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Please Help -- From 16 degrees to 27 degrees in one year!

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  • Please Help -- From 16 degrees to 27 degrees in one year!

    I'm new to this forum and so glad I found it. I urgently need some advice from parents who have been through this!!!!!

    My daughter is 14. Last February (2007) she had her annual physical and the pediatrician did the "bend over" test on her for scoliosis. I was surprised that she said my daughter should be evaluated and x-rayed!

    So, we took her to the local hospital and had a scoliosis x-ray done. The results: 16 degree curvature. I don't have any further information other than that.

    The pediatrician told us that when my daughter got her period the scoliosis would stop progressing -- but we should do another x-ray in 6 months to follow up. The pediatrician was very casual about it.

    Just in case, we took her to our orthopedist. He also said she should be seen in 6 months to follow-up, and that the scoliosis would stop after she got her period. He said bracing is only done over 25 degrees. He was also very casual about it.

    Well, she got her period 3 months later. So we mistakenly thought that it was OK to postpone the next follow-up x-ray. We were busy and kept forgetting -- then it took a while for the pediatrician's office to send us the lab slip for the x-ray. One thing or another kept delaying it.

    Finally, earlier this week (14 months after the first x-ray) we did the follow up. I felt sick to my stomach when the pediatrician called me and told me that her curve is now 27 degrees. They faxed her results to the orthopedist. He doesn't even want to see her -- he referred us to Dr. Rinsky at nearby Stanford Univ. hospital (Palo Alto, CA). I understand that he's an excellent doctor for scoliosis (I'd love to hear from people who have seen him).

    My husband and I are now wracked with guilt that we waited so long to have the follow-up x-ray done. We are usually very good about that sort of stuff -- but both doctors were so damned casual about it that we mistakenly thought that since she had gotten her period it wouldn't progress any further and it would be OK to have the next x-ray done later than 6 months. Obviously that was a huge mistake in judgement. I just feel sick about it.

    We're seeing Dr. Rinsky on the 29th, but I'm extremely worried because I don't know how fast her curve is progressing. She is going through a growth spurt. On the phone yesterday the orthopedist said that curves often get worse during that time. I wish he had told me that last year!!! Why didn't he give me more information and tell me how important it was to x-ray again 6 months later?! Why were both doctors so freaking casual about it?! And why did they say that the scoliosis would stop after she got her period when that obviously WAS NOT the case?!

    I'm so angry at them for giving me mis-information, and I'm angry at myself for blindly believing them. And of course I'm scared for my daughter.

    The only thing I know about her 27 degree curve is that it is in the thoracic-lumbar area, which is apparently in the lower-to-mid back. I can't see it -- if they hadn't told me about it, I would never know it was there. My daughter is not in any pain or anything.

    I feel like I've been hit by a truck, I'm so devistated by this -- both by the tremendous guilt and by the realization that she will probably need a brace as she is just entering high school next Fall. We had to break the news to our daughter yesterday. She locked herself in her room and cried for over an hour (but she's feeling better about things today).

    How fast can a body brace be made? I'm worried that it may take weeks and her curve may get worse.

    I want to add that I have no idea what my daughter's Risser number is. My husband is 5'8" and I'm 5'3", so we know that our daugther will not be very tall. Right now she's about 5'0 or 5'1, so she's close to her adult height.

    Do you guys have suggestions for questions for Dr. Rinsky? I have a short list but since you guys are more experienced with scoliosis, I was hoping you could give me some guidance.

    Thank you so much!
    Last edited by NikkisMom; 04-18-2008, 03:50 PM.
    14-yr-old daughter recently DX'd with 30 degree thoracic curve. Night-time Charleston Brace started in May 2008.

  • #2
    Hi NikkismM,
    Welcome to the forum! You will get a lot of support from this group. I have only been on this forum about 8 months, since my daughter was diagonosed in October. I sort of know how you feel. My daughter's pediatrician mentioned she might have scoliosis last June when she had a camp physical. She was really calm and casual about it herself. She acted like it was no big deal. So, not wanting to freak out in front of my daughter, I didn't think too much about it either. The doctor told us to come back in a few months. I mentioned it to my husband and friends. Everyone thought this was really common and nothing to worry about. In September, I brought her back and was told that it was a lot worse. In two months?! Anyway, she was sent for x-rays and referred to an orthopedic surgeon. We found out her curves were 20 and 20. We were also told to wait 6 months before returning. Her curves increased to 24 and 24. Thankfully, the doctor suggested bracing (which she started 4 weeks ago).

    My daughter got her brace made in one week. Body cast first, then returned for trimming and adjustments. However, I have heard it can be done even faster depending on the orthotist. Find a great orthotist. That's important.

    It is good you will be seeing a scoliosis specialist at Stanford soon. Bring all the x-rays you have to this appointment. I have learned a scoliosis specialist reads the x-rays differently than a radiologist. Perhaps the numbers are not really as they appear. I am not sure if bracing is still suggested once mensus has started. Perhaps for a year or so. Many people think that Schroth physical therapy can do a lot to reduce the curves. This could be an option for your daughter. There are therapist trained in this area across the country.

    Try not to be too upset with yourself. The condition was not made clear enough to you by the original doctors. Anyway, at 16 degrees, doctors often do nothing but "wait and see". At least at 27, they should start doing something.

    Reading a lot (on this forum and in books) helped me to understand the options. I wish you the best for the upcoming appointment.

    ~Brenda
    Daughter 17.5 (diagnosed @ 12 yrs) in Sept 2007 AIS
    Oct 2007: T-20, L-20 [160 cm]
    Mar 2008: T-24, L-24 [163 cm], started Cheneau brace
    May 2008: T-16, L-7 (in-brace) [164.2 cm]
    Oct 2008: T-23, L-15 (out-of-brace) [167 cm]
    Feb 2009: T-20, L-18 (in-brace) 2nd brace
    Jun 2009: T-20, L-16 (in-brace) [172.2 cm]
    Dec 2009: T-33, L-16 (out-of-brace) [173.8 cm]
    Apr 2010: T-25, L-12 (in-brace) [175.3 cm] 3rd brace
    Mar 2011: T31, L20 (out) [176.2]
    Jul 2012: T31, L20 (out) [177.2]

    Comment


    • #3
      Thanks for your reply!

      We got in touch with Dr. Rinsky's office. His nurse is fantastic -- she spent about 10 minutes on the phone with us and gave us the names and numbers of the two orthotic labs they use. One of the labs usually can get the brace made in about a week.

      She also mentioned, like you said, that scoliosis doctors read the x-rays differently than radiologists. And she said that it's possible that at 27 degrees he may not suggest bracing yet with her situation. It all depends on the x-ray and his exam of her.

      I feel calmer now (I kept having dreams about back-related stuff last night and didn't sleep well...I'm a wreck today). I still feel awful about the situation, but I'm crossing my fingers that Dr. Rinsky will give us news that isn't too bad. However, I really don't know what to expect. I don't think I'll be able to relax until we see him. It's possible that his office may have an opening next week, and if they do then we'll jump on it!
      14-yr-old daughter recently DX'd with 30 degree thoracic curve. Night-time Charleston Brace started in May 2008.

      Comment


      • #4
        Hi welcome to the forum!

        Please try not to beat yourself up over your daughter's Scoliosis. We all do it to a certain degree and then it is time to move on and figure out what needs to be done.

        You will learn that what doctors say is what usually happens with Scoliosis. However, not every child falls into that situation--your daughter and mine. Jamie's Scoliosis did not stop progressing after she started her period. In fact, she wasn't diagnosed until about six months after she started her period.

        A few suggestions for you: make sure you are seeing a pediatric ortho. who specializes in Scoliosis, write down a lsit of questions that you and your daughter have and take that list to every appointment, list the questions in order of importance in case you don't get them all answered, ask what her Risser is, if possible, take someone with you to all appointments, they will throw a lot of information at you and it is easier if two adults are listening rather than just you, get at least a second opinion and lastly for now give your daughter as much involvement as she wants, let her be involved in asking questions and consider her thoughts/opinions in everything that happens.

        If your daughter is interested in talking to other kids with Scoliosis, there is a great forum similar to this one but it is mostly kids/teens. It is called SpineKids.

        Hang in there. You've come to a great place for information and support.

        Mary Lou
        Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

        Comment


        • #5
          MaryLou made some great suggestions. Definitely try to take someone else with you to all doctor appointments. I went alone (with my daughter) to the first awful visit. (We've changed the ped. ortho since then). I have insisted my husband atttend all ortho visits from now on. I take notes during every visit so that I have a record of what was said. Also ask for a copy of her medical records. I figure we are in this for years, so I keep this information in a binder. Now I can look back to what was said during specific conversations.

          Find out her height and weight. You want to track her growth to know when it is increasing or slowing down. (Obviously, the doctor will do this too). Ask about her Risser sign. You can determine this on the x-ray. Since she stated her period, she's probably at least 2. http://www0.sun.ac.za/ortho/webct-ortho/age/risser.html Take a camera and photograph the x-rays on the light screen. Try to get follow up visits about 3-4 months apart instead of 6 months. If she does need a brace, try to get it preapproved with your insurance company (i.e. is the orthotist an approved provider of your insurance). I did this all before the brace was made and we had no co-pay.

          My daughter has found Spinekids to be a tremendous support. http://www.spinekids.com/boards/ The kids are really great who write on this forum.
          Daughter 17.5 (diagnosed @ 12 yrs) in Sept 2007 AIS
          Oct 2007: T-20, L-20 [160 cm]
          Mar 2008: T-24, L-24 [163 cm], started Cheneau brace
          May 2008: T-16, L-7 (in-brace) [164.2 cm]
          Oct 2008: T-23, L-15 (out-of-brace) [167 cm]
          Feb 2009: T-20, L-18 (in-brace) 2nd brace
          Jun 2009: T-20, L-16 (in-brace) [172.2 cm]
          Dec 2009: T-33, L-16 (out-of-brace) [173.8 cm]
          Apr 2010: T-25, L-12 (in-brace) [175.3 cm] 3rd brace
          Mar 2011: T31, L20 (out) [176.2]
          Jul 2012: T31, L20 (out) [177.2]

          Comment


          • #6
            Try not to panic

            Hi, Nikki's Mom,

            Welcome to the group! This is a great place to start in your journey in learning more about your daughter's scoliosis. My daughter was diagnosed in January (she is only six), so I am well acquainted with your emotions-the shock, that sick feeling, crying unexpectedly, difficulty talking with anyone about the situation without crying, fear, uncertainty, not sleeping, etc. I am sure many of us parents have been exactly where you are. Try to take a deep breath, hang in there, and you should feel better as you gain more info.

            Please try not to beat yourself up too much about the delayed x-rays. What is important now is to go forward and find the very best care possible for your daughter. You are lucky to live in the SF Bay Area (we are from there but now in Oregon). There should be plenty of PEDIATRIC scoliosis specialists there. I agree with the recommendations above about finding a pediatric ortho who specializes in scoliosis, not just a general orthopedist. There are tons of resources on the internet. You might want to start with the Scoliosis Research Society www.srs.org --this site also has a physician search engine. There is also a good book, available at libraries, called 'The Scoliosis Sourcebook' that is packed with information.

            Also, in regards to the progression you mentioned. Our daughter's initial x-ray was read at 30 degrees by the local radiologist, then 26 degrees by the Shriner's pediatric scoliosis specialists, so try not to panic. Scoliosis is rarely an emergency. Mistakes are made in measuring x-rays when different vertebral levels are used for comparison, and when different physicians measure the x-rays.

            Good luck, it sounds like you are taking some very positive steps, and the appointment on the 29th should give you lots more info. Please let us know how it goes.

            Take care,

            Gayle
            Last edited by leahdragonfly; 04-19-2008, 10:54 AM. Reason: posted too quick
            Gayle, age 50
            Oct 2010 fusion T8-sacrum w/ pelvic fixation
            Feb 2012 lumbar revision for broken rods @ L2-3-4
            Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


            mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
            2010 VBS Dr Luhmann Shriners St Louis
            2017 curves stable/skeletely mature

            also mom of Torrey, 12 y/o son, 16* T, stable

            Comment


            • #7
              Thank you all so much for your replies, and the references to the websites and the books! I will be following up on all of that!

              I've seemed to be able to move on about the guilt somehow, but my husband is still having a really hard time with it. I've been in therapy for several months just to work on some personal issues and I emailed my therapist about what transpired. She emailed me back and echoed what you all have been saying. And coincidentally, she and all the women in her family have scoliosis! How weird is that!

              My husband and I will both be going to the appointment. I think we'll probably be going to all the appointments together. We both work from home so fortunately we have that flexibility. I will certainly make sure to write everything down.

              Well anyway, Dr. Rinsky is a pediatric spine specialist at Stanford -- which is one of the best hosptials in the entire San Franciso area. I did a google search on him and he is widely published and has been on their staff for 32 years. He's Chief of Pediatric Orthopaedic Surgery at the hospital, so I think we found the best doctor we see at this point.

              His nurse was wonderful to us on the phone yesterday. She suggested we try to call on certain days next week to see if there's an opening before the 29th. She took a lot of time on the phone to answer our questions and was very sweet.

              You are right about checking with insurance for pre-approvals. I will do that. But no matter what, I want to go with the orthotist that the doctor recommends. I don't want some second-rate orthotist that the insurance company approves of. From what I've read, it can be around $5,000 for a brace. I'd rather pay it out of my pocket and get the right thing ASAP than fight with Blue Shield about it. I have a very low opinion of insurance companies. Fortunately we have a PPO, so it's less restrictive. Nevertheless, I expect Blue Shield to give me grief at some point. It seems that no matter what insurance you have, they rake you over the coals, so now I just expect it (but that's a whole 'nother conversation..... )
              Last edited by NikkisMom; 04-19-2008, 12:52 PM.
              14-yr-old daughter recently DX'd with 30 degree thoracic curve. Night-time Charleston Brace started in May 2008.

              Comment


              • #8
                I really don't understand the complacence of the M.D.s, who for decades have not questioned their belief that the only treatments for scoliosis are 1) observation (as if that were a treatment), 2) brace, and 3) surgery.

                As Brenda mentioned, there is another option, Schroth physiotherapy, that in most cases arrests progression and can often reverse it, particularly with young patients and less severe cases like this one. There's a Schroth therapist in Palo Alto, though she's in Germany right now for advanced training till mid-May. See www.scoliosispt.net

                There are two orthotists on the West Coast who trained with Dr Manuel Rigo at his well-known Schroth clinic in Barcelona. They make the so-called Rigo-Cheneau brace:

                Grant Wood in San Mateo (gwood@hanger.com or 650-343-4504) and Gez Bowman in Reseda, just north of L.A. (Tel 818-317-3757)

                For background on Dr. Rigo, search PubMed on "Rigo M scoliosis" He is the current president of SOSORT, an organization of which Joe O'Brien (president of our forum's host the NSF) is a director: http://www.sosort.org/board.php I should add that although most of the directors are trained surgeons, the whole point of the organization is to research and promote non-surgical treatments for spinal deformities.

                You might PM swimmergirlsmom (check the Member's List) for her impressions, since her 14-year-old has recently gotten started with Schroth therapy and a brace by Gez Bowman.

                Good luck!
                Last edited by Writer; 04-19-2008, 03:40 PM.

                Comment


                • #9
                  Yes, a previous poster had mentioned Scroth therapy and I briefly googled it to see what it was about.

                  What's the difference between a non-Rigo brace and a Rigo-type brace? Can a child do Scroth ONLY with a Rigo-type brace? In other words, if I decide later to try Scroth, will I be wasting my money on a non-Rigo type of brace?

                  Also -- is Scroth considered a controversial therapy by most pediatric orthopedists, or do some open-minded docs support it? I'm not a person who blindly accepts everything doctors say (I've been through the mill on that with my own thyroid problem). But on the other hand, sometimes you wind up going down an unproductive and expensive road of an alternative therapy that doesn't really work. It can be very confusing. So I'd like to know the frank and honest truth about Scroth if possible.

                  I'd love to know more about Scroth and if it really could help reverse or help treat the curve in my daughter's back. I'm open to anything that would not be detrimental. Maybe I should start a separate thread about Scroth?
                  14-yr-old daughter recently DX'd with 30 degree thoracic curve. Night-time Charleston Brace started in May 2008.

                  Comment


                  • #10
                    I just did a web search on Hanger and realized that it is one of the places that Dr. Rinsky's office had recommended for getting the brace made (if my daughter needs a brace).

                    I am going to add "Scroth therapy" and "Rigo braces" to the list of things we're going to ask Dr. Rinsky.

                    I am so grateful to the people here at this forum. I'll be going into this appointment with a decent amount of knowledge and good questions.
                    14-yr-old daughter recently DX'd with 30 degree thoracic curve. Night-time Charleston Brace started in May 2008.

                    Comment


                    • #11
                      Nikkismom: Be sure to put an H in Schroth when you search. You'll find a lot of info on it on the web. The physiotherapist who directed the main Schroth clinic for decades has a personal website with lots of information:

                      http://www.schroth-skoliosebehandlung.de/

                      I'm not an expert on braces, but I do know that there is a considerable range of effectiveness, depending on type of brace and orthotist skill. If the brace does not correct posture sufficiently, it is not going to do much good. As I understand it, the brace needs to correct the curve by at least 50%. But do ask around of more people who have experience with braces, ideally those like swimmergirlsmom who're in a Schroth program.

                      The Rigo-Cheneau brace is stiff. Dr Rinsky may not know of Rigo yet (he will eventually), but he'll know the Cheneau brace. Some other types are soft (composed of straps).

                      I don't think that type of brace would be a factor in Schroth treatment. The decisive factor would more likely be whether the brace works as well as it should.

                      As for the orthopedist's or pediatrician's opinions, they are probably going to be skeptical, or even summarily dismissive, of physiotherapy as a treatment. They tend to think that it has very limited effectiveness, that's the party line in orthopedics.

                      But they have not carefully investigated the research studies pro and con. There is a very old (1941) study that tried general -- not targeted -- physical exercises for scoliosis and found that they didn't work. Of course they didn't work, they were not designed to address the specific problems of a scoliotic back. But this report started the myth among the doctors that exercises can't help scoliosis, and almost no doctor in the Anglo-American realm has ever questioned it.

                      The SRS and similar organizations have stated explicitly on their websites that there is no scientific foundation for claims that exercises work for scoliosis. But these people have not done their homework. The evidence for the Schroth method has been published in German since the 1920s and in English at least since 1991.

                      The book "Scoliosis and the Human Spine" by Martha Hawes (see it here on the NSF website's Store pages) is very enlightening. Hawes is a professor of plant physiology (U/Arizona) who has scoliosis and got a lot better with the help of an osteopath, though her orthopedist had insisted she have surgery. She combed through thousands of clinical research reports on scoliosis trying to find out why doctors believe that nothing but surgery helps scoliosis. She determined that there isn't any scientific evidence against exercise. It was simply bad research and the notion is propagated through the clinical literature without proper citations. She also determined that there *is* credible scientific evidence, in published studies, that exercise can be effective. Including Schroth. She dutifully cites chapter and verse for all the points she makes.

                      If I said this to an orthopedist I'm sure it would ruffle his feathers. But he has no credible defense. If you ask the doctor for specific citations of clinical literature that proves conclusively that physiotherapy cannot halt curve progression and at least partially reverse the pathology, he can't do it. It doesn't exist -- Hawes proved it. Ask him to show you the article and page if he protests.

                      Then show him the Hawes book (I have a copy you could borrow if you can't get it fast enough, I'm in Palo Alto) and some of the articles by Dr. Hans-Rudolf Weiss (current director of the German Schroth clinic) and others that document effective non-surgical treatment. I have a stack of them.

                      Sooner or later the orthopedists are going to have to admit there are other treatment options besides braces and surgery (and watching and doing nothing while it gets worse). The president of the SRS, Dr. Thompson, attended the SOSORT conference in Boston last year. An attendee told me that at the end Dr Thompson addressed the conference and said he had been "humbled" by what he had seen and heard about non-surgical therapies. I just now looked at the SRS website and I see that their page with the claim about exercise not working is no longer there -- they took it down. (I have a screen capture of the old page if anybody's interested.) Maybe Dr. Thompson's enlightenment will have an effect, though they are still focusing on surgery, their bread and butter.

                      Comment


                      • #12
                        Thank you for all that info, Writer. I'm slightly north on the Peninsula from you, near Belmont.

                        I totally understand the outlook of MD/surgeons versus alternative practicioners. I don't have scoliosis, but I've had back pain problems most of my adult life. The pain has come and gone. Last time it was gone for 2 years and then it came back with a vengence after a particularly stressful series of events. I had a terrible episode of chronic pain that lasted an entire year. I tried so many things, including Egoscue exercises at their clinic in San Jose. My orthopedist wanted to give me cortisone shots in my back, but I didn't want it. Fortuntely he never said I'd need surgery.

                        What finally took me out of pain was a combination of two things: treatment from a terrific osteopath in San Jose (Dr. Friedman), and reading the book "Healing Back Pain" by Dr. John Sarno. Sarno's method is extremely controversial but it has worked for me. I haven't had any significant back pain for months. I'm sure that I have what Sarno calls "TMS" because his description of the syndrome fits me to a tee. The osteopath supposedly corrected a few structural problems with my facia or whatever, and Sarno's method finished the job. I haven't needed to go back to the osteopath in months and I feel fine.

                        Same thing with my thyroid problem. It took me several years to find the right doctor that wasn't just going to look at lab result numbers, but see me as a whole person. There are a lot of endrocrinolgists that are operating on old data and old studies and don't know a thing about the new research that has emerged in the past 10 years. All the women in my family have thyroid problems, so I'm keeping an eye on both my daughters in that respect. My daughter with the scoliosis has recently complained about being cold and having dry skin -- two thyroid symptoms. So at her next checkup (in May) I'm having her thyroid hormone levels tested. Her pediatrician poo-pooed it, but I insisted.

                        Anyway, I know very well about how MD-surgeons feel about anything that doesn't require a pill or a surgical solution. But on the other hand, you have to be wary of quackery, too. It's a very confusing road to walk between medical doctors and alternative methods -- knowing who's right and who's either wrong or just wasting your time/money.

                        The Egoscue exercises helped me a great deal but didn't solve my problem. I don't feel that I wasted my time or money with them, however. Sometimes when my back feels tight from overdoing it, I do their stretches and exercises and I feel terrific afterwards. Their "airplane" exercises have also really helped my back feel good when I'm cramped on an airplane for many hours. So I think it was very beneficial, even if it wasn't the total answer to my problem.

                        If my daughter ever gets to the point where she may be facing surgery, I plan to investigate every other possible solution before anyone takes a knife to her. Once you alter the body surgically you can never go back. If it ever gets to that point, I want to be absolutely sure that it's the right course of action.
                        Last edited by NikkisMom; 04-20-2008, 02:23 PM.
                        14-yr-old daughter recently DX'd with 30 degree thoracic curve. Night-time Charleston Brace started in May 2008.

                        Comment


                        • #13
                          Hi Nikki's Mom
                          I totally know how you feel and my heart goes out to you, Nikki and your family, for all the emotions you are going through right now. My 14 year old daughter got diagnosed with scoliosis in Dec 2007, with a Thoracic curve of 48 degrees. After many hours of research, crying, meeting with doctors, and more research, we concluded that the best treatment for Lauren would be a cheneau brace and schroth therapy. The cheneau brace is a "correcting" brace, where as some other braces just "hold" the curve where it is. Since February, we have traveled up to Beatriz Torres in Palo Alto twice for Schroth physical therapy/exercise training and Lauren does these exercises for 30-40 minutes every evening. We are pleased with the results and would be happy to share more details with you, if you are interested.
                          Please feel free to send me a private message with your email address and I can send you more information, including pictures of Lauren's brace and examples of the exercises, so you can understand more about Schroth too.

                          Comment


                          • #14
                            We were able to get in to see Dr. Rinsky today. We were so grateful that they could work us in!

                            Basically here's the news.

                            Her first x-ray shows a 20 degree curve, not 16 as originally thought.

                            Her recent x-ray shows a 30 degree curve, not 27 as originally thought.

                            Any way you slice it, it's about 10 degrees in one year. I realize that there's a 3 to 4 degree difference either way depending on who's reading the x-ray. The curve apexes near T8.

                            Dr. Rinsky was very reassuring and I liked him a lot. He said that because her Risser is between 3 and 4 (it was hard for him to tell from the non-digital x-ray from the other hospital), and she is almost at her full height and has had her period for a year already, he does not recommend a daytime brace. He wrote a prescription for a nighttime Providence brace. We're going to get it done at Hanger.

                            He said that after the brace is made, we should come back for an x-ray to ensure that it's correcting the curve properly. This time we'll have it done at Stanford Hospital, which apparently has better x-ray equipment than Sequoia Hospital (digital versus non-digital).

                            After she has been in the brace for a few weeks, we will probably have a consultation with the Schroth therapist. The doctor didn't think that PT would help very much, but as long as he's OK with it, I think we'd like to try it. Our daughter isn't very athletic, so a little PT would be good for her, IMO.

                            The main points that gave me a great sense of relief were: he didn't think her curve would progress more than a few more degrees (although he said there are no guarantees). He didn't think she was heading toward needing surgery. And the scoliosis isn't impacting any vital organs. Also fortunately for her you can't really see the problem aesthetically unless you're looking for it (for her sake, I hope it stays that way).

                            This entire scenario is still a great shock to my family, but it's a relief that the prognosis is cautiously optimistic when you put it into perspective. As you can imagine, my daughter is happy that she'd only need to wear the brace at night. We will have to change our household routine to ensure that she gets as close to 10 hours per night in that braces as possible. She never gets to bed very early and she gets up at 6:30 a.m. That will have to change.

                            I'm crossing my fingers that the brace, some PT, and Mother Nature will all work in our daughter's favor. I know that there are no guarantees and I've read stories about kids getting worse no matter what and then needing surgery. But to keep my sanity, I have to be positive and hope for the best. No parent has a crystal ball for their kid -- although Lord knows we all wish we did.

                            Swimmergirlsmom - I haven't had a chance to look at the info you sent me but I plan to read it in the next few days. Thank you so much for sending it to me! This has been one of the hardest weeks I've had to deal with in a very long time.
                            Last edited by NikkisMom; 04-23-2008, 12:51 AM.
                            14-yr-old daughter recently DX'd with 30 degree thoracic curve. Night-time Charleston Brace started in May 2008.

                            Comment


                            • #15
                              Hi Nikki's Mom,

                              That's great news! I don't think you could have asked for a better report from the doctor and I'm very happy for your family.

                              As far as adjusting your daughter's schedule to get the 10 hours of brace wear per night in, I'm sure that after the initial adjustment period, she'll do just fine with it. Just keep reminding her that this way she can hopefully avoid surgery.

                              Sometimes with scoloisis, as with life, we have to make some little adjustments along the way

                              Best of luck to you!
                              mariaf305@yahoo.com
                              Mom to David, age 17, braced June 2000 to March 2004
                              Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                              https://www.facebook.com/groups/ScoliosisTethering/

                              http://pediatricspinefoundation.org/

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