, I was to travel to a Connecticut suburb to spend six-hours with D's wife (JUST SHROTH-certified) , for a one on one SHROTH educational session ($600).

D and L were planning to be out of town the only week I was able to get to NYC (my son's Spring Break). L was returning earlier though, and D, my contact, put me on his partner’s schedule, for Friday. I was to have the afternoon for a special 3-D Xray, evaluation, fitting and educational session, as described. The arrangement was debated and elaborated in excruciating detail.

Unfortunately - for me - D neglected to mention it to L!

When I called to confirm, the day before, it turned out L - this was news to him! - had a conflict. This meant my expensive appointment had to be rescheduled - becoming not only earlier but much shorter. We were - as I'd feared - slightly late too, because a previous appointment ran over.

All in all, that turned the session into a very expensive try-on, especially considering I missed features of the session which were to have been part of the "package" - the special (low radiation) Xray and the educational portion.

This, Dailystrength, is the main reason I canceled the long SHROTH session. I had lost confidence in their professionalism.

As I think about it now, especially in light of “Writer’s “ comments, I also believe that their willingness to arrange such long sessions, is not a responsible use of their clients’ time and money. How can anyone learn enough in one intense session, to retain it? I had made it clear I was unable to return for frequent checks. How could they supervise my progress or prevent mistakes in practice?

I now view this accommodation as another quality compromise, designed to enrich this lucrative practice, rather than serve their clientele. (I wonder if the SHROTH Institute is aware they are making such arrangements!)

It is worth noting in passing, that the large spinal xrays I brought were read by L as yielding a Cobb angle of 50 degrees while (without communicating) three out of three top NYC deformity surgeons, came up with readings of 58, 60 and 60 degrees. Even with a sampling this small, the discrepancy is so striking that a formal statistical analysis overwhelmingly points to incompetence on the part of L.

Perhaps I should add this to the Spinecor thread too.

[Pooka1]

Back-out, excellent series of posts that will give readers valuable information they need.

We recently had another long complaint post about these two chiros. These two posts should come to the attention of the Better Business Bureau.

D reads this group but I don't know if L does.

Chiro needs to be regulated much more. This part of it is a big scam. It's a shame Spinecor couldn't pony up more evidence of efficacy such that you can deal with real doctors to try it out. In that case, you wouldn't have been financially raped as you were.

Good luck.

[mamamax]

Back-out ..

I am sincerely sorry you had this experience. Even without knowing the other side of the story - there appears to be issues which should be addressed. My experience was vastly different, however I did not have any scheduling errors involved. My fitting time was approximately 4 hours in length and I had more than ample time to test the brace. I came into the appointment in God awful pain, which was eliminated immediately at fitting. Of course this led me to go ahead with treatment.

Had my pain not been relived immediately, I probably would not have elected to continue - I think it may be possible that elimination of pain at fitting could be a defining indicator in adult treatment. Of course I cannot possibly "know" that. My largest curve is a left thoracolumbar. I was given a choice between the adolescent model (plastic pelvic base) and the then new adult model - I chose the adolescent model based on comfort and the then current track record. Both braces tried were in brand new condition. I am not a wealthy woman and the cost has been a personal financial sacrifice - offset by 80% insurance coverage since I had an Rx from a medical doctor. The treatment has removed me from the needs surgery category - an important item to me personally for many reasons.

Going into fitting, I was well aware of the $450 consultation fee that would have to be paid, regardless of treatment decision. Comparing this to the cost of other consulting fees established by surgeons, etc ... I did not see this as something beyond the realm of expectation. The fee was applied to the total cost after I made my decision to continue.

Thank you for your posting. As I near the end of my treatment, I can see there are some issues that should be addressed in an open an friendly manner with a practice I have come to trust - towards a better way for us all.

Based on what has happened here in your specific case, I do believe Writer's advise to you is both wise and prudent. If you are able to work with an experienced Schroth provider - I sincerely hope you will benefit from it - and share your experience with us. Best of all to you on this journey!