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  • Lost in a field of Information

    There is so much to know about scoliosis and I find that I feel completely overwhelmed. Kelsey (13 this coming December) first made me aware there was a problem this past July. Her chief complaint was that her bra straps "never" stayed up. I thought I was dealing with a silly 12 year old and asked her to please come let me fix them.

    I adjusted the straps and noticed that her bra did not run straight across her back. Yes! I was truly not comprehending what I saw. I actually asked her if it was straight in the front and she told me it was. Thats when I had her remove her shirt completely so I could get a look at her back. She has dressed in her room behind closed doors for over a year so I had not noticed the change.

    When the shirt came off, you would think that I would have recognized what I was looking at! But, it took me a couple of days and talks with my sister for me to realize what I was dealing with. Now, the small things we had noticed in the last year began to make sense. Why was her ribcage so uneven? "Mom," she said at one point, "Why are your arms so short compared to mine?" (They aren't by the way when you factor in the fact that she shouldn't be shorter than me.) Why her back hurt. Why her chest hurt. etc....

    At any rate, I called and got an appointment for the first Friday in August. After looking at my daughter's back the doc said, "I want her braced immediately." But, after finding out she had started her period nearly 2 years ago he wanted to x-ray to see if she was still growing. Because, if I understood correctly, he felt that if she had completed her growing it would do no good to brace her.

    X-rays followed (August 10) but it would be 2 more months before we would be able to see him. Nine long weeks. The x-rays revealed a significant (58 degree) curve. And, no I don't know the medical jargon to explain it. It is an S-curve and the compensatory curve is such that she appears balanced when viewed from the front. Which, I guess is why I did not catch on to what was happening sooner. The protrusion of her shoulder blade I thought was due to the manner in which she stood, etc. There are hundreds of things I can think back on and wonder about why I didn't notice sooner. But, they won't change the present.

    We have been recommended for surgery. And now we wait for that process to begin. Any advice would be greatly appreciated. I'm completely lost as to what to expect or how to help Kels through the anxiety. We tell her to trust the doctors and we'll get through it one day at a time.

  • #2
    Hi Kelsey'sMom,

    Sorry to hear about your daughter's diagnosis. That must be a shock to be headed straight for surgery. I do not have any experience with the surgery aspect of scoliosis but many here have helped their children through the experience with great success--both physical and emotional--and I am sure they will have good advice for you.

    Try not to be too hard on yourself for not identifying your daughter's curve yourself. I'm guessing that most of us don't. I sure didn't even though it was so obvious to me once the pediatrician showed me.

    Good luck to you and your daughter.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

    Comment


    • #3
      Hi Kelsey's Mom. Welcome to the forum.

      First please try to stop beating yourself up. It is normal and we've all done it, but you don't need to struggle with that right now. My 18 y.o. daughter was diagnosed with a Scoli curve of about 36* and a Kyphosis (front to back curve) of about 79* at her 12 y.o. check up and yet I never suspected Scoliosis and I certainly never heard the word Kyphosis. What I found frustrating, is the fact that no one ever tells us parents what to look for as far as signs of Scoliosis. Like you, after the diagnosis, I saw a ton of symptoms! For example, Jamie's shoulders were very rounded and my husband would stand behind her and tell her "shoulders back, chest out" and she'd reply "I can't." Obvious sign of Kyphosis when you know what to look for. The waist band of her shorts was crooked. Her shoulders and her bra were uneven, but like your daughter, she dressed and undressed behind closed doors so I never noticed. You're right--looking back won't change the present and you need to focus on the present and the future.

      Believe it or not, you will find the strength to get Kelsey through this. Be honest with her and keep her as involved in the whole process as possible. I found Jamie liked to be invovled and that way it wasn't her dad and I making her have the surgery. It was an educated decision that she made for herself with our support and guidance. Let Kelsey help decide when to have the surgery, for example.

      At this point, I would suggest a few things: 1) get at least a second opinion; 2) make sure she is being treated by a pediatric orthopedic surgeon who specializes in Scoliosis; and 3) write down a list of questions to take to doctor's appointments with you.

      You have found a great group on this forum. You'll learn tons of information and get a lot of support. Feel free to ask any questions you have.

      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


      • #4
        Hi Kelseys Mom,
        I thought i was reading my own post when i read yours.
        We discovered Gabbys curve on her 14th birthday in Feb.
        Everything you are feeling is very normal.
        You will go through all the stages of grieving. Until you are finally at acceptance. This has been a terrible time for you but you have come to the right place. this forum was a life saver for me. I gained so much information and peace of mind that i was doing the right thing. Gabby will be operated on on the 1st Dec. Just start researing as much as you can for the right paediatric orthopaedic surgeon specialising in scoliosis in your area or somewhere that you are prepared to travel to. Then go straight to this forum and ask if anyone has any info about them.
        I guarantee you will get through this with the help and advice of so many wonderful people on this forum.
        I know that once you are at the stage of acceptance and are ready to take the next step towards treatment, you too will be advising and helping another mother that has just discovered her daughter has scoliosis.
        Take a deep breath and know we will all help as much as we can with compassion and advice.
        God Bless you and your family
        Donna
        Mother to 14 year old daughter, Gabrielle (Gabby).
        Discovered her scoliosis on her 14th Birthday in February 2009. Due to be operated on for curves of 57 and 54 degrees (S Curve) in December 2009 with Dr. Askin in Brisbane.

        Comment


        • #5
          Thanks for the support and suggestions.

          I guess I didn't explain that very well at all. The doctor was a Pediatric Orthopedic surgeon. I skipped straight to him via the local health clinic where he volunteers once a month. That's why the second appointment was so far after the first. A medical emergency of his own prevented him coming in September and we had to wait until October to see him.

          He offered to make recommendations for a surgeon (because he flies in from out of town where his practice is located). We began to try to find a surgeon (none in our town) and were lucky enough to be contacted by the Shriner's. They will, I'm certain, run their own x-rays and give their own suggestions. We should, hopefully, hear from them in the next 3-4 weeks.

          (Note: He also said he would be glad to treat her if we chose. But, that he felt that the distance might be an additional hindrance to us.)

          The first doc recommended that we not wait more than a few months. When I asked if we could wait until summer to schedule, he said that would be up to us, but would require that she be seen regularly to make sure her spine doesn't do anything "unexpected". The whole thing has been unexpected! But, of course, I know he means that would endanger the spinal cord.

          About the questions. I am not even sure what kinds of questions to ask. I'm so used to just soaking up whatever info I'm given. I do have a notebook and will try to write anything that comes to mind down. Any suggestions here?

          Comment


          • #6
            We missed our son's entirely, too. The only thing that clued us in was that he was walking with his head very far forward, and complaining of odd pains. But he was about 37 degrees before we noticed that.

            I'm sure other people will have suggestions for questions, but one I might ask is "Is there any time pressure to have the surgery immediately." If she's fully grown and there's no other underlying condition, she should progress very slowly from here on out. My son hit 57 degrees, but has held there for 3 or 4 years now. We assume he'll hit the magic 60 degree mark, or have pain, at some point. But, until then, we're exploring alternate paths.

            Again, there may be other reasons to rush the surgery, but it would be worthwhile to find out their estimate of the chance for her progression.

            One thing we learned (a little later then I'd have wished!) is that orthopedics is a very broad field. The doctor who diagnosed our son mainly works on club feet. That mean that, although he's a well-respected orthopedic surgeon, he doesn't have enough depth of experience in scoliosis. We're glad that our son's curve held long enough for us to find a doctor on the Scoliosis Research Society list, and we're also glad that it held long enough that he can make a decison as an adult (he's 21 now).

            The good news in all of this is that, if she does need surgery, kids with scoliosis do great and bounce back very quickly.

            Comment


            • #7
              My daughter had a scoliosis screening by a school nurse 2 months before her pediatrician noticed her 38 degree curve.

              The school nurse totally missed it.
              (As did my wife and I - I can forgive myself for not noticing, but I am troubled the (suposedly) trained nurse missed it and that is exactly what she was looking for).

              From your post, it sounds like you are in good hands. Shriners has an excellent reputation and the other orthopedic doctor you saw sounds informed about scoliosis (he wins points from me for assessing skeletal maturity and not just basing his recommendation on age).

              Comment


              • #8
                Originally posted by Kelsey's Mom View Post

                About the questions. I am not even sure what kinds of questions to ask. I'm so used to just soaking up whatever info I'm given. I do have a notebook and will try to write anything that comes to mind down. Any suggestions here?

                It sounds like you are on the right path. Shriner's Hospitals are awesome and have some of the best doctors in the world.

                As for questions to ask, ask whatever comes to mind for both you and Kelsey. Writing them down as you think of them helps. I would probably want to know how far he plans to fuse Kelsey. Maybe how long he expects the surgery to last. How long will the hospital stay be. What restrictions she'll have after surgery and for how long. Ask Kelsey what she wants to know. Ask the surgeon for names/phone numbers of people who have had similar surgeries done by him and call them if you feel the need. I am a strong believer in being as prepared as possible before surgery. Try to put your questions in order of the most important as you might not have enough time to ask all your questions at one visit. Some questions can possibly wait until the pre-op, for example.

                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


                • #9
                  I echo what the others have said. My dd wasn't officially diagnosed until a little over a year ago and by then her left thoracic curve was 55 degrees. B/c it was set up a bit higher and she wore looser clothing, it went unnoticed.

                  My dd had her surgery 7 weeks ago (her curve had progressed to 60 degrees) and is doing great.

                  You *will* get through this, and you will be the best advocate there is for your child.

                  This forum has great advice and support. Welcome!

                  Marian

                  Comment


                  • #10
                    My sister at 13 went to our family doctor and asked why she curved in more on one side of her waist than the other. The doctor told her that was normal and she just would never be a model. A few years later and a different city, I was diagnosed with scoliosis and had to have surgery. My sister came to visit (she lived in a different city) and my doctor checked her and said she also had scoliosis. My daughter was checked by the school nurse in 8th grade and by me (I had been trained to screen by my doctor) the same day. She had no visible curve. One month later, I noticed she had a curve. I took her to the doctor and it was 38 degrees. We started watch and wait. At her check up the next year it was 45 and we scheduled surgery for right when school got out 6 weeks later. Her pre-op xrays showed it was up to 48 degrees.
                    Moral of the story - curves can progress quickly and not everyone - doctors included - can detect scoliosis!
                    T12- L5 fusion 1975 - Rochester, NY
                    2002 removal of bottom of rod and extra fusion
                    3/1/11 C5-C6 disc replacement
                    Daughter - T7 - L3 fusion 2004

                    Comment


                    • #11
                      Hi Kelseys' Mum,
                      Welcome to the forum. You have come to the right place for information and support. The mums on this forum are awesome, I take my hat off to them. Don't worry too much about the curve not being picked up earlier, the main thing is to deal with the present and move forward. Good Luck!
                      Vali
                      44 years young! now 45
                      Surgery - June 1st, 2009
                      Dr David Hall - Adelaide Spine Clinic
                      St. Andrews Hospital, Adelaide, South Australia
                      Pre-op curve - 58 degree lumbar
                      Post -op - 5 degrees
                      T11 - S1 Posterior
                      L4/5 - L5/S1 Anterior Fusion

                      Comment


                      • #12
                        Kelsy's mom, welcome.

                        Sorry about your daughter's diagnoses. Don't be hard on yourself, your not alone and I have read that Shriners is a top notch facility with one of the best spinal surgeons in the world.. Dr Betz

                        My daughter was 13 when diagnosed, currently we are waiting and watching. her curves are 20*T 23*L, or varies depending on who is reading the radiographs
                        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

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