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Dr. Woggon - Clear Institute treatment

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  • #46
    Sherie:

    Thank you for sharing your experience with the Clear Institute. Perhaps we are clutching at straws hoping for an improvement in Esme's curves but we are sooooooo reluctant to have the surgery - no going back once that is done. If we don't try the Clear Institute we will always wonder if it would have helped. We would be happy just to stabilize her curves until she has stopped growing. We are planning to go to Dr. Lawrence for the three week intensive program. Esme is very determined not to have the surgery so doing the exercises should be okay even if it is a long time each day - maybe put on some music she likes and try to make it fun! She will be seeing the chiro here in Ottawa three times a week too.

    We think we can get the Spinecor brace paid for by the Ontario Health Insurance Plan (which would be nice since we have already paid $2,800 for the night brace which didn't work for her because it was way too uncomfortable to sleep in). If she actually wears this brace it might do some good - better than nothing we think. We are close to Montreal so could go to Dr. Rivard for the fitting (my husband already spoke with him). Also there is a chiro in Gatineau, Quebec which is very close to us who has the computer equipment to do the fitting and would be able to do adjustments if needed.

    It is really good to have your comments on the Clear Institute and I will share them with my husband. It is good to be able to talk to another parent who is going through the same issues as us. Thank you.
    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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    • #47
      Sherie:

      We have a question - did Dr. Woggon's intensive treatment actually reduce your daughter's curves? We are thinking if the curves can be reduced we will use the Spinecor brace to hold the reduction in place.
      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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      • #48
        Rtremb

        Hi there. I also went to the clear institute this year in March. I understand your train of thought, as my attitude was also that if I did not try it I would always wonder later if it may have worked. My case is different because i am an adult so the likelyhood of a reduction is much less. I suppose it can't hurt to try. My only thoughts for you might be this. I think the chiro will tell you that you have had positive results and will show you an Xray demonstrating this. If I was you I would schedule an xray through the medical system as soon as you possibly can to verify the results given. The sooner the better. If you have reason to suspect that the positive results provided by the chiro were bogus, then you may not want to put your child through years of crazy treatment methods that have no validity. I am not saying they ARE invalid but it would make me a little suspect if I had exciting positive results of curve reduction from the chiro, only to have these results invalidated by an unbiased doctor the same day/week, however quickly you can get additional Xrays.
        I hope you can prove my theory wrong. I wish you success. All the best, Bish

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        • #49
          Rtremb:

          I totally understand how you feel, we know surgery is the last result, but here we are. I didn't want to put her through surgery only to later wonder if there was something else we could have done. Deciding on surgery has been the most difficult thing I've ever had to do because it will affect her life in some way forever.

          We did see some improvement in the thoracic region, it was clearly visible on the xrays, on the other hand, although he claimed a 20 deg. reduction in the lumbar curve, I couldn't tell at all by looking at the xray. I'm still very skeptical about that. Bish also pointed out something very interesting in another post, he said when he took his before and after xrays, he was told to hold his breath on one of them, to let it out on the other. Since I wasn't in the room at the time they took the xrays, I couldn't verify that with my daughter. The other problem was that there were no local chiro. that we could go to for the same therapy, so the home regimen is an abbreviated version of what they do in the office. They also didn't have any long term documented cases of permanent correction. From what I've read, temporary correction can be achieved by any number of ways, but holding that correction is where the problem lies. The 4 year time he gave me was a guess, he didn't really know himself, in fact, he was trying some new things out as we went and even said so. It's definitely not very scientific.

          One more thing I would like to point out, an out of brace xray that's taken minutes after they take off the brace isn't a true representation of the curves. My daughter was out of the brace for one week and had xrays taken before and after, there was a significant increase in her curves. Even though they appeared to be holding, that wasn't the case at all. I believe someone else on here said Dr. Couillard even said they had to be out of brace for one week in order to get the true numbers. If I had to do it all again, I would be more skeptical of everything I was told.

          Good luck with your decisions, I hope something works for your daughter.

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          • #50
            Sherie:

            Thanks for the information. We will make sure the x-rays are taken in the same way each time. So far the x-rays taken by our Ottawa chiropractor show beginning of treatment curves lower than the x-rays done at the Children's Hospital (Chiro: T45, L43, Hospital: T52, L48). We are waiting for the official radiology report from the hospital which is delayed since they made a mistake on the first report. Hopefully we will receive this next week.

            We are lucky I guess to have a chiropractor here in Ottawa who is able to follow-up on the intensive treatment. Esme will have to go to her three times a week and at $19.00 per treatment it is affordable for us. My daughter's chiro in Ottawa has scoliosis herself and has had her spine fused. She has had a lot of problems with her fusion and became a chiropractor to help others avoid the surgery. She is very committed to the Pettibon system and believes strongly she can help. She has helped some other teenagers here in Ottawa to avoid surgery so we feel pretty good about working with her. She has all the equipment in her office (wobble chair, traction units, special massage beds, etc.) and we have some equipment at home too now.
            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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            • #51
              Bish:
              I have read a lot of your previous posts and we are feeling very unsure about taking our daughter to Minnesota to see Dr. Lawrence. It seems from your posts and those of others on this forum that the treatments don't work. This will be very expensive for us to go ($8 - 10,000) and while we would pay anything to fix our daughter's back (or even hold it where it is) we are very concerned about being taken by anyone who would take advantage of us in our current fragile state. We are interested in your opinion (and others on this forum) as to whether this Clear Institute is worth pursuing or not.

              Since doing nothing is not an option we will definitely get a Spinecor brace for our daughter - she has not tolerated the hard braces at all so far.
              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


              • #52
                Hi Rtremb

                It's good that you have local support and the price if very reasonable. It sounds like your chiro. has very honorable intentions too, at least you feel like she willl be understanding and is not just after your money. I hope you'll keep us posted, maybe others can benefit from your experience. Let me know if you have any other questions about the treatment.

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                • #53
                  You did a right thing

                  As a mother, I understand and fully support what you did. By reading many posts from different patients, I feel that everyone's body is different and react differently even to the same treatment. I guess it is because the cause is different.

                  I will encourage my daughter to try some non-surgical treatments. She is not 12 and still growing. We have consulted several surgeons and only one said surgery within next 3 months. Other said, 50 or 70 degrees does not make too much difference to the outcome of the surgery. So we are going to give non-surgical a try.

                  One thing bothers me about the surgery is, all surgeons told us that, no implications, minimum... I found it is hard to believe. With 2 steel rods in your back, no problem for the rest of your life? or the next 20 yrs - my duaghter wil only be 31 then!
                  Mother to Sophie, DOB 10/8/95; diagnosed 45T/31L July 07, 54T/39L Aug 07; Rigo-Cheneau brace & Schroth, Tamars, Rolfing; 54T/36L Dec 07; 51T/34L Apr 08.

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                  • #54
                    Clarexp,

                    Dr. Lenke told us right off the bat that this will NOT be my daughter's last surgery. He mostly deals with revision surgeries so he's speaking from experience. He said there will be wear and tear on the remaining unfused areas, what he can't predict is when this will occur. It may be 10 years or 40 years, hopefully with the advances in surgery technique, it will be many, many years from now. My daughter would have a very uncomfortable life if she didn't have surgery so this is our best shot. We were also told there would not be a big difference in the outcome even if her lumbar curve progressed to 70.

                    As far as alternative treatments, a surgeon will not advocate it because none of them are scientifically proven to help. Our first dr didn't discourage us though, his thoughts were it couldn't hurt. He also monitored my daughter in the Spinecor brace, which ultimately didn't work. We tried the Clear Institute, went to Dr. Woggon himself, (you can read my earlier posts on this thread) and we tried pneumex therapy, also no luck. I would just advise you to approach any treatment cautiously, and ask many questions, especially when can you expect to see some improvement and if there isn't improvement by that time, you will need to decide if it's worth continuing or not. It was very frustrating for us to spend all that time, effort and money only to be disappointed over and over again.

                    I hope you have some success to share with us in the future, you really don't know for sure until you've tried.

                    Comment


                    • #55
                      Sherie,

                      My daughter is not in pain and she looks normal with clothes on. Her deformation is minimal I guess it is because it developed in a very short period of time. She just had her breathing test, reading was 29 compare to average of 21.

                      She was fitted with RIGO-CHENEAU brace 2 weeks ago in VA and now we are in WI learning Schroth method which will help her back muscle while wearing brace.

                      I read the story on http://members.cox.net/myspine/MYSTORY.htm; then decided to give it a try.

                      I will post the result in 3-4 months time when we know.
                      Mother to Sophie, DOB 10/8/95; diagnosed 45T/31L July 07, 54T/39L Aug 07; Rigo-Cheneau brace & Schroth, Tamars, Rolfing; 54T/36L Dec 07; 51T/34L Apr 08.

                      Comment


                      • #56
                        Hi Sherie...

                        I don't understand this. No where near 100% of scoliosis surgery patients require revision surgery. I would definitely question him about this statement before agreeing to surgery. I hope, if you understood him correctly, that he was just saying it to prepare you in case she does need revision.

                        Regards,
                        Linda

                        Originally posted by Sherie
                        Clarexp,

                        Dr. Lenke told us right off the bat that this will NOT be my daughter's last surgery. He mostly deals with revision surgeries so he's speaking from experience. He said there will be wear and tear on the remaining unfused areas, what he can't predict is when this will occur. It may be 10 years or 40 years, hopefully with the advances in surgery technique, it will be many, many years from now. My daughter would have a very uncomfortable life if she didn't have surgery so this is our best shot. We were also told there would not be a big difference in the outcome even if her lumbar curve progressed to 70.

                        As far as alternative treatments, a surgeon will not advocate it because none of them are scientifically proven to help. Our first dr didn't discourage us though, his thoughts were it couldn't hurt. He also monitored my daughter in the Spinecor brace, which ultimately didn't work. We tried the Clear Institute, went to Dr. Woggon himself, (you can read my earlier posts on this thread) and we tried pneumex therapy, also no luck. I would just advise you to approach any treatment cautiously, and ask many questions, especially when can you expect to see some improvement and if there isn't improvement by that time, you will need to decide if it's worth continuing or not. It was very frustrating for us to spend all that time, effort and money only to be disappointed over and over again.

                        I hope you have some success to share with us in the future, you really don't know for sure until you've tried.
                        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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                        • #57
                          Linda is right - the vast majority of scoliosis patients have their surgery, recover, and then go on living their lives. There are plenty of patients who had surgery 30+ years ago who have never needed revision surgery. The adults with problems that turn up on sites like this one represent just the tiny fraction who do require revision surgery, and most of those are because they have specific problems to do with the Harrington Rod, which is now obsolete.

                          If all of your surgeon's patients eventually require revision surgery then I would question his effectiveness as a scoliosis specialist!

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                          • #58
                            Linda and Toni:

                            I hope you're right, the last thing I want is for my daughter to require surgery ever again. What I know of Dr. Lenke is he's highly regarded amongst his peers (we saw 4 doctors and I asked), performs about 250 surgeries yearly, goes to many seminars to teach other surgeons pedicle screw placement and is heavily involved in research. The rate of complications at his facility also seems quite low at 3.5% so I don't think he means any time in the immediate future.

                            Am I wrong in saying that the most common type of scoliosis is thoracic? In those cases wouldn't the fusion be much shorter and wouldn't involve the lumbar vertebrae? It seems to me that these patients recover more quickly and have fewer limitations from the lack of flexibility. Maybe my daughter's case is such that he thinks revision surgery is very probable, her lumbar curve involves L5 but I don't think any doctor would want to fuse that low in an adolescent.

                            I guess the point is you have to look at every case individually and not apply what one doctor says to any other patient. What Dr. Lenke told us may be very specific to her but I do trust he has the experience to know what he's talking about. I appreciate what you're saying and it's good to know that there are many out there who are doing fine after so many years.

                            Comment


                            • #59
                              My husband asked the surgeon at Shriner's if he thought she would need another surgery in the future and he said it would be unlikely. Then again, he said he thought her rapid curve progression was behind us and she has been increasing rapidly.

                              Our surgeon at CHOP said that the most important goal of this surgery is "DO it right. Do it once. " That was not his exact quote, but it was something to the effect of "we only want to have to do this one time."
                              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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                              • #60
                                From what I've read on this forum, Dr. Lenke seems to be an excellent surgeon who does both 1st & revision surgeries frequently. Maybe his view of future surgeries reflects the fact that he does so many revisions. The newer instrumentation hasn't been around long enough for many revisions to have occurred with it except in unusual situations.

                                I asked most, if not all of the surgeons we interviewed if they thought Alexander would need another surgery after this one & they all said this should be the 1st & last surgery for him. I asked the surgeon we chose, who fused two fewer thoracic vertebrae than his original intent & one fewer lumbar vertebrae than our other main choice if he was sure stopping at L3 would still prevent another surgery & he said yes. He does several spinal surgeries a week, as far as I can tell, & has been doing them for many, many years and I trust his judgment. I know every patient is different though & this is such a difficult surgery to choose (?) to undergo for both the patient & the family. We tried so many different alternative treatments before the surgery from TLSO bracing to different types of bodywork, acupuncture, etc. But Alexander's curve was congenital & most/all of the practitioners, I now realize, didn't fully understand the implications of that with their treatments.

                                Good luck with what you are doing Claire. I really hope it works & since it sounds like your daughter may have idiopathic scoliosis, maybe it really can work.
                                Sherie & Melissa, please let me know if I can help you with any information or support before or after your daughters' surgeries.
                                Laurie

                                Mother of Alexander & Zachary:
                                Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
                                Zach is 13 years old and very energetic.

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