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dailystrength
05-06-2010, 08:57 PM
Hi everyone. Well, I saw Dr. Shaffrey today and he walked in after examining the x-ray out back somewhere, and his first words were "good news". First words seem to tell it all. Last time it was "well, I wouldn't do surgery" - and that was at 49L. Today, a year later, a "Year of the Back" later --- drum roll - progress was documented. 49L is now 45L. Of course the disclaimer about morning vs. evening was given, and differing measurement from different doctors, but two measured, and my last x-ray was at the same time of day - 8 am. It has improved. The 34 thoracic has gone down a degree also.

The first Dr. who saw me this morning - the sit-down and "how are you doing" one, was... after I showed him all my books and told him all I had done in the last year - was impressed. He looked at my books and thanked me for bringing them in. He expressed amazement that I was off the Daypro. When I told him I was swing-dancing, he'd heard enough. He told me to write down what I've been doing, and submit it. He was going to refer me to Dr. Shaffrey's ongoing pain study.

So Dr. Shaffrey, after giving his prognosis, said he could see me in 2 years' time and then 5, barring any nerve issues and such that I may come in for, which would not necessarily mean surgery but be looked at. This is since too many x-rays are not ideal. But he agreed for me to be in his study, and now wants me back 18 months, to get on track with the others in it. I was overwhelmed with the good news and could barely listen, but my mother (previously a nurse) explained on our way out that he wants to use me as an example of positive outcome though exercise.

Having been all nerves while waiting for my x-ray, nearly in tears, I now feel very much confirmed that I am on the right track. I will continue to explore the Schroth treatment in June.

So, I could not have asked for more. Progress and the ability to potentially help others. I could barely focus at work the rest of the day. Thanks Jess, and Amy, for your interest, and all others. I'd put an x-ray photo up but I can't figure out how :).

jrnyc
05-06-2010, 09:25 PM
i am so glad that you received good news! hope you remain free of pain!

jess

dailystrength
05-06-2010, 09:43 PM
Thanks so much, Jess! Continued daily diligence is a must- pain creeps up but I am learning better how to keep it at bay. I avoid medication but do break down now & then. And then there are the massages - only $25 here at a school of massage in town. I am becoming a regular. I hope you can find some pain relief also, soon.
Here are my x-rays: first is 11/09 & 5/09; 2nd is May 2010

foofer
05-06-2010, 09:51 PM
Christina!

Just got back from a very long day in Boston, but a great one....

Bearing in mind that different doctors measure in different ways, and also that it was the exact same time of day, and also that there is a plus-or-minus 5 degree variance, my curves are back to measuring in the high 50's rather than 64t, 65L. So I will keep on doing what I've been doing and then some!

The doc here did not think I would benefit from surgery at this point and maybe not for a long while.

Woo Hoo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!

Gotta go- my poor 80 yr old mom drove me into Boston from NH and all around and back and we need to shut the lights and get some ZZZZzzzzzzzzzz's!

{{{{{{{{{Hugs}}}}}}}}} far and wide!

dailystrength
05-06-2010, 09:55 PM
Oh, Amy, I am so happy for you!! Let us both sleep well tonight.

rohrer01
05-07-2010, 04:03 AM
It sounds like you both had a GREAT day today! I looked at the book store for Curves Twists and Bends. She would have to charge me to order it, so I told her I could order it myself. I'm still going to look at another book store at the mall.

Dailystrength, I'm surely hoping that Schroth works for you. How can they say exercise doesn't work with results like that! Now I just have to find some that will target my very hard to reach, between the shoulder blades curve. ;) I would love to be pain free and get off the meds. I told hubby tonight that maybe I would just buck up and get myself off of them when they find out what is going on with my neck. I had an MRI and it wasn't good news as they cancelled my appt that day with the PA-C to reschedule me with a "real" doctor. But no one will tell me what they found. I will call my PCP next week and I'm sure he will tell me.

Congrats to you both!!! It's really nice to hear good news on here. :D

gmw
05-07-2010, 07:19 AM
Good news from both of you! So happy for you that you're seeing results from your hard work.:)

dailystrength
05-07-2010, 09:00 AM
Thanks, Rohrer and Glenda.

Rohrer, you can get the Curves, Twists, and Bends book at Amazon-- I got it for about $12 and shipping is free if your order is $25 or more. Yes, the associate Dr. seemed very interested in the book and asked if it had just come out. It did, this year I believe. I need to write and thank the author or at least give it a good review on Amazon.

Also, not knowing is very hard- I hope they can get you in soon. I only went off the med when I felt I didn't need it... it just sort of fell by the wayside. I have a memory foam pillow too from Penny's - not cheap but helpful. I think if your back gets better your neck will too - I hope. Be good to yourself.

Back-out
05-08-2010, 01:14 AM
So proud and happy for both of you, Christina and Amy!!!

Keep it up and be sure to let us know how it goes and what works for you.

Cheers (indeed)!

Amanda :)

dailystrength
05-10-2010, 08:57 PM
Thanks for all your encouraging responses. I look thru the surgical thread and think "that would be so easy" but I think there are pros and cons to each choice. At any rate, I'm doing OK now, so one day at a time.
I'm happy to write what works, as the neurosurgeon wanted me to write it up, also. So....

What I've done:
1. Phase I: Focused -Physical Therapy - first 8 mos.
Pilates-focused: work on abdominal & core strength to "get the two sides of my back to work together". Flexibility exercises included. Did 20 min. home regimen 5 or so times per week.
Later I had some more PT called "soft tissue manipulation" or something which worked wonders on my sore left shoulder. I learned some neck stretches and was able to purchase a TENS unit at a discount. That helped break up some of the stubborn knots.

2. Phase II: Varied but time-consuming: Gym - next 8 mos.
Yoga: worked nicely but read later in the Schroth material that some poses are not good for scoliosis.
Nia dance classes: fun but not sure how good for me.
Water aerobics: good class but tiring!
Belly dancing: once was enough - the teacher had scoliosis and said it's what keeps her out of pain, but I was too worn out to go back.
Weight training: under instruction from trainer- kept core intentionally stabilized, but again not sure again how good it was for me.
Alexander Technique: great class but my boss could not part with me for a weekly mid-day class :rolleyes:
Elyptical: always fine to use.
Swimming: enjoyed doing laps but read it could make unevenness worse. But only went once a week.
Stretching: always, after workouts.

3: Phase III: Easy does it - current program
Daily walk of 20 minutes at lunchtime outside on sloped drive.
Chair: sit on Giaim balance ball chair - this has worked wonders!!!
Book: Curves, Twists, & Bends: can't recommend this highly enough. Daily 10 or so minutes of stretches in morning and evening. Pain avoidance is a good motivator.
Swing Dancing: 1 or 2 night week. Fun without the feeling that you are holed up in the gym as it's more social.
Weekends: Hike or bike or walk if possible - an hour or two total for the weekend.
Massages: When needed! Relaxation massage is good, doesn't have to be deep.
Home Furniture: Purchased firm sofa, or get a board to make it firm. Also-- a Lafuma recliner - a wonderful reading chair! Highly recommended also.
Mattress: Memory foam topper and memory foam pillow. Topper: http://www.amazon.com/gp/product/B000A8BU1K/ref=oss_product
Photo: I keep a print of my x-ray in a 4x6 frame at my work desk. I have learned by examining it how to hold myself up more and not "collapse into the curve".
Lifting: only close to trunk, using leg strength! No helping others move furniture - "just say no". Notice pain. Move slowly, holding core steady. After a while it comes more natural.
Breathe! Sounds simple but it's not, as only we know. Breathe into the sunken side. "Curves" talks more about that. Breath all the way out on exhale.
Pain Mgmt: When needed: Daypro NSAID
Rest: as needed. It's okay to take care of yourself when needed, to take a break. We have a condition.
Stretch: a lot- during the day.

I can't tell exactly what helped the most; I think Phase I set the stage for Phase II, then III. The last seems to be working the best for me now. I will keep this updated.

Back-out
05-10-2010, 11:22 PM
Daily Strength,

You seem to have a really good program involving exercise rotation and social activity-exercise so maybe you will find this impossible to answer. I'm curious about how many hours/day you figure you are devoting to your exercise program (not counting on-going stategies like the balance ball chair and breathing "mindfully" - slightly different use of the term, but never mind)

I'm trying to return to my former fitness program which sustained me so long from curve progression. I'm quite flexible despite having lost height from some combination of disk shrinkage and increased deformity, and I can see the extreme pain is fast receding. (Hooray) I've gone back to fairly extreme floor exercises (gradually) starting last Oct. when my motivation was to get enough in shape to attend a HS reunion the "kids" (haha) were making a big deal about. It wasn't so much about my figure (a dead loss since shrinking four inches :() as about being well enough to make the trip.

Sadly, I couldn't manage it, largely due to lousy public transport from here to there, but the good thing is, it broke through my denial about the gravity of my spinal situation. That got me researching surgery and going again on exercise. It's not as strenuous as it was ten years ago when I was triathlete material (hard as that is to believe now) but much, much better both in stamina, core strength and pain relief.

I've recently added the treadmill back in (I had a nice one at home, gathering dust), so far only two miles a day at varying paces - fast and slow walks, no running or jogging. Later, I plan to bike. maybe swim, and do Pilates.

The problem is it's getting old fast! Also my day seems to revolve around it. Many of the things I used to enjoy seem out of reach now. For example, I miss running now that I can't (=shouldn't, because of high impact). That was fun, especially when I got up to 20 - 30 miles at a time, at least once/week. So were the extreme stretches I used to do - kind of in between gymnastics, yoga and cortortionist. Without these perks, it's getting....boring.

Although I think it MIGHT be possible to ward off surgery this way - at least for now - I wonder
a)whether I could keep it up (I'm 64) both from age and from boredom.
b) if I delay surgery now on this account, I'm closing lots of doors because of changes of insurance and commitments of recuperation assistance (which may not be forthcoming later on).

I'm sure you've thought of this too. That is, can exercise be a permanent solution or is there some "giving-out point"? Two hours a day of monotony is a lot and it's beginning to pall. I'm sure I can find ways to incorporate it into SOME more fun activities (I love to bike and even - haha - to belly dance, for all I can do it now with the lumbar arthritis) but I don't know. My options are fewer than they used to be. Wish I lived at the beach!

It was also more inspiring before when daily exercise (at least two hours/day then too - or more) got my body really buff. With the urgly lumbar kyphosis which has developed (which does NOT seem modifiable by exercise alone), there seems to be a definite ceiling on what I can achieve in getting back in shape - at least, to the naked eye.

Remembering the nursery rhyme about the old man who stood on his head every day to stay fit and wondering if that's really possible (not head-stands specifically, but indefinite exercise). Meanwhile, I'm getting older and maybe less fit for the surgery and recovery. Bone density not so hot either. I'm not Jack LaLanne - and for that matter, he doesn't have scoliosis.:rolleyes:

What do you project for yourself?

dailystrength
05-11-2010, 08:58 AM
Hi Back-Out, thanks for the thoughtful reply. I can only take a minute here since I'm at work but I wanted to point out, if it wasn't clear, that the first 2 "phases" have given way to the third phase, which is all I'm doing now. I do all my exercises at home except for the social dancing- the weekly lessons will end in 6 weeks and I'll go out once a week to a dance only. I got burned out on the gym, I have to admit. It was running my life and I had no time to myself. I have evenings now to do whatever, read or catch up on home things like bills & laundry, watch the news, fix dinner, see friends!

I plan to continue exercising at home - I need to clean out my spare bedroom and make it an exercise room where I can do the Schroth once I learn it. But still that will only take 30 min a day, which is longer than I'm doing now which is only about 20, just stretching on my living room floor. The 20 min walk is a lunch break from my desk so I don't really have to find time for that.

My one year contract with the gym is up in Sept so I may quit it- it is very expensive also. I hear you about insurance and surgery and that indeed is a consideration. Even Dr Shaffrey said some cases need surgery. I am not one to know that for you. Don't know where you are but he's excellent.

Really all I'm doing now is following the Curves, Twists, and Bends book - do get it if you can. She has a wonderful program and is so understanding as she lives with curves in the 60s herself and I believe she's in her 60s or so. I wish you the best, and will respond later to anything I neglected to answer.

dailystrength
05-15-2010, 11:36 AM
Hi again, Back-out,

I like your name in that besides the fact that your back is out, your trying to get back out there with the exercise! :)

In reading your post again at a more leisurely time I noticed a couple of things: yay for your pain beginning to subside!!! And I'm sorry you missed the reunion but like you said I'm glad for the new focus it brought to your situation. I'm impressed with your former athletic pursuits-- wow! That probably went a long way in preventing further deformity as you noted. About the kyphosis-- Schroth also addresses this I believe. You may want to look into that.

I know a big motivator for surgery is sometimes insurance coverage, but really this should not factor in- money vs. an irreversible surgery, in theory. In my worst moments I think "surgery" but on my good days I'm happy to be functioning fairly normally with a few more breaks than most people. But we all have our "crosses to bear". It could be a lot worse. I have been amazed at the results I've gotten. I am out of pain, have tons more energy (pain saps it!), and have lost some weight - hope to lose more!

Good for your for walking on the treadmill. Do get "Curves" and do some of her initial exercises - I have been stuck on the first 10 or so and I'm hooked, no further reading necessary. I feel I know how to stand better, and sit and sleep straighter. See if you can get the giaim balance ball chair - amazing.

My dream too is to have a beach house someday. About a life of exercise, I told my mother I'd be walking daily til I was 95... she pointed out that my grandfather, retired from the Army, kept up his walking and exercises daily until his last days. So it's not unreasonable. Variety helps as you said- I try to find a friend to exercise or walk with on weekends to take away that feeling that you're working at it. At lunchtime I walk alone often, but use the time to pray, so I don't feel alone in my thoughts.

Keep me posted!

mamamax
05-16-2010, 06:46 PM
Congratulations Christina! I've been following your posts and kept you in my thoughts ... your latest news is just the best. You've been a real inspiration to me and probably others as well ... go girl. Proud of you :-) Congrats to foofer as well. I'm weaning out of brace and using that book Christina - it's a good one. If others start using it and find it just as helpful, then we should write to Joe about offering it here at the NSF bookstore. I just finished a series of exercises in it after a back tensing day, and feel way much better! Grateful for your lead :-)

dailystrength
05-17-2010, 07:15 PM
Thank you so much, Mamamax! Your encouragement means a lot, on this rainy day in particular, when I could not wait to get home and sit on the couch! I'm hangin' in there, and so glad that you are finding the book helpful. Do keep us posted as to your progress in the brace. It only makes sense that, as it's been discovered that curves do progress in adulthood, that a brace would certainly be beneficial to adults as well as adolescents.

I start Schroth in a month; now I'm working on making room for the "stall bars" and my dad is looking into helping make them- so nice of him. I made plans to go to the beach Memorial Day weekend so it's a busy time!

Keep in touch.

rohrer01
05-18-2010, 01:07 AM
I'm still thinking about the book. I know there aren't any good exercises that can pinpoint my main curve because it's too high. That's why I didn't just run out and buy it. Most of you all have lower curves than me.

However, I have been thinking about what if I focus on my lower compensatory curve? I wonder if that would have an ill effect on my larger curve, or possibly have a positive effect on it. I'm not sure. All I know is that I've been on these strong meds for over two months now and I'm still in pain. I'm either sleeping from the drugs or in pain, or feeling downright sick, nauseas. I vowed that I would not let scoliosis run my life, but that is exactly what it is doing. So many successful people out there with curves larger than mine makes me wonder why I'm having such a hard time.

I guess I will wait and see what Dr. Hey has to say, that is IF I ever get my X-rays from UW.

I just keep hearing Dr. Tribus' words echoing through my head that I have a drug problem. He obviously doesn't know me very well. I'm about at my witts end and never even imagined EVER being accused of having a drug problem. Maybe he's never had chronic, sever pain, who knows. All I know is I want OFF these meds, especially the fentanyl and the klonopin, which, unfortunately seem to help the most. My hubby and I want a baby and these are two very dangerous and lethal drugs to an embryo, thus I'm forced to be on birth control.

What do you all think about focusing on the compensatory curve? It's only 28* and I think that is well within the limits to expect results. I think maybe just ignore the bad curve and see what happens. Worst case scenario, I progress. Well, I'm doing that anyway. At least I would feel like I'm doing something.

I have already started sort of an exercise plan. I walk between 1 and 2 miles a day in my "special shoes". Nothing is really targeted at the curves though. The problem is, if I stand with my shoulders level, I get this rotation that puts my belly button about an inch off center and creates a large rib hump out of the right side that actually pushes my arm away from my body. If I stand up "straight", my shoulders are extremely uneven, like my left one is about 2 inches higher than the right. So I don't know what is best.

Well I'm starting to ramble. Any input would be appreciated. Dailystrength, you certainly have coined a nice name for yourself!

dailystrength
05-18-2010, 10:42 AM
Dear Rohrer,

I understand ramblings; that's what we're here for! To me I would have never thought you had a drug problem. Those with drug problems can't function on a daily basis and you are very coherent--just in pain. He's probably seen others who really do have a drug problem. That's my take. :p

About focusing on the lumbar compensory curve, I think this could be helpful. I was reading in the Schroth book last evening that (they seem to think) scoliosis starts with an uneven pelvis. I've also heard it starts in the neck but anyway, not to confuse things, based on the uneven pelvis assumption, it would help your upper curve which could in itself be compensory. Therefore, the Curves book I think would help. At $12 it's not a huge investment, with free shipping if you buy $25 of things-- maybe your husband needs something from Amazon. The author Annette has both curves I believe, tho her lower is larger also, but the exercises are based on total body alignmnent. When I lay on the floor and do the "Windmill", you can tell how your upper body is supposed to fall into alignment. In fact this exercise moves my entire left shoulder back and down. I'm not an expert, but it does feel like that's where it's supposed to be, and it stretches out the sunken left side of my abdomen, also. She does incorporate Alexander Technique and I'm thinking this exercise is one of those - just for alignment, not of any particular area but for the body as a unit. The stretches really do help with pain but since your pain is so great you would need to start very slowly. I do hope that helps.

On another note I may be sticking with the book and what all else I can do, as I found out there are many loopholes to my insurance "coverage" for Schroth. Scoliosis treatment, other than surgery, really does need insurance recognition but that's another topic. I did get the good Dr's report faxed today which cheered me; I still can't believe my curve went from 49 to 44.

rohrer01
05-18-2010, 11:14 AM
Dear Rohrer,

I understand ramblings; that's what we're here for! To me I would have never thought you had a drug problem. Those with drug problems can't function on a daily basis and you are very coherent--just in pain. He's probably seen others who really do have a drug problem. That's my take. :p

About focusing on the lumbar compensory curve, I think this could be helpful. I was reading in the Schroth book last evening that (they seem to think) scoliosis starts with an uneven pelvis. I've also heard it starts in the neck but anyway, not to confuse things, based on the uneven pelvis assumption, it would help your upper curve which could in itself be compensory. Therefore, the Curves book I think would help. At $12 it's not a huge investment, with free shipping if you buy $25 of things-- maybe your husband needs something from Amazon. The author Annette has both curves I believe, tho her lower is larger also, but the exercises are based on total body alignmnent. When I lay on the floor and do the "Windmill", you can tell how your upper body is supposed to fall into alignment. In fact this exercise moves my entire left shoulder back and down. I'm not an expert, but it does feel like that's where it's supposed to be, and it stretches out the sunken left side of my abdomen, also. She does incorporate Alexander Technique and I'm thinking this exercise is one of those - just for alignment, not of any particular area but for the body as a unit. The stretches really do help with pain but since your pain is so great you would need to start very slowly. I do hope that helps.

On another note I may be sticking with the book and what all else I can do, as I found out there are many loopholes to my insurance "coverage" for Schroth. Scoliosis treatment, other than surgery, really does need insurance recognition but that's another topic. I did get the good Dr's report faxed today which cheered me; I still can't believe my curve went from 49 to 44.

Thanks for the advice. My lower curve isn't lumbar, though. It is also thoracic, and was barely existant when I was in my 20's. I think it was 16*. I can't be sure but it has been said on here that one of the main objectives of Schroth is to make the body appear even, which I do. One of the success stories "I can't remember which thread it was" actually the woman increased in curve size, but her body symmetry and appearance got better and that was her goal, strictly cosmetic. I know that wouldn't help me. Maybe for some people who do not have pain that would be a plus for them. I just don't know what to do. I probably will get the book and see if there are any exercises or stretches in there that I think might at least reduce the pain.

It's just my case is so unique. I have seen several scoli docs and only ONE has seen a curve pattern similar to mine. So there aren't many like me on here and the ones that I have seen have just about all been fused.
Thanks again! I really hope Schroth works out for you. You seem to be a very determined lady.;)

dailystrength
05-18-2010, 11:23 AM
Yes, Just determined to be out of pain and discomfort :)

rohrer01
05-18-2010, 11:29 AM
Yes, Just determined to be out of pain and discomfort :)

Me, too! I have some things that I've been mentally working on. I need to wait to hear from Dr. Hey and see what happens in that direction first.:p