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dailystrength
04-07-2010, 06:47 PM
Hey everybody-- I am so excited - my health insurance covered Schroth treatment today!!! I can't wait to talk with the therapist tomorrow to set up my times!!!

mamamax
04-07-2010, 06:50 PM
Congratulations!!!!

I know how dedicated you are to your treatment choices - look forward to the details of your experience & wishing you all the very best!!!!

dailystrength
04-07-2010, 06:56 PM
Thank you so much, Mamamax. You are my best cheerleader. I will certainly give updates. I am going thru the text now and it is more confusing than ever, so I am really looking forward to working with someone who knows what she's doing. I appreciate your support, and hope to have a positive report for all of us.

michael1960
04-09-2010, 03:09 PM
dailystrength

Congratulations on getting insurance to cover it. We were not able to do so.

Have you seen the book: Three-Dimensional Treatment For Scoliosis by Christa Lehnert-Schroth? I found it to be very helpful to better understand Schroth. We learned some Schroth exercises and it was helpful to had read the book before learning them. It gave me a pretty good idea not only what to expect but some idea of what the Schroth method was trying to do.

It is kind of expensive to buy (around $65 at schrothmethod.com or $55 at half.com including shipping). I would be more than willing to send mine to you for a couple weeks if you wanted it.

Send me a PM if you want me to send it to you. I assume it would cost us each less than $5 to send it back and forth.

I have no problem covering the shipping to send it to you. I just wanted to let you know I have one (not reading it right now) and you are welcome to borrow it.

I don't know if it is available in any libraries.

Michael

rohrer01
04-09-2010, 03:14 PM
Good for you! I hope it works.:)
Best Wishes!

dailystrength
04-09-2010, 07:54 PM
dailystrength

Have you seen the book: Three-Dimensional Treatment For Scoliosis by Christa Lehnert-Schroth? I found it to be very helpful to better understand Schroth. We learned some Schroth exercises and it was helpful to had read the book before learning them. It gave me a pretty good idea not only what to expect but some idea of what the Schroth method was trying to do.

Michael

Thank you, Michael. That is so kind of you to offer to send your book. I actually did buy it recently, and have been trying to go through it. Thanks for the encouragement to stick with it... it would probably give me a head's up for therapy. Her work is so impressive.

And thanks for encouraging this treatment, Michael and Rohrer! It will still cost a bit I am thinking, plus a three hour commute, but I am looking forward to speaking with the PT about the details. I am willing do what I have to do. We were playing phone tag today so I hope to connect with her on Monday.

I will keep you all posted as to how it works for me. I really appreciate your comments!

Christina

dailystrength
04-20-2010, 09:10 PM
Golly wally Schroth is tres chere (very expensive!!!). Not in my insurance network (edited from "doesn't take my insurance") and I and am not sure I feel like paying for this for the entire next year, waiting for, or in the very bad event of no reimbursement.... not to mention the commute, travel expense and days taken off work. Seems sometimes like there is a monopoly on scoliosis - my condition does not exist to benefit you! Sorry, but it just feels that way sometimes. (I am mostly referring here to a person in town who is trying to steer all the scoli patients to her, and I doubt her method which is Clear-inspired). At least Ms. Schroth shared her knowledge in a book - I give her a lot of credit for that.

I have contacted some local PTs to see if anyone is open to learning Schroth from Ms. Krista's book, as she indicates it is a textbook for PTs (no wonder I have a hard time following it). Very impressed with the PT I spoke with today who is open to learning and working with me!! Last I saw she does not take my insurance so we'll see soon enough. I am not to be deterred, there are always many avenues to try.

Lorraine 1966
04-21-2010, 09:02 PM
So why does she not take your insurance? Are the medical insurance companies over there so very different or do some pay more money for this than others?? Just wondering. Sorry daily strength as I know you were so very happy to start with.


Lorraine.

dailystrength
04-22-2010, 01:11 PM
I spoke with a PT friend of mine, well, my mother did, and she explained that insurance companies don't like to cover anything that is not "proven". So, how does chiropractic pass and other PT but not this... anyway, my insurance co. did give me special permission to go out of network since no one local does Schroth therapy, and they will reimburse a limited amount. I can probably do the second half next year. The difficulty was coming up with the up-front payment that the PT required, as in-network coverage only requires a nominal co-pay per visit. But, today the therapist was so kind to work with me and said she'd accept a payment plan while I await my insurance reimbursement. So that will work fine. Thank you, Lorraine! I am happy again and so excited - I will go the third week of June.

Yes, insurance coverage varies greatly here - from plan to plan within companies also! Another person sent me a PM to say they had Schroth covered for a $20 copay per day. That is wonderful coverage but very rare. I have heard that Schroth is covered in Europe much more readily. I am thankful this is going to work out for me. Yes, there was sticker-shock but since I have the approval, I am going to go for it!

michael1960
04-22-2010, 01:49 PM
dailystrength

I am not sure where you are going for the Schroth (local PT or one of the Schroth centers) but when I looked into the Wisconsin Rehab center they provided me with two prices: insurance and non-insurance.

The insurance price was about $260 per hour and the non-insurance price was about 35% less.

In several cases with some of our treatments I have paid cash up front (or maybe payment plan) to get the non-insurance rate but then later processed it myself with the insurance company.

We did not do the Schroth at this rehab center but I just wanted to mention the differences in insurance vs no insurance rates. Again, not sure where you have decided to go.

Another option to consider is that some people have found it cheaper, especially when going for a 1-2 week treatment to sometimes travel overseas due to the much lower cost of the treatment outside of the US. In some cases you can go to the same center that the PTs in the US have been trained.

I am not sure whether you are going for a 1-2 week type treatment (4 hours per day treatment) or whether you are going to a PT on a weekly basis.

Just some ideas. Good luck with it.

Michael

dailystrength
04-22-2010, 02:04 PM
Thanks so much, Michael. I wrote a long letter and sent a lot of documentation- a referral from my Dr., x-rays, and the helpful material from the therapist, etc. and so they offered to pay $2000 which was wonderful. I will do only three days to start with, and hopefully get another $2K next year; we'll see. But at least I'll get a good start. And yes, I will use the payment plan to start paying but when I get reimbursed, I can pay her the rest then.

Thanks for that info- I will ask her what her non-insurance rates are. The center is in Rockville MD, and most of the scoliosis clinics in the vincinity refer people to her, I've found. She used to work with Luke, at Scoliosis Solutions, in Fairfax VA, so they refer Schroth patients to her. Jennifer Graham -she has her own outfit now. It's about 2 or 2.5 hours from me. Yes, it's the intensive - I will do three four hour days. If I feel I need to, I will schedule the last day of the first 4-day part. But right now that's all I have coverage for. I appreciate the idea about the non-covered price- perhaps she does that. Thanks again.

Lorraine 1966
04-23-2010, 12:48 AM
Well dailystrength all the very, very best and so glad to hear you so excited again. Go for it and keep us up to date when you can. Negatives can turn into positives and sometimes pretty quickly.

bless you
Lorraine.

dailystrength
04-23-2010, 08:48 AM
Thank you so much for the support, Lorraine. You will all be with me in spirit. I will do this for all of us, for all of us who suffer and need hope, not just for me.

foofer
04-23-2010, 12:17 PM
hello Dailystrength,

Been meaning to catch up with you. I think it was you who coined the phrase, "Year of the Back". Coincidentally, I had just been telling a friend who knows my history, that this was going to be the year of the back for me. I used that exact phrase.

My guess is that I will need surgery, but I want to know that I did whatever I could and I want to be more comfortable in the mean-time.

And I have been extremely diligent with my regime. Started with switching to an anti-inflammatory diet. No sugar, no white stuff. Stopped coffee, switched to green or white tea. Kind of like boiling water and weeds, but I have grown to like it. More fish and chicken, less red meat, tons of veggies and fruit. I have to say that it has helped with the "achies" which usually rule my existence by this time of year after a long winter season of working double hard. Spring stops cold for me with work, none in May, and summer/Fall are normal work hours, less intensity. LOVE this time of year.

I also bought "your" book- Curves, Twists, and Bends. I'm thinking you may single-handedly propel the author into the black. Like it a lot and I am slowly adding in exercises and suggestions. Since I will not be working a bazillion hours starting Sunday :D I'll have more time to be on it. I also liked her "Example of a health care plan". Gave me the notion that I could incorporate a rest period at work. I already have a hydraulic table by Horn, which I highly recommend to anyone who has a desk job. I keep my table moving all day. It was the one item I asked/demanded when I took the job 4+ years ago.

I have looked into Schroth in Wisconsin and Phoenix- does not fit into the budget but I have it in mind, as surgery isn't exactly in the budget either. I'm thinking of buying the Schroth book and taking it to my favorite PT. He is very knowledgable and open-minded- he's also a chiro that will not grind on me at all- does active release work and traction. It all helps with pain and stiffness- keeps me going and arriving at work every day. The PT center also just acquired a pilates reformer, so we will play with that. I've "spoken" with Jesscv from this forum who lives a few hours away. Hopefully, I will connect with her at some point.

Taking spin classes, hiking, eating chia seeds (read the book, Born to Run- not about scoliosis, but a great read), drinking tons of H2O, stretching every time I walk through a doorway. I am going straight to heaven.

Anyway, I know my spine has its own ideas, along with my brain and my genes, but I feel better...onward ever onward.

Looking forward to hearing your reports on your ventures.

Foofer

dailystrength
04-23-2010, 04:29 PM
Amy, good to see you again. I am so glad to read of the changes you have been able to accomplish, and the positive results you have gotten! Isn't that book an encouragement - I think her curves are in the 60s also, or at least one of them. And she manages to live without pain unless she skips her routine for a few days! I too eat pretty healthily- try to have lots of fruits and veggies, only whole wheat breads if I can. I need to up the water intake tho; I love decaf coffee.

And yes, I was the one who calls this year "The Year of the Back". It has been a lot of trial and error and I'm glad I can share my best results. I have high hopes for Schroth and wish I didn't have to wait 2 months to start. I have alleviated my pain for the most part, but want to do all I can to avoid the necessity of surgery when I am 70. I hope to know how to move, stand, sit, etc. to best discourage increases in the curvature.

Good for you about the gym also - your spinning is an inspiration; the Pilates too. My winter season at work is the busiest also, and I could not manage the gym. I have been diligent with the Curves book however. I may try to get back now, thanks! I also have biked and hiked and now I am learning West Coast swing dancing, but can only go about once a week. I still walk most days at lunchtime for about 20 minutes.

I am taking it that you are not insured-- or else you could apply for Schroth PT. Jen Graham has a letter for insurance companies, and my Dr. wrote a script for it when I asked, which is why I got covered, I think. He is the best. SRS Neurosurgeon who is conservative. Surgery is usually covered. But insurance will change in 2014 so you may have hope there.

Thanks for the inspiration, again. The Year of the Back is well underway.

foofer
04-23-2010, 04:56 PM
Hello again,

Yes, I do have insurance through work, but it has changed yearly and is a bit challenging. I have a 3500 deductible and then everything is covered at 100% after that if in network. But, come to find out that PT has a separate category with a 5000 deductible. Takes awhile to get there! I pay for my PT privately with a local rate. One of my off-season tasks is to sit down at the computer, pull up my ins plan, get out my magnifying glass, and figure out my options. Then next Oct it will all change again and hopefully not get dumped. Troubling times.

Great that you take the Western Swing class. I love that stuff....The spin instructor is always saying, "The best workout is the one you do." If you love it, you do it....(maybe). My biggest challenge is to stop reading about it, and planning to start it maybe Monday, and just do it, as the saying goes. Have been way better lately. Still I want to do more.

Let's kick a little *** this year!

dailystrength
04-24-2010, 12:15 PM
Thanks for your reply, Amy. Be sure and see what Michael had to say about the non-insurance rates. Doesn't seem right that we have to pay for no fault of our own...:(. I hope your research brings some helpful ideas.

I also contacted the Scoliosis Rehab place in WI and got a wonderful, informative note back from Kathy re: the goals and methods of Schroth, esp. for adults who may have some degeneration. My ins. may change July 1... I guess they all just keep us wondering :rolleyes:

And 2 friends want me to go to the Swing Dance tonight so I may just go... I love your quote about the best workout is the one you do. :D Thanks. Silly here with all these faces.

Have a good one, Christina

Andrea
04-24-2010, 11:02 PM
that is great, make sure you are seeing a Certified Schroth Physiotherapist and do the home exercises daily

dailystrength
04-25-2010, 09:29 PM
Thanks, Andrea. Have you gone through it?

So sore this weekend - one night out dancing last week was enough for me for a month I guess. Had a massage which helped loosen things up. Not in pain, just exhausted from the pulling. Can't wait to learn how to move better.

Bigbluefrog
05-08-2010, 07:26 PM
Thanks so much, Michael. I wrote a long letter and sent a lot of documentation- a referral from my Dr., x-rays, and the helpful material from the therapist, etc. and so they offered to pay $2000 which was wonderful. I will do only three days to start with, and hopefully get another $2K next year; we'll see. But at least I'll get a good start. And yes, I will use the payment plan to start paying but when I get reimbursed, I can pay her the rest then.

Thanks for that info- I will ask her what her non-insurance rates are. The center is in Rockville MD, and most of the scoliosis clinics in the vincinity refer people to her, I've found. She used to work with Luke, at Scoliosis Solutions, in Fairfax VA, so they refer Schroth patients to her. Jennifer Graham -she has her own outfit now. It's about 2 or 2.5 hours from me. Yes, it's the intensive - I will do three four hour days. If I feel I need to, I will schedule the last day of the first 4-day part. But right now that's all I have coverage for. I appreciate the idea about the non-covered price- perhaps she does that. Thanks again.

You got your insurance to cover schroth? I have been trying to get it covered too. I paid out of pocket for the first week of therapy and am waiting on the 2nd week.

I did see some improvements in her posture and she grew about 1/2 inch in length from 4 hours a day traction. things you have to think about is how are you going to continue this treatment at home. My dh built the bars w mirror for under $100 but if you order through them it may cost more.

Ambrea exercises 1/2 hour a day doing the schroth exercises...it is hard on her palms, blisters now calluses.

could you send me any hints or what you did to help get coverage?

thanks!!

Bigbluefrog
05-08-2010, 07:29 PM
pictures from scroth643

dailystrength
05-10-2010, 08:29 PM
Hi Bigbluefrog,

The picture of Ambrea doing her home exercises is great! She should be a Schroth model! :) Good for her for keeping it up. She will be grateful as she gets older.

I think the biggest factor for me getting approval for the Schroth method was that my surgeon was willing to write a PT referral specifically saying "Schroth". I was very grateful that he did that. My insurance company (Anthem) approved it based on the fact that "the needed therapy was not available locally". Also, Jennifer Graham has a prepared set of letter to submit to insurance companies. I also enclosed a print of my x-ray, and wrote a full page letter explaining what I had done, why Schroth was the best PT program for scoliosis, and my goal to avoid (costly) surgery.

Yes, I thought I would see if I could get someone to put bars up for me in my condo to save costs- I'm hoping my dad can do that. Where did you order the materials from or buy them?

dailystrength
05-20-2010, 09:55 PM
Hey there - with Schroth not as "free" as I thought it would be, and now looking more like $1000 despite insurance and that's if they even decide to pay in the end, for the first three days of intensive treatment (12 hrs.). I am on the fence.

Has anyone had experience with Schroth - positive, or negative, that they would like to share here or by PM? I'd appreciate input. I'm leaning toward not going forward with it at that cost. The Curves book and whatever else I'm currently doing has reduced my curve 5 degrees in the last year. So, sure Schroth would be wonderful to learn from but things are going okay at the moment, so I don't really see it as a necessity. I do need to let her know ASAP.

Thanks!

rohrer01
05-21-2010, 12:46 AM
Hey there - with Schroth not as "free" as I thought it would be, and now looking more like $1000 despite insurance and that's if they even decide to pay in the end, for the first three days of intensive treatment (12 hrs.). I am on the fence.

Has anyone had experience with Schroth - positive, or negative, that they would like to share here or by PM? I'd appreciate input. I'm leaning toward not going forward with it at that cost. The Curves book and whatever else I'm currently doing has reduced my curve 5 degrees in the last year. So, sure Schroth would be wonderful to learn from but things are going okay at the moment, so I don't really see it as a necessity. I do need to let her know ASAP.

Thanks!

I would also be interested in successes or failures. Linda doesn't seem to think that surgery would be the best option for me right now. I do trust her judgement being a scoli patient herself AND working in the field. I just don't know what to do....:confused:

dailystrength
05-21-2010, 08:47 AM
Yes, I read that yesterday, Rohrer. I am sure that was a surprise. It is true that the Drs. are careful to say surgery won't necessarily take away your pain. I know that many here do report being pain-free after surgery, but as you know, each case is unique. And like she said, it is irreversible.

I am praying for you. You know, I'd never think of lifting children, and you talked about moving grandchildren in and out of car seats (was that you?). I have given up the idea of even having children, here at 44 (well, no husband is a factor :)), and in light of my spine. I just know with my lumbar curve, it would throw it out. As far as adopting or such, really I am afraid, or rather very cautious, about lifting. When I visit my wonderful nieces and nephews (I am blessed with four and another due in a week!), I notice the strain after holding the baby even for a short time.

Back-out
05-21-2010, 09:40 AM
sorry, all, for focusing on one detail of interest to me.

Dailystrength:

I notice the strain after holding the baby even for a short time.

In the last few months, I have been noticing for the first time I recall (takes a while to sink in, I think), that holding things - anything! - in front, and clasped to my chest, is REALLY hard. Painful, and if I have to carry it any distance, in short order, I am outright hunched over clutching it.

This seems really weird to me. I'm sure it makes perfect sense in terms of body mechanics but I can't imagine what they are saying. (Something like. "your lower spine is kaput" maybe. :eek:)

It's so weird and different, it's scary. Aging, spinal deterioration usually moves slowly and as it becomes "the new normal", I have trouble remembering it was ever different (like gradually accepting I can't reach a shelf that used to be easy. Shrug, adjust, get used to fetching low stool - then carry on and forget the shelf used to be "lower").

This, however, is dramatically different and seems to have happened overnight. It's not a strain, and whatever it is, is definitely not going to spring back into place. :confused:

When you spoke of it's being hard carrying the baby, I wonder if you meant in this position. I sure can't imagine carrying a baby now. :eek: Talk about "tipping points!" I sure reached one. I go from upright (almost) to doubled over FAST. I'm considering trying to carry the laundry basket on my head :p. In front, it's no longer possible.

Anyone else notice a difference in carrying things held in front? I thought this was supposed to be the easy way. In fact, I think it USED to be for me! :(

Back-out
05-21-2010, 10:19 AM
I was scheduled to go to CT to have a day's SHROTH training session with the wife of one of the best known NYC SpineCor fitters . She is a German certified SHROTH trainer as are all three in their practice. I canceled for practical and emotional reasons (see PS).

I note though, that they often schedule one one one sessions like that for a full day (cost ~ $650). They recommend you bring a camera that can take videos to capture you doing the excercies for later reference. I gather (thought) that this intense session was supposed to tide you over indefinitely after teaching you the basics.

Some of it is reimbursed by (most) insurance -maybe some even pay all. Meanwhile, even though common sense says you'd do better to have later practice sessions under supervision, I wonder if this is a realistic 'second best" to learn enough SHROTH to improve your fitness and scoliosis management lifestyle. It certainly saves a lot of travel time for most of us.

Come to think of it, many people do pretty well learning certain techniques with videos especially with mirrors to self-check. That is an even more cost-effective way of trying to take advantage of SHROTH. Seems to me you'd need at least an hour (maybe more and/or a follow-up) to individualize the exercises for your particular curves.

Not saying this is ideal by any means. Just a way of saving time and money.
I'm very curious about it. Why isn't there movement afoot whereby well trained patients teach other patients as a public service - with no pretense that they're certified, of course? Seems to me it's not dishonest, as there's no pretense that you're as good as "real" SHROTH trainers. There's so much suffering out here, and not everyone can afford it, as we well know. Even accesss to trainers is hard. (Don't know about you all, but traveling is hard for me).

SHROTH MUST help some, or it wouldn't attract so many paying adherents. (How MUCH it helps is the question)

I told the Spinecor fitter, I was deciding against the brace for the time being because as things stood, I had no way of making the cost:effectiveness calculation. There was no way to determine cost, and the pain relief was nowhere as much as I'd hoped, so I couldn't decide. Both variables were missing.

I feel much the same about SHROTH, given the price. I can't imagine a book would suffice, but are there no videos? If not official, what about Bootleg? I'll bet You-Tube has something. (going to check...)

NO PS. Ran out of space to explain cancelling the session. Without detail then, I'll just say they made a scheduling snafu that inconvenienced me greatly...:mad:

dailystrength
05-21-2010, 10:38 AM
Back-out, I get pain and cramping when I am in a slightly forward bend position- just can't do it. If it hurts, don't do it, is my reasoning; it's not good for me. I am very conscious of how I move. I try to keep my trunk upright and bend at the hips only if I must bend forward, using leg strength. If it hurts, I stop; it's not worth the pain. My bathroom sink can be a culprit and of course cleaning, I have to do it very carefully, breathing out into the weak side. And wash up quickly. I don't do much makeup for that reason, but standing at a close mirror is fine- just not bending over the sink to see close in the mirror. Washing dishes - can only do short bouts (I have a dishwasher but don't use a lot of dishes) - I get gadgets that will make meal time prep simpler (GT Express the latest- just wipe out! It's kind of scary though - gets so hot!). Strenghtening core muscles is important- I use an exercise guide. As far as the laundry basket, I put it on one hip. Its the lifting that can cause problems. I can't carry it in front. So with the baby, it could be the lifting and shifting you do with a baby.

Just keep the core tight and don't strain by trying to carry, lift, or stay in the bent forward position. As my PT said, the muscles of the back have trouble working together. Pain means I am irritating the "bossy side" as Annette Wellings says in Curves, Twists, and Bends. Of course its not always possible, and I do get muscle strain, like I know it's really bad to carry my groceries in one bag on my shoulder - but it doesn't seem to irriate me that much. My dad used to say "listen to your stomach" when we were ill, now I try to "listen to my back".

Back-out
05-21-2010, 12:30 PM
That was a BIG help, Christina, Thank you!! Your suggestions and comments are most appreciated and very kind of you (I'll put them into practice)

Truthfully, just knowing I'm not the only one with this problem (carrying things held to my chest), is the best news! I never heard anyone else complain of it nor did I myself ever have it before.

And to think how long I nursed my own two babies, including walking at the same time, if needed! HAH!

It was also fascinating to hear your comments on the slight forward bend at the sink! Wow! You'd think on this Board no one would feel self conscious, but by Jiminy! It still feels good to find you're not alone with a symptom. Speaking as someone who needs to lean on the sink even to use a toothbrush (and that's an electric one!). Like Jess, I find myself going through the day, trying to measure everything by the standard of "how could I manage this 'Afterwards'? etc.

I wish I'd come to terms with this sooner and thus didn't have such a time constraint to decide.
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.

SO, I just somehow blew the whole morning looking at You-Tubes about scoliosis. It was fruitful, but I'd have done better to get my exercises out of the way. That includes the treadmill. Been skipping that lately too. Extra bad as I really need to get back into cardio fitness. My BP has crept way up. Either that, or my new Walmart's device is defective :confused:

OTOH, here is one find that may help others. I don't think it's anywhere here else unless the Search engine isn't working.

http://www.spineharmony.com/exercises

They have an online program which is $200'year with a month trial period. It can't be submitted to insurance but OTOH I think it might be even better than going to a SHROTH therapist, as you can play it at home when you choose and as much as you choose. If you're lucky enough to have a dad to put the bars up for you, it might save you a chunk o' change.

I've found many of the scoliosis exercise videos on YOU TUBE to be useful - the DON'Ts at least as much as the DOs. I was super interested in watching ways of handling my lumbar hump (word!:()

If only I could raise the bar resting on the upper frame of my bathroom door higher, I'd have it made (makes it complicated when guests are here. It has to be removed temporarily as needed. :o Alasl it's the only door frame that works with the apparatus, and my other baths need to be restored. More contracting work to get around to before surgery.

IF I have surgery. I really must make a commitment sooner or later (or sooner). 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!

I didn't know he separated his surgeries by a month! That's very unusual. You're so lucky to be near him (How close by are you?) . He sounds like a real winner, Fascinating to learn his brother is also a neurosurgeon - I accidentally called there first. Virginia is such a pretty state, I'd almost venture say the PERFECT state - rolling hills, not too hot, not too cold. Of course, I've only been there a few times to the most scenic spots (Wiliiamsburg?). I'm sure it has its armpits like all states, but I didn't see any.

dailystrength
05-21-2010, 04:20 PM
I'm very curious about it. Why isn't there movement afoot whereby well trained patients teach other patients as a public service - with no pretense that they're certified, of course? Seems to me it's not dishonest, as there's no pretense that you're as good as "real" SHROTH trainers. There's so much suffering out here, and not everyone can afford it, as we well know. Even accesss to trainers is hard. (Don't know about you all, but traveling is hard for me).

SHROTH MUST help some, or it wouldn't attract so many paying adherents. (How MUCH it helps is the question)

I agree with you totally here. Yes, those were my thoughts exactly. Why does it have to be "patented"? When so many are suffering? When I find something that works, I tell everyone I know might need help! It makes me wonder if the founder indeed meant to help as many as she was able, with her text publication (well her daughter published it), but now it's become one of those exclusive things - yes, when it comes to people suffering, I just have a fundamental problem with that. Granted they want to make sure the exercises are done correctly, but yes, why so much investment - why not a few sessions?

I'm going to do some you-Tube searching (haven't read your second post yet - at work here on a quick break)-- but I think the bottom line is, like you said, I don't have resources to put to unknown outcomes. If I knew it was necessary I'd find the funds, but maybe this is a good thing- my limitations.

dailystrength
05-21-2010, 04:32 PM
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
05-21-2010, 04:59 PM
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
05-21-2010, 11:04 PM
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? :o 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
05-22-2010, 06:44 PM
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
05-23-2010, 12:42 AM
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
05-23-2010, 09:40 PM
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... :rolleyes:

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
05-25-2010, 06:31 PM
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. :mad:

dailystrength
05-26-2010, 12:58 PM
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
05-28-2010, 04:09 AM
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
05-28-2010, 09:27 PM
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
05-29-2010, 12:55 AM
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. :eek:

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
05-29-2010, 01:32 AM
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!? :confused:

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! :eek: The plastic itself was actually somewhat brittle and yellowed with age. :eek:

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! :eek::mad: 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! :mad:.

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! Id 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
05-29-2010, 01:36 AM
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. :rolleyes:

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
05-29-2010, 06:34 AM
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
05-30-2010, 09:54 AM
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!

Pooka1
05-30-2010, 01:42 PM
http://www.scoliosis.org/forum/showthread.php?t=10201

These guys have no shame. They aren't trying to help. They are trying to get rich off desperate people.

rohrer01
05-31-2010, 12:40 AM
http://www.scoliosis.org/forum/showthread.php?t=10201

These guys have no shame. They aren't trying to help. They are trying to get rich off desperate people.

I can attest to the fact that there ARE desperate people out there, including me, otherwise I wouldn't be here. I'm looking for solutions that the surgeon can't/won't give. I live in chronic pain and don't want to be on drugs. What options do people like me have, really? These situations drive people to desperation. It's too bad that this supposed doctor did this to that poor girl and charged her parents so much money besides. I think this guy is still using these methods, though. Just not with that doctor. Although I could be wrong.

Pooka1
05-31-2010, 09:16 AM
I can attest to the fact that there ARE desperate people out there, including me, otherwise I wouldn't be here. I'm looking for solutions that the surgeon can't/won't give. I live in chronic pain and don't want to be on drugs. What options do people like me have, really? These situations drive people to desperation. It's too bad that this supposed doctor did this to that poor girl and charged her parents so much money besides. I think this guy is still using these methods, though. Just not with that doctor. Although I could be wrong.

Yes pain can drive people to try anything. People in this pain state are extremely vulnerable and liable to make bad decisions. (Equally scared parents are driven to make bad decisions unfortunately.) I think more regulation of chiro and maybe even disallowing them to fit orthotics is in order. These guys have ZERO relevant training in scoliosis or orthotics and shouldn't be raking in millions from hapless patients. It's risible.

Spinecor is a special problem within this constellation of chiro problems. The great run of legitimate doctors (i.e., orthopedic surgeons) do not use the brace for whatever reason (first-hand viewing of lack of efficacy, suspicion of bad data in the positive Spinecor papers, existence of studies showing no efficacy, etc,. etc.). Because of this, Spinecor has turned to chiros to push the brace. There is an obvious liability in doing this and it can be seen in the now two complaint threads about this NYC clinic hawking this brace.

I wish there was evidence of efficacy so surgeons would prescribe Spinecor and thereby get the brace out of the unschooled and nefarious hands of chiros who should NOT be treating scoliosis FULL STOP. Why can't they be prosecuted for practicing medicine without a license I wonder?

Last, there is a web site with comments from chiro school students. These are actual students talking about the schools. I suggest it is IMPOSSIBLE for a rational person to ever go to a chiro for anything after reading that. That said, they occasionally get an able person. I continue to be impressed by Morningstar who is explicitly an evidence-based chiro. He should have gone to medical school. The rest might as well be singing.

jrnyc
05-31-2010, 05:19 PM
hey rohr
i am on pain meds...for several years, now..i would have had to leave work even earlier if not..as it is i left work sooner than i wanted to, and took a big pension cut in the process...but the pain was too much to work the job(s) i had...5 flights of stairs (no elevator) all day didnt help, either...and the fact that i took my work seriously...well, there were those in the NYC DOE who told me to take it easy and slide...but i couldnt..being a social worker to disturbed kids was something i took very seriously...couldnt do it half-as-ed, either...

i would not survive without pain meds..life would be truly unlivable! so i deal with the side effects, consider surgery, and make the best of it...i'd rather do that than waste money on some doctor or pseudo doctor who offers to help while taking money for nothing...

everyone does what they have to do, so i try not to judge anyone's choices...i just try to make the best of a bad situation...a situation that has been slowly worsening over the years...

i hope you find some answers that help your situation...

jess

Back-out
05-31-2010, 09:49 PM
pooka

The rest might as well be singing.
Hey, singing can be VERY helpful! I'm listening to a terrific NPR series on music in the human experience (their "The Nerve" series). Their broadcast on music and spirituality was spectacular. Actually got me to dancing - on the floor (I'd been exercizing). Was much looser afterwards.

pooka, I have a strong feeling that these guys believe in what they're doing. Fabulous Social Psychology research in "Attribution Theory " points to salesmen, almost invariably becoming true believers in what they're hawking, They can't do it otherwise - in terms of charisma and their own self image! People (incredibly?) need to see themselves as decent souls. They draw their lines in the sand, and with greed, the line grows fainter and fainter. But it's there. They have standards!

"D" is a true charismatic. Thank God he didn't found a school of spiritual healing or start an investment scheme. He could have raked in a billion. (Now Madoff did NOT believe in what he was doing...) Hope this doesn't give him any ideas. I think he has sold himself too, on his integrity and product, though.

That said, you are 1000% right about desperation. The pain combined with fear of the surgery, make us half convinced by the time we start to read or talk to them.

More later on how I got enthused about them from information here. Landed on one of "the glowing testimonials" sections and called them, before seeing the "debunking, angry declamations" and by then it was pretty much too late. I was a convert both of "D" and my own need to believe.

We MUST organize the data better. The main Spinecor thread is over 250 pages now (with arond 350K viewings!). A rating system filled out by first-hand users, must accompany their narratives, just as it is done at Amazon, Epinions, VITALS, etc., etc.

Back-out
05-31-2010, 09:53 PM
There's another problem that makes for ready converts beside those listed above. There IS, sorry, something a bit secretive about the surgeons too - not enough data sharing, and too much ego and MDeityism, to make it pure science. It makes patients more receptive to charlatanism and exploitation from the little medical companies like this one, not recognized (yet) by the BIG BOYS of the healthcare industry.

The more one knows about approval at the top (especially in promoting medical devices and pharmaceuticals) the more one realizes that the "respectable" (insurance-reimbursed) white-coats are just another variety of scam, PRETENDING TO BE EVIDENCE-BASED. Not all, not down the line by any means! - but enough to make what we like to think of a safe system, terrifyingly spotty because of corruption. It starts right in medical school. My God, the Harvard Medical school - typical - is half funded by Big Pharma. There's no way to get an education in "pure science" with such built-in bias. The students only recently demanded and got, a course added to the curriculum, on business and bio-ethics!

No wonder the little guys want to cash in and even feel entitled. Pain and Fear of Death - they're great sellers everywhere. The difference between the accredited and the rogue purveyors and schools, is much fuzzier than the public realizes, though. :(

Good doctors and honest researchers realize this the most, yet they too find it all frighteningly easy to be seduced by the lure of the (enormous) sums of money changing hands - the easy ways to cash in. There have been fascinating exposes in the NYTimes, about this. My favorite was an article by a first class psychiatrist. He analyzed himself, describing how he had been recruited to represent manufacturers of psychotropics he prescribed. Beginning with simple luncheon dates at his convenience, saying what he thought (he thought) , it turned into a lucrative second job paid by quasi honorariums and perks. He was barely able to see what he had become, until after trying (and failing) to get more complete clinical information, he gave increasingly lukewarm endorsements. He was soon terminated. And liberated, he says.

A few disturbing facts, starting with one I hope I haven't already recounted here:

a) A bill to allow MDs full access to ALL results of clinical trials (not just the ones supporting approved products) has been languishing for years in Congress. It continues to be shot down, even though access to the site would be via restricted Internet. Probably, "they" are afraid there are too many scrupulous doctors out there and/or that that the data would be hacked and released to the public at large.

FWIW, most anti-depressants narrowly, if at all , surpass the effectiveness of the great drug PLACEBO.

b) Likewise, doctors pitch (insurance-reimbursed) medical/surgical products of inadequately demonstrated efficacy and - worse - safety. This is via hugely lucrative testimony and lectures - all under the pretext of sharing unbiased, positive experience in the field. Of them, surgeons do this most of all (and among them, the worst offenders are orthopedic spinal surgeons! :rolleyes: Why no barfy emoticon?) .

An example is an artificial disk (which had a much poorer track record than represented). Its primary endorser- spokesperson was a top spinal surgeon who was revealed to have collected at least 1/2 million bucks annually in testimonials, etc. I hope he gets a defective heart valve or pace-maker endorsed by a crooked cardiac colleague! (But insider knowledge surely protects them!)

c) The way drugs are promoted and sold - many, many kickbacks - is unspeakable. But then again, so is their R and D...As I said, clinical trials revealing negative or neutral outcomes (especially after FDA approval - also flawed), are not available outside the industry. When you cherry-pick disclosure, you are left with "facts" which are actually powerful lies.

d) I was disconcerted - no names - when a scandal broke (suspiciously muted) in the NYTimes revealing that 2 of the 3 surgeons I was planning to see in NYC at that point, had just been implicated in a major conflict of interest scam. They'd approved and/or worked with spinal devices in clinical trials, while having large investments in the products.

Kosher? All know the FDA Rules, but they claimed not to know they weren't allowed to play this game. At that point, I just had to hold my nose and proceed. Who else was left? I'm sure many more were involved besides the publicized names in the paper. If unclear, this is a double scam. First, they are supposed to reveal (and be "recused" - the equivalent) from participating in trials of products they own shares in. Second, knowing it was going to be approved, they profited from insider trading. This is contrary to investing (haha) "standards".

Nb. The HSS (Hospital for Special Surgery) has since formulated an official policy of not investing in products they use - actually, something else, something more obvious, referencing this scandal indirectly. It's in their newest literature.

Pooka, the "real" Medical Care establishment itself is corrupt, and, I'm afraid, the US most of all, because it's most profit-driven - supported in the way its over-seen and incentivized. The built-in "moral hazards" are enormous, and, of course, many succumb. The more it happens, the more it happens, because "everyone is doing it" is institutionalized in the minds of practitioners and gov't officials profiting from kick-backs and hush money. US citizens finance most of the R & D, since foreign countries with controlled care delivery systems, protect their citizens (somewhat) more against bad products and also reduce inflated prices through bargaining power at the top. But that part's all well known by now.

Money corrupts, great money corrupts most, blabla, and is the equivalent to power in our society (the original Greek maxim). Money buys influence, respectability, (insurance reimbursement?), and legal wrist slaps for revelations....

And - still more complex - desperate patients themselves, can abet the corruption, but pushing for approval of marginal treatments and devices,. On the one hand, they grasp at straws of hope in unproven remedies, for their suffering and dangerous conditions.

On the other, the same wish to believe, obfuscates their ability to evaluate the benefits of various treatments. Scoliosis is in many ways an ideal "mine canary" since being architectural, at least at end- point, it is easier than most conditions to be studied in measurable units.

But the accompanying pain and its evaluation? How to evaluate that? It's very clear in a post surgical thread, how subjective pain is and how many mediators there are, including PLACEBO.

What (insured) patients are pushing for, is more unsubstantiated approvals - so they pay less for treatments.

Why single out the poor, chiro-businessmen? Their product apparently helps some! What rankles most, is that since their product isn't insurance reimbursed, not well, the clients are out of pocket when disappointed. They feel (and resent) it more when dissatisfied. Meanwhile, (wrongly) approved products don't zap the little guy when they don't work (not counting *wince* parts for spinal surgery ) How many times have we shrugged after being disappointed by a shoddy product sold at inflated prices through a "Legitimate" medical supply house? (Note this is only true of ineffective products, not DANGEROUS ones!)

It's not simple. These chiros "just" want their tiny share of the pie of US Medical Care Corruption. The rest of the bakery has already been sold off full fee.

Not condoning them, just putting them in context.

In a way, I almost see them as scapegoats for a broader rage and frustration. They don't have a big glossy showroom, Pooka. Their scales don't work, they only have one Walmart quality mirror passed from room to room. They're just poor shlepps in a tiny office with nothing to recommend it but its address. There's more, sure (the flights, the expanding business, the pseudo research and testimonials) , but right now, they're small fish who stand out because of the insurance issue. We'd like to think that reflects more real respectability than it does.

Unless they do outright harm - other than theft!:rolleyes: - they might as well be selling over-priced shoddy vacuum cleaners using expert sales techniques (in which science is one tool). They believe in their product -- more or less. :rolleyes:.

At least, they're little fish until when and if they make enough dough to buy "respectability" and official acceptance. (It's all for sale) Meanwhile, it's not like they're selling defective $200,000 artificial disks approved in backroom deals by crooks with MDs and medical school appointments! :( :mad: :(

rohrer01
05-31-2010, 10:32 PM
Yes, I got taken. There, I said it. No Rx for my pain except an Rx. The scoli docs won't touch me, yet. I guess my mistake drove me one step closer to the O.R. How ironic is that? Maybe I'm just a wuss like everyone thinks. :o

Pooka1
06-01-2010, 02:15 PM
pooka, I have a strong feeling that these guys believe in what they're doing.

So do all manner of nonsense purveyors including flat earthers, alchemists, evolution deniers, etc.

They are all still purveying patent nonsense.

Many people are honestly deluded. It's a reason for pushing counterfactual claims but not an excuse. There can be no excuse to that.

Pooka1
06-01-2010, 02:53 PM
A few disturbing facts, starting with one I hope I haven't already recounted here:

(snip)

b) Likewise, doctors pitch (insurance-reimbursed) medical/surgical products of inadequately demonstrated efficacy and - worse - safety. This is via hugely lucrative testimony and lectures - all under the pretext of sharing unbiased, positive experience in the field. Of them, surgeons do this most of all (and among them, the worst offenders are orthopedic spinal surgeons! :rolleyes: Why no barfy emoticon?).

Posterior spinal fusion on a kid progressing 5* a month for at least 5 months to go down from a 58* curve to produce a 5* curve where she looks/normal and is adequately demonstrated in my book. You are clearly referring to other procedures in re "inadequately demonstrated efficacy."


An example is an artificial disk (which had a much poorer track record than represented). Its primary endorser- spokesperson was a top spinal surgeon who was revealed to have collected at least 1/2 million bucks annually in testimonials, etc. I hope he gets a defective heart valve or pace-maker endorsed by a crooked cardiac colleague! (But insider knowledge surely protects them!)

That's a good example of your point. But clearly it is impossible to deny that these orthopedic surgeons save lives.

There is plenty wrong with the medical system. That, however, doesn't negate the proven treatments


On the other, the same wish to believe, obfuscates their ability to evaluate the benefits of various treatments. Scoliosis is in many ways an ideal "mine canary" since being architectural, at least at end- point, it is easier than most conditions to be studied in measurable units.

I agree with this.


Why single out the poor, chiro-businessmen?

Because they aren't qualified to be treating other human beings.


It's not simple. These chiros "just" want their tiny share of the pie of US Medical Care Corruption. The rest of the bakery has already been sold off full fee.


Read this...

http://www.sciencebasedmedicine.org/?p=59


Not condoning them, just putting them in context.

Quackery is the context for chiro. Science is the context for medicine. There is no overlap.

jrnyc
06-01-2010, 03:00 PM
hey rohr
please dont beat yourself up...when desperate, people can do all kinds of things they wouldnt do otherwise!

i dont worry about the meds...too much pain without them...the times i've quit, cold, that's all that's happened to me...just an incredible increase of back pain...no chills, no sweats, no shakes, nothing else...but that's just me...

as i said, it would be too painful without them, so for now, that is what i do...maybe in the future i will do something else...like surgery...but that is sure no guarantee i'd be free of pain!! i'm not pain free now...the meds take the edge off, so i can stop grinding my teeth...they certainly dont get rid of all the pain!

hope you feel better soon..

jess