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  • #76
    Ruth,

    When you describe your daughter, you could very well be talking about my Nicole. She is the most motivated, dedicated child when it comes to school, dance, organization, etc. She wore her Spinecor with a vengence and her daily motto was "I will not have surgery." She also feared shots, talk of blood, etc.

    Although she did everything right, she learned that so much in life is out of our control. Hence, the Serenity Prayer, which I told to her daily. She did everything right and needed surgery anyway. This beautiful child who used to cry as a baby because her hand got dirty or her shoe came off would surely not be able to handle surgery. But handle it she did. Sure, she drove the nurses crazy and they probably all quit the next day to become accountants or librarians.

    But I have been watching her with her teachers sitting at the dining room table, calculating math problems, learning Spanish, doing science experiments, and I am in awe of her. Everything she went through and now going back to her life, worrying about catching up and getting good grades. The human body is amazing. How quickly these children begin to recover. It is truly a miracle.
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

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    • #77
      you and nicole are an example and proof that there is hope regardless.............

      Comment


      • #78
        Ruth:

        I sent you a PM with my email, I could go into more detail about the program she was on because it was quite extensive. But in a nutshell, the Clear Institute protocal did include weighting, traction w/vibration and a whole series of exercises. The routine took 1.5 hours, 2x/day at home. We went to Minnesota to see Dr. Woggon for the one week of intensive therapy, we were basically there the whole day except for lunch. I did see some improvements on the before and after xrays, but quite obviously, that didn't hold. There was no one here in Houston doing this type of treatment at the time so we bought all the equipment necessary (it was very expensive too). We finally threw in the towel after 4 months, she had gotten worse in that time. I can't say she did the exercises 100% faithfully, but she gave it a fair shot. She was having to get up at 5:30 in the morning to get everything done and then repeat again in the evening, it was pretty hard. I had also considered the Schroth method but decided on Clear Institute because Schroth wants you to wear a hard brace in that program (obviously you don't have to though) and they pretty much say you will need to do exercises your whole life to maintain the scoliosis, but at least that's realistic.

        I'm glad someone's finally admitting that the correction won't hold, that was always our concern. It's difficult to do all that therapy day after day and not know if the results are even going to hold for one hour once you quit. Did they have any long term results to share with you? Did they say this would be a lifelong commitment or do they believe permanent reduction can be achieved and what evidence can they show you to prove this? I think those would be the most important things you need to know before you invest a lot of time and money. I don't necessarily regret the decisions we made, but knowing what I do now, I would not have put her through that.

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        • #79
          Thank you for the info. It is such a shame after all the effort and expense that your daughter's curves progressed anyway - you really tried hard to hold them back. I really hope everything goes smoothly with the surgery for your daughter. Your story is making me cautious and less optimistic as we proceed in deciding what is best for Esme. Your daughter's Pettibon routine sounds very similar to Esme's. Our chiropractor is so sincere it is hard to believe this won't work but your daughter is proof it probably doesn't......at least not for everyone...

          Dr. Horseman has a long power point presentation which he uses to train other chiropractors. We will be getting a copy of it tomorrow from our chiropractor - hopefully this will show some real results from the "revised" Pettibon treatment. It includes an analysis of the various braces - he showed this part to us briefly when we were in Peterborough. Will post again once we have watched this.

          Dr. Rivard did tell us the Spinecor had a 10-15% chance of working and really we don't have a lot of other options. I suppose Cheneau is an option but we'd have to know Esme will actually wear the brace before we fly off to Spain or something........!!

          I have a lot of regret that we did not receive proper advice when Esme's curves were below 20 degrees (or realize we needed to research more). We did not know her curves could get this large. We were misled by her brother having neurofibromatosis into thinking only children with a medical condition have progressive curves and went on to have surgery. Also, I have a lumbar scoliosis, discovered when my Mum was hemming a skirt for me, which has never progressed past the mid-20's. In hindsight we were so wrong but we really had no idea what could be coming. There is a lot of guilt with this which on one level I doubt I will ever get over - how could I have been so stupid not to have googled just a bit.

          I was dropping Esme off at a party last weekend and was chatting with the Mum about Esme's scoliosis. She casually mentioned that her nine year old daughter had a scoliosis. I asked if she was wearing a brace. The Mum said that the GP had said it was no big deal. I took a really deep breath then told her some of our story, advised her to ask for a referral to an orthopaedic surgeon right away and look at the Spinecor brace website. While I am no medical expert - I just couldn't keep quiet!! If only I had had someone to warn me it might have made a big difference.

          My daughter intends to write to the Mayor of Ottawa and the politicians to ask why there is no scoliosis screening in the schools here in Ottawa. I do a lot of community work and know the Mayor/local/provincial politicians so I can probably get her in to see them if she wishes too. I have already written to the provincial Minister of Health Promotion about the Spinecor being covered by the Ontario Health Insurance Plan (which it isn't right now - only TLSO) - a lot less expensive than surgery for the health system. So maybe we can become advocates for better information & treatment options for future scoliotics and some good will come of this...for now anyway it may be a good distraction and one way for Esme and I to feel better about this - trying to help others.
          Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

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          • #80
            Melissa:

            Thanks for your post. It is comforting to know that the children who have to have surgery get through it and recover relatively quickly. You must be so relieved to see Nicole resuming her usual activities like school work and shifting her focus back onto "good grades" again. I have followed your story closely, anxiously reading your posts to learn of Nicole's progress.

            While I can't admit to myself yet that Esme needs surgery, and I know if her curves get near 60 we are at the end of the road for alternatives, but in the meantime we feel we have to try something. I still can't quite wrap my head around even the thought of the surgery for her and often feel desperately upset even angry this is happening to her. After reading so many posts on this forum I sometimes think we are still in the "desperate to fix it" phase and feel kind of silly. I wonder if there is anyone out there who actually succeeded in holding back the curves that are around 50 degrees!!
            Last edited by rtremb; 10-07-2007, 11:23 PM.
            Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

            Comment


            • #81
              Ruth,
              I can totally relate to your experience. We discovered Sheena's scoliosis when it was 25L, we were told to watch and wait. I also never expected this to progress because I knew my sister and dad both had scoliosis but were living a perfectly normal life. Come to find out, their's is mild, it appears they have more of a problem with leg length difference which probably caused the scoli. By the time we went back at 6 month, she had progressed to 35 and we put her in a hard brace. That was a miserable experience, that's when I started looking for alternatives. We then tried the Spinecor but she was at 42L at that point. By the way, we never saw the doctor's in Montreal, I only spoke to Dr. Couillard on the phone and she told me a lumbar curve >40 is very stiff and may not respond well to bracing. I had to make a decision what was the best thing we could do at that point. For me, it was between Clear Institute, Schroth or going to Montreal and seeing if they could do anything else with the brace. I finally decided on Clear after I spoke to several people who had positive experiences with that. One guy said he completely reduced his curve, but it was <20. Anyways, you can see for us this was a very frustrating experience. It's especially difficult when you're so hopeful and then it doesn't work out.

              When her curve reached 60, that's when I gave in to the idea of surgery. I too was very much against it right from the start therefore made it much more difficult to accept for me and Sheena. It's probably in Esme's best interest to at least let her know this will be a possibility. We know this is the best thing we can do at this point but it still weighs very heavy on my mind. When she has surgery and I see she'll be ok, then I'll be able to breath.

              My experience with chiropractors is that they are very enthusiastic about what they do and convey a feeling of genuine interest, which may be true but be careful about their claims. The only chiro. who I felt was 100% honest with us was not one who regularly dealt with scoliosis but he had the Pneumex equipment and agreed to try. He said we should know within a month wether it was working , it didn't (he was very disappointed by the way).

              I think you have to do whatever feels right to you and is a decision you can live with, that's why I tried all these treatments despite the lack of evidence that it could help. You never know if it will work for your daughter unless you try. Take care,

              Comment


              • #82
                I have just returned from Woggon's Minnesota Clinic having gained phenomenal results!

                You wrote that you would be interested to hear from anyone who's been treated by Dr. Dennis Woggon...Well, here I am! Woggon is a highly skillful, extremely intelligent, excellent chiropractor who has dedicated his chiropractic practice to chiropractic leadership, education, advancement and research. I completed two weeks of intensive treatments with Dr. Woggon, Dr. Chong, and staff at the St. Cloud Chiropractic and Scoliosis Center in St. Cloud, Minnesota (March 30-April 10, 2009). I am now continuing Woggon's scoliosis treatments at home with exercises and his scoliosis traction chair twice daily...as well as chiropractic adjustments at my local chiropractor's clinic in Savannah, Georgia, (Dr. Mark Domanski and Dr. Michelle Fekete).
                Unfortunately, the pictures of the pre- and post- x-rays can't be attached here. However, I have attached an abridged summary report of my two weeks of intensive treatments for my severely deformed scoliosis spine. If you would like the full report, let me know. I will send to you a copy. Here is a portion of my report following the two intensive treatment weeks at Dr. Dennis Woggon's St. Cloud, MN, clinic along with my concluding comments:

                Pre- Post Treatment Findings

                After two weeks of intensive treatment at the St. Cloud Chiropractic and Scoliosis Center, on April 10, 2009, Rosemarie’s final x-rays and comprehensive assessments revealed the following:

                1) lateral cervical stress x-ray with 2# headweights and limited vision horizon glasses reveal a lordotic curve with 65% loss of curve indicating 11 pounds of apparent head weight with 0.1 inches of forward head posture, dysfunction of cervical vertebra C2,3,4 and 5.
                2) right cervicodorsal COB angle from T3 to T6 3 degrees;
                3) left thoracic COB angle from T7 to T10 27 degrees;
                4) right lumbodorsal COB angle T11 to L3 48 degrees.

                Rosemarie’s thoracic “hump” is visibly decreased; her pain is substantially lessened; and her optimism for a healthy remainder of her life is greatly increased. She will go back to work soon!

                Rosemarie's note...

                Fifty-five years after my scoliosis was diagnosed (at age 10), I left the St. Cloud Chiropractic and Scoliosis Center in St. Cloud, Minnesota with renewed strength and courage to continue my battle against the crippling effects of “idiopathic adolescent scoliosis,” having finally found help for my debilitating disorder/syndrome. No longer a candidate for surgery, I realize that the cost of Woggon's treatment is incidental compared to the benefit of a straighter, stronger, healthier spine for the remainder of my life (I am now 65 years old). I cannot sing the praises loud enough for Dr. Woggon, Dr. SuYen Chong, and the other St. Cloud Chiropractic Scoliosis Center staff—Margie, Ashley, Emily, Rachel, Dr. Mark Brenner. Let the dance begin! My back is soon to be (with diligent exercises, patience, and care)…..a normally curved spine. Who could have imagined such a miracle!...........Dr. Dennis Woggon, that’s who!

                If anyone reading this post would like more information about my experiences during the two week intensive scoliosis treatments at Woggon's Chiropractic and Scoliosis Center in St. Cloud, MN, let me know, and I will be happy to share.

                Here's to healthy, normally curved spines!

                Rosemarie
                rosemarie_stallworth@hotmail.com



                Originally posted by The Professor View Post
                I'm still a bit skeptical on Dr. Woggon's claims. Success in treating scoliosis via this method depends first and foremost on the "flexibility" of the curve. A curve that is very rigid and fixed (i.e., does not improve in the supine position versus AP or PA) is unlikely to respond to physical therapy OR chiropractic. Secondly, any improvement will require some type of maintenance. This goes for both physical therapy AND chiropractic manipulation. If you're familiar with the "vicious cycle" theory, this means that both of these techniques do help correct the "asymmetrical loading", but until the root cause is addressed or the asymmetrical loading totally reversed, the curvature will probably restart the cycle.

                I'd be interested to hear from anyone who's been treated by Dr. Woggon and if they have been able to maintain any correction.

                Comment


                • #83
                  I am curious what kind of exercises you have been prescribed. What is their goal, specifically?

                  While I am happy to hear that you've achieved some improvement with conservative means, I would like to fully understand the means. Woggon writes in one of his little papers that he conceives of scoliosis, and its treatment, as beginning in the cervical region.

                  The Schroth hypothesis, and treatment, are the opposite. The pelvis is misaligned, due often to problems in feet and legs. If all these are not addressed, the treatment is unlikely to be very effective for long since the pelvis is the foundation to which the spine is indirectly attached.

                  I don't know that these two concepts are reconcilable, but am willing to listen to solid explanations, and of course to see appropriate evidence.

                  Comment


                  • #84
                    More about my CLEAR experience with Dr. Woggon

                    You wrote....
                    QUESTION: I am curious what kind of exercises you have been prescribed. What is their goal, specifically? ANSWER: The exercises are based on each patient's x-rays and are specific for each individual. No two scoliosis spines are the same. The exercises are also ISOMETRIC rather than ISOTONIC. (Core muscles respond to isometric exercises.)
                    QUESTION: While I am happy to hear that you've achieved some improvement with conservative means, I would like to fully understand the means. Woggon writes in one of his little papers that he conceives of scoliosis, and its treatment, as beginning in the cervical region.
                    The major "righting reflex" to gravity is located in the head and neck.
                    The Schroth hypothesis, and treatment, are the opposite. The pelvis is misaligned, due often to problems in feet and legs. If all these are not addressed, the treatment is unlikely to be very effective for long since the pelvis is the foundation to which the spine is indirectly attached.
                    ANSWER: The pelvis is addressed with exercises, adjustments, blocking, and a sacral belt. The pelvis is not the foundation. If it were, we couldn't walk on uneven ground.
                    Appropriate evidence is available at the CLEAR CLINICS throughout the US. I hope this has been helpful.

                    Comment


                    • #85
                      Originally posted by Rosemarie View Post
                      Appropriate evidence is available at the CLEAR CLINICS throughout the US. I hope this has been helpful.
                      Writer, you've met your match, I believe ... ;-)
                      Fusion is NOT the end of the world.
                      AIDS Walk Houston 2008 5K @ 33 days post op!


                      41, dx'd JIS & Boston braced @ 10
                      Pre-op ±53°, Post-op < 20°
                      Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                      VIEW MY X-RAYS
                      EMAIL ME

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                      • #86
                        Originally posted by markymark View Post
                        Professor,

                        I One morning I came in and I said that my back hurt after I slept on my stomach. He told me not to sleep on my stomach. That seemed to help also. All I can say is that to date, my pain has improved, and my latest x-rays have improved. The improvement is noticeable when looking at the before and after x-rays. I don’t know if it will last, but I’m hopeful. It probably doesn’t work for everyone since we are all different. My chiropractor said to hope for continued gradual improvement of a few degrees over the next few months and that such an improvement is a little unusual for 6 weeks.
                        So you found a chiro with clearwater techniques in your area?

                        My daughter loves to sleep on her stomach...after her dx of scoloisis I rec laying on her back...and for first 30 minutes she has to lay on a rolled towel to correct her neck position...then she has a pillow under her knees....A PT rec right side sleeping too...I have no idea why...seems to help her back and pain level.
                        age 15
                        Daughter diagnosed at age 13
                        T20 l23 10-09
                        T27 L27 1/2010

                        T10 L 20 in brace 4/2010
                        T22 L25 12/2010 out of brace
                        T24 L25 7/2011 out of brace

                        Type 1 diabetes- pumping
                        Wearing a Boston brace and Schroth therapy
                        Faith, Hope, and Love- the greatest of these is Love

                        Comment


                        • #87
                          Originally posted by Rosemarie View Post
                          You wrote....
                          QUESTION: The exercises are also ISOMETRIC rather than ISOTONIC. (Core muscles respond to isometric exercises.)
                          What is isometic exercise...can you give an example? Vs isotonic? please explain

                          Originally posted by Rosemarie View Post
                          Woggon writes in one of his little papers that he conceives of scoliosis, and its treatment, as beginning in the cervical region.
                          The major "righting reflex" to gravity is located in the head and neck.
                          The Schroth hypothesis, and treatment, are the opposite. The pelvis is misaligned, due often to problems in feet and legs. If all these are not addressed, the treatment is unlikely to be very effective for long since the pelvis is the foundation to which the spine is indirectly attached.
                          ANSWER: The pelvis is addressed with exercises, adjustments, blocking, and a sacral belt. The pelvis is not the foundation. If it were, we couldn't walk on uneven ground.
                          Appropriate evidence is available at the CLEAR CLINICS throughout the US. I hope this has been helpful.
                          So what does it all mean? I am still very new to all this...is it the neck or the pelvis...because in dd situation we can see both out of alignment.

                          When I think of the spine..it is a very dynamic organ...it moves, twists, bends, with the person. I believe the muscles and posture do have impact on the spine. Although...just a thought what is scoliosis...is the spine fixed? Due to tight muscles, or bone deformity, uneven growth, or we really don't know what causes it

                          When I give my dd a back massage, I can feel tight areas and areas of weakness..this is something tangible and concrete because I can feel it myself.
                          Is it correctable in early stages with exercise? correcting imbalances of muscles and posture? Or is it what it is...and some improve others don't and its just a selected your scoliosis may vary kinda deal YSMV
                          age 15
                          Daughter diagnosed at age 13
                          T20 l23 10-09
                          T27 L27 1/2010

                          T10 L 20 in brace 4/2010
                          T22 L25 12/2010 out of brace
                          T24 L25 7/2011 out of brace

                          Type 1 diabetes- pumping
                          Wearing a Boston brace and Schroth therapy
                          Faith, Hope, and Love- the greatest of these is Love

                          Comment


                          • #88
                            My 55, oops, 56 year old scoliosis

                            Hello BigBlueFrog,

                            Based on understanding about the spine that I have learned (having cared for my scoliosis for 55 years), I will try to answer your questions.

                            You asked...is it the neck or the pelvis...because in dd situation we can see both out of alignment.

                            Answer: There are three normal curves in the spine. When the cervical curve (neck area curve) is not normally curved so as to balance the head on the spine, the other two spinal curves are "knocked" out of alignment. This usually throws out the alignment of the pelvis, as well.

                            You asked about the differences between use of isometric and isotonic exercises...

                            Isometric Exercises -- Def. A system of exercises using muscular contractions [I][I]against resistance in which the length of the muscles remains the same. Isometric exercises are used to strengthen and tone muscles, including the core muscles in the body. Example: Place hands together in front of your chest and push against each hand. Feel the force of the contraction as it strengthens the muscles in your arms, shoulders, and chest.

                            Isotonic Exercises --Def. A system of exercises using muscular contractions in which the muscle stays under relatively constant tension while changing length. Example: Lie on floor face down. Place palms on floor beside your body. Push your body up by raising your arms. (commonly referred to as "push-ups")

                            You asked...

                            what is scoliosis...is the spine fixed? Due to tight muscles, or bone deformity, uneven growth, or we really don't know what causes it

                            Answer:

                            Scoliosis: Def. Abnormal curvature of the spine.

                            The spine is not fixed. If it were, we wouldn't lose height as we grow older, or we wouldn't hump over as we age, or the spine could not be knocked out of alignment (as in a car accident or sports injury)...and then repaired with proper alignment. Muscle strength, bone deformity, uneven growth all do effect the health and alignment of the spine. Scoliosis seems directly related to the health and alignment of the newborn spine.

                            You asked...

                            Is it correctable in early stages with exercise? correcting imbalances of muscles and posture? Or is it what it is...and some improve others don't and its just a selected your scoliosis may vary kinda deal

                            Answer:

                            Scoliosis is correctable in early and late stages; however, amount of correction, obviously, depends on the severity of the scoliosis and the age at which corrective procedures and exercises are begun. Skillful massage therapists can work wonders with the health of the muscles surrounding the spine...to relax those contracting, painful muscles. All scoliosis sufferers can benefit from a regimen of systematic isometric exercises, specific chiropractic adjustments and traction therapies, regular massages by a trained massage therapist...and a lifestyle that includes all of the other things that promote good health--not overlooking the importance of belief that the spine will strengthen, heal, and straighten as such a lifestyle is practiced.

                            I hope I've been helpful to you. Keep looking for answers, Bigbluefrog...You will find them. But if you have scoliosis, find a CLEAR CLINIC near you and get started getting well.

                            Best to you and good health,
                            Rosemarie

                            Comment


                            • #89
                              Originally posted by Rosemarie
                              Appropriate evidence is available at the CLEAR CLINICS throughout the US. I hope this has been helpful.
                              Originally posted by txmarinemom View Post
                              Writer, you've met your match, I believe ... ;-)
                              I assume txmarinemom won the post of the month competition at that time for this post. If not it certainly should have.

                              It's interesting what constitutes "evidence" for some folks.
                              Sharon, mother of identical twin girls with scoliosis

                              No island of sanity.

                              Question: What do you call alternative medicine that works?
                              Answer: Medicine


                              "We are all African."

                              Comment


                              • #90
                                Originally posted by Rosemarie View Post

                                Scoliosis is correctable in early and late stages; however, amount of correction, obviously, depends on the severity of the scoliosis and the age at which corrective procedures and exercises are begun. Skillful massage therapists can work wonders with the health of the muscles surrounding the spine...to relax those contracting, painful muscles. All scoliosis sufferers can benefit from a regimen of systematic isometric exercises, specific chiropractic adjustments and traction therapies, regular massages by a trained massage therapist...and a lifestyle that includes all of the other things that promote good health--not overlooking the importance of belief that the spine will strengthen, heal, and straighten as such a lifestyle is practiced.
                                Rosemarie...

                                When you have published proof of this, please post it. Until then, I'll request that you limit your posts to only your own experience.

                                --Linda
                                Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                                ---------------------------------------------------------------------------------------------------------------------------------------------------
                                Surgery 2/10/93 A/P fusion T4-L3
                                Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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