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  • Results of Dr. visit

    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 .
    Last edited by dailystrength; 05-06-2010, 09:13 PM.
    34L at diagnosis; Boston Brace 1979
    Current: 50L, 28T

  • #2
    i am so glad that you received good news! hope you remain free of pain!

    jess

    Comment


    • #3
      then & now

      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
      Last edited by dailystrength; 05-06-2010, 10:02 PM.
      34L at diagnosis; Boston Brace 1979
      Current: 50L, 28T

      Comment


      • #4
        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!
        Amy
        58 yrs old, diagnosed at 31, never braced
        Measured T-64, L-65 in 2009
        Measured T-57, L-56 in 2010, different doc
        2 lumbar levels spondylolisthesis
        Exercising to correct

        Comment


        • #5
          Oh, Amy, I am so happy for you!! Let us both sleep well tonight.
          Last edited by dailystrength; 05-06-2010, 10:02 PM.
          34L at diagnosis; Boston Brace 1979
          Current: 50L, 28T

          Comment


          • #6
            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.
            Be happy!
            We don't know what tomorrow brings,
            but we are alive today!

            Comment


            • #7
              Good news from both of you! So happy for you that you're seeing results from your hard work.
              Glenda
              Age 66 Georgia (63 at time of surgery)
              Bi-lateral laminectomy 2006
              Kyphoscoliosis, approx 38* lumbar scoliosis, stenosis, disk herniations, lower back and hip pain, w/radiating pain, stinging and numbness in legs.
              A/P fusion (T10-S2) 5/17/10 and 5/20/10
              Dr Yoon, Emory Orthopaedic and Spine Hospital, Atlanta, GA
              Pleased with outcome

              Comment


              • #8
                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.
                34L at diagnosis; Boston Brace 1979
                Current: 50L, 28T

                Comment


                • #9
                  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
                  Not all diagnosed (still having tests and consults) but so far:
                  Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                  main curve L Cobb 60, compensating T curve ~ 30
                  Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                  Comment


                  • #10
                    What works

                    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
                    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/B00...ef=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.
                    Last edited by dailystrength; 05-11-2010, 08:32 AM.
                    34L at diagnosis; Boston Brace 1979
                    Current: 50L, 28T

                    Comment


                    • #11
                      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.

                      What do you project for yourself?
                      Not all diagnosed (still having tests and consults) but so far:
                      Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                      main curve L Cobb 60, compensating T curve ~ 30
                      Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                      Comment


                      • #12
                        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.
                        34L at diagnosis; Boston Brace 1979
                        Current: 50L, 28T

                        Comment


                        • #13
                          more

                          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!
                          34L at diagnosis; Boston Brace 1979
                          Current: 50L, 28T

                          Comment


                          • #14
                            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 :-)

                            Comment


                            • #15
                              Thanks!

                              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.
                              34L at diagnosis; Boston Brace 1979
                              Current: 50L, 28T

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