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  • back pain and scoliosis

    My daughter is 10 and was confirmed with scoliosis in December of 2007 at what the doctor said was 9%. At her check up in May, she had progressed to 19%. They want to put her in a brace. I am ok with that. We will see what happens.

    My question is...has any of you parents had to deal with your child having back pain? She has had all the x-rays and mri's and there seems to be nothing there. She has been having lower back pain (usually while carrying heavy objects or bending over) for about 2.5 years. Her dr said that scoliosis does not cause pain and that they cannot find a cause.

    If you have anything to pass along to me, I would love to read it.

    Susan-newbie

  • #2
    My daughter developed daily pain just central to her right shoulder blade in the few weeks before her surgery. This was almost certainly due to the rotation and(or) the curve. Kids don't have pain for no reason.

    The curve was in the mid to upper fifties at that point and was thoracic. She never complained of pain before the curve got that large.

    It took about two months after the surgery before that pain went away.

    She never complained of lower back pain. I'm guessing your daughter has a lumbar curve?

    Good luck.

    sharon
    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


    • #3
      I am sorry (I am very new to all of this) but if you mean lower back, then yes, the larger curve is in her lower back and opposite direction from most curves.

      I am just learning all of the vernacular and what kind of questions to ask.

      Comment


      • #4
        Yes sorry. I meant the lower back.

        I don't understand why some doctors insist that scoliosis doesn't cause pain. My daughter was turning into a pretzel and did not get surgery too soon. It is not hard to believe she would get pain in the area that was taking the brunt of the rotation.

        Moreover, my other daughter, her twin, has a thoracic curve in the low 30s but has almost no rotation. She is far more normal-looking than her twin was at that degree curve. She has no pain.

        I hope the brace works.

        Also, I hope MariaF comes along and mentions vertebral body stapling which seems like a viable alternative to bracing in some cases.

        Again, good luck.
        sharon
        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


        • #5
          Hi Susan,

          Your daughter is very young to be developing a seemingly progressive scoliosis. You mentioned that she's had a spine MRI, right? If so, and they told you it was clear, I would go back and find a PEDIATRIC neuroSURGEON to read the actual MRI scan. Pain with mild scoliosis is not normal, not common, and should not be ignored. Low back pain is a red flag for several medical conditions that need to be ruled out. Other (occasional) symptoms to watch for include changes in her bowel or bladder habits, being prone to constipation, tingling in her legs/feet, weakness in the legs/feet, unexplained fatigue, etc. These usually happen occasionally - not daily. Occasionally may mean you notice something once every 3-4 weeks that is not "normal" for her.

          Is she being followed by a PEDIATRIC orthopedic surgeon who specializes in scoliosis in young children? Even if she is, I would suggest getting a second (or third or more) opinion from one (ped. ortho.). Peace of mind will mean a lot in this case. You, as the parent, want to make sure you are getting the best care possible for her.

          Good luck and feel free to ask any questions or share your experiences. Lots of parents here have walked in similar shoes. You are not alone.
          Carmell
          mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

          Comment


          • #6
            Unfortunately, we are just starting on this journey and now are being made to change insurances. We will need to be finding a new doctor starting 7/1. I have chosen a physician per her current one's recommendation but do you think I should start calling around for another one for her back or first go through her new pediatrician. I really like her osteopedic doctor that we met last week. I was going to ask him for recommendations.

            Any guidance would be greatly appreciated.

            Comment


            • #7
              Hi again, Susan,

              Unless your insurance demands a referral to a pediatric orthopedic surgeon from a pediatrician, I would do both - find my own, AND ask for a recommendation from a trusted professional. You can't have too much information. The more information you have, the more recommendations you get, the better you will feel (in the end) about the decisions that must be made. Each opinion will give you different information. Some docs are great to answer specific questions in detail, while others only give bare minimum answers. You have time to research and find the right answers for her situation.

              If you are in the Seattle area, I would suggest getting an opinion from Dr. Kit Song. He has lots of experience treating young children with various spine issues, and other medical conditions that may complicate scoliosis treatment. I've heard very good things about their teams. We have also met with a pulmonologist from that hospital (Dr. Redding). He is absolutely fabulous with the kids. Not that you need a pulmonologist, but just that the quality of docs seems to be excellent there.

              Good luck and keep us posted.
              Last edited by Carmell; 06-04-2008, 11:33 AM.
              Carmell
              mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

              Comment


              • #8
                Originally posted by Pooka1
                Also, I hope MariaF comes along and mentions vertebral body stapling which seems like a viable alternative to bracing in some cases.
                Hi Sharon,

                Yes, VBS is a good alternative to bracing (and even possibly avoiding fusion) in SOME cases as you said. It depends on many factors as you know.

                I almost laughed when I read your post because sometimes I feel I post CONSTANTLY about VBS (mainly because I wish I had learned of it sooner) and don't want anyone else to be uninformed about it. So, sometimes I try to restrain myself lest I sound like a broken record :-)

                But, since you asked, here's the VBS website for Susan or anyone else who is interested in learning more:

                www.vertebralstapling.com

                Susan - you also mentioned something about insurance, understandably, being an issue and seeking recommendations for pediatric orthos. My first inclination would be to perhaps consider a Shriners Hospital. A few of these hospitals perform VBS - but, more importantly, there are MANY other options they utilize to treat scoliosis and scoliosis is definitely one of their specialties. (In fact, regarding VBS, at 19 degrees, your daughter's curve would still probably be a bit too small for VBS - right now anyway) but Shriners Hospitals have some of the best docs in the country (Betz in Philly, Strum in Chicago, a few in LA whose names I can't recall at the moment, etc.) - and in case you aren't familiar with how they work, you don't need to worry whether or not they are in your insurance network because, as good as the care is, they don't charge for it! So if there is one not too far from you, it might be a good option. They will even assist with travel if that's an issue - either helping with costs or driving you back and forth - I have even heard of them doing this for distances as far as 5 or 6 hours each way. (Of course, if you find a good local pediatric ortho who comes highly recommended and that you are comfortable with, that's great. I just wanted you to know about Shriners Hospitals and that you really can't go wrong with them - they have a great rep in the orthopedics world).

                Hope this helps and best of luck to you.
                Last edited by mariaf; 06-04-2008, 06:43 PM.
                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/

                Comment


                • #9
                  back pain

                  My daughter was dx in the fall but she had been complaining about back pain for at least a year prior to that, in fact that is how I noticed her curve. She played hockey and complained when we got home I went to rub her back and noticed the muscle on one side was hard as a rock and told her to stand up straight she told be she was and I was shocked. Her hips and shoulder blades were very uneven and she looked like she was leaning to one side, I could see the curve. Her back was not like that in the summer, she had a big growth spurt about 3 to 4 inches in a couple of months. She has alot of pain bending and picking up and carrying things, she babysits and she notices it alot playing and picking up the kids. Her surgeon told us that the back pain is definatly from the scoliosis. Because of the curve one muscle is streched and the other is very tight. He also said over time compensating can cause hip problems as well as knee problems. She has been going to physio to prepare these muscles for surgery and had some relief from the pain but now she is playing soccer and the pain has increased. Her doctor feels it is important both mentally and physically for her to stay active and continue her sports, she just has to stay in tune with her body and know when it is too much. Hope this helps
                  Last edited by gillespie; 06-04-2008, 11:10 PM.
                  Catherine
                  Mom of 14 year old Danielle
                  T45 degree curve Feb 2008
                  T47 degree curve May 2008
                  T50 degree curve Sept 2008
                  Surgery Nov 24th 2008
                  Ontario, Canada

                  Comment


                  • #10
                    I believe there is a forum titled "scoliosis does not hurt rant" or something like that. I have had pain since the beginning and still have dull pain everyday (10-15yrs now). Every doctor says scoliosis doesn't cause pain and I like to reply- do you have it? do you know what its like? Doctors don't have a machine that tells how much pain a person is in or where exactly it is coming from. So if something shouldn't case pain (such as scoliosis) does and there is no medical way to determine what is causing the pain they just simply say scoliosis doesn't hurt.

                    Keep in mind my view and opinion may be tainted or pessimistic but its caused by the numerous doctors (orthos and pedis) that all tell me there is no way scoliosis can hurt when I'm in pain daily. I'm only in the 20ish degree curvature range so not only should it not hurt it shouldn't cause any other problems (which it does). So I resort to this forum and other reading trying to determine what helps since my doctor obviously doesn't.

                    Yoga, exercising (building core muscles), stretching, PT all helped to ease the pain for me.

                    Hope that helps and hope you have better luck with the dr's than I did. But trust me if your child says they are in pain and the Dr. says no way believe the child. My mom was relentless in trying new Dr.'s and places and finally one ordered an MRI to be done where we found I had herniated/bulging discs which are now (10yrs later) degenerative. At least I know to keep an eye on them- finally one doctor thought to look at more than just an x-ray to determine if something else could be triggering the pain.

                    Maybe scoliosis in and of itself does not cause pain but all of its side effects- moving muscles/stretching/pulling things out of alignment does.

                    Comment


                    • #11
                      Hello. I wanted to let you know that before my daughters surgery we actually found out about her kyphosis/scoliosis because she was in pain and had an x-ray. The ortho said that normally kyphosis/scoliosis doesn't cause pain. But from what I'm reading here, it does and still does!! My daughter had her surgery a year ago and has been on Morphine since. She is now on a Fentynol patch for pain. No one can tell me why she is in pain but I'm assuming that it is from nerve damage possibly. She was at 92 degree curvature corrected to 30-35 degrees. I'm not going to put her through the nerve testing which is horribly painful. So the morphine is going to have to do....which it does. I find it so sad though that these Dr's don't address the pain. Skylar's was so bad before the surgery that she had to quit PT (she had had a stroke and brain tumor prior). The surgery went well but she is so far behind everything that she had learned how to do again. She is still not into PT because of the pain. If anyone has any suggestions, I would love to hear them too.

                      Melanie
                      Skylar's mom (age 16 and many other medical issues)

                      Comment


                      • #12
                        Back pain and kids ...

                        Susan,

                        Not everyone with scoliosis has pain (as kids or adults), but I had it from the time I was 10 years old until I had surgery at 39.

                        I don't know why some doctors refuse to acknowledge the connection between scoliosis and pain, but I do know if one ever told me that I'd find another physician ...

                        Regards,
                        Pam
                        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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                        • #13
                          Sometimes I wonder if the docotr's ever bother to read these forums, then they'd know the truth. Everyone is different, but many seem to go through similar things. They should read this for research.
                          I had back pain prior to my surgery, but after I healed I haven't had much. Just the occassional pulled muscle, achy back during flu ( I swear I feel it more where the rod is attached), oh--and when it's cold out, it hurts more from my hip bone graph.
                          Everyone has different pain levels too, so some might not comment as much as others.
                          Emily

                          Comment


                          • #14
                            I DEFINITLY had back pain before getting my surgery.
                            I found it worse after working at my part-time job at a grocery store, because I had to bend over to serve customers and lift some pretty heavy boxes. I worked here two years, grade 11 and 12, and I found the pain MUCH worse in grade 12. By the end of the shift I was SOOO tired. I even had to ask my manager to give me only 6 hours and not 8 hours because I just couldn't handle it. It wasn't my legs that bothered me while standing all shift at this job, but my back.

                            I got massages for my back pain which helped alot. But I'm not sure it's right for everyone.
                            17 years old - Female - Canada
                            Had fusion surgery June 26th, 2008
                            Feel free to ask me ANY questions about my experience!

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