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  • Surgery for smaller curves or not?

    Hi everyone,

    Just wanted some opinions on the following ........

    Today we had our first follow up appointment with our surgeon for Elysia and her new brace. The brace seems to be working extra well and is reducing her Thoracic curve from 38 to 22 and her 23 lumbar to almost straight. Our surgeon wants to see us in October to talk about Surgery. He feels because she is 12 and only Risser 0 that her curve will definately progress and that surgery is inevitable. Since her curve is so flexible at the moment he wants us to think about surgery because he sees it as an opportunity to get a great correction rather than wait later as it progresses and she matures and the correction not so great. She has quite severe rotation in her spine already and a large rib hump.

    So... 4 - 5 years of life in a brace - with fingers crossed that it doesn't worsen and then life after that with a disfigurement (alright by me, not so sure how she will feel when she's older).

    Or a life time of having your back fused with metal rods and hopefully no future problems.

    He doesn't want to "miss the window of opportunity". I don't want to say "yes, operate" and watch my child go through pain BUT I don't want to say "No - don't operate" and then it progresses and she has to have the operation with not such a great outcome (by that I mean straighter back, less rib hump).

    I think at the moment I would feel stupid putting on this forum that my child is having surgery for a 38 degree curve.

    What does everyone think and has anyone else faced this dilema?

    Thanks for any advice

    Del
    Elysia 16 in Feb 2010
    Sydney - Australia
    Feb 2008 Fused T5-L1 and 5 ribs removed.
    Dec 2009 - Crankshafting
    Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
    L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

  • #2
    Del,

    It really is such a big decision because statistically we can usually figure out who will progress to surgery. One day there will be a blood test to determine if your child has the aggressive type of scoli and they will do the surgery when the curves are still small. I personally would be okay with that if a blood test determined that her curves were going to progress. But personally I held out hope that Nicole would be in the minority and not progress. Since no test could tell us she would eventually be at surgery level, we kept giving her a chance to avoid the surgery.

    Personally, I couldn't have had it done at even 40. Also, none of the surgeons wanted to even discuss surgery at that level. I understand completely why your surgeon is saying that. But if you have her x-rayed every few months, you could still have it done before it gets out of control. Plus you still have the hope that she won't progress. Rotation is another factor. If there is a lot of rotation, then sometimes that means more than the degree of curve.

    Can you get a few opinions from various hospitals? I believe that would help you decide.
    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

    Comment


    • #3
      Hi Del,

      Laura here from England - the one with the Australian in-laws visiting (they've had to buy a few jumpers!).

      Sorry I don't have any advice, just more questions. I'm very puzzled by your post. I thought the whole point of bracing was to try to avoid surgery?? When Immy had her casting the orthotist said that her curve is very flexible and that, whilst they can't make any promises, they were hopeful of achieving some correction... I thought this sounded good, now I'm not so sure!

      Laura
      UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
      10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
      Surgery due to take place early December 2011 at the RNOH, England.

      Comment


      • #4
        Hi Del,

        I'm hoping you mis-interpreted what the surgeon was saying. The "window of opportunity" is HUGE for someone like Elysia, IMHO. She is young, she doesn't have any other medical issue (that I know of) that would complicate her scoliosis, her curves are responding to bracing-even if that means remaining stable, etc. She has MANY arguments on her side to NOT think surgery for a long time. If she gets to her 20s or 30s and has not been observed and suddenly found out she had a 70+ degree curve, THEN I would say she missed that window of opportunity. That's an extreme example, but still.

        If she were my daughter, I wouldn't even consider surgery yet. Her spine will be very flexible for several years to come, unless there is something going on we don't know about. You have time to weigh all your options, including long term bracing, and regular xrays. I can't imagine a surgeon wanting to fuse a pre-teen who is not skeletally mature (there are complications/risks with fusing too soon to consider too) with only a 30-something degree curve. YIKES.

        Good luck and keep us posted. I'm proud of you for questioning this recommendation.
        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


        • #5
          I can't believe the surgeon is even recommending surgery with your daughter's curves being so small & her being so young. It sounds like she has a lot of rotation but still.... Isn't the brace supposed to help the curves? It sounds like the brace is working. My son did not have a rib hump so I'm not too familiar with what point a surgical intervention is recommended for them. I do know that our surgeon kept us coming back every 3-6 months for x-rays until his curves were what they are now. He wore a brace for almost 4 years & we kept hoping surgery wouldn't be necessary.

          I highly recommend more medical opinions & no rushing into surgery. Your daughter has all her teenage years to finish growing. You can read about plenty of older teens on this forum & SpineKids who get great correction from later surgeries. Maybe your daughter won't even end up needing surgery.
          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.

          Comment


          • #6
            Laura - yes the whole purpose of bracing IS to try and halt the progress. Our Surgeon seems to think as she gets older she won't like the hump on her back. Well that's for her to decided - I don't think she'll like Rods in her back either. He's said that if she didn't have the rotation her curve would be more like 60??? Huh?

            Laurie - Yes I know - heaps of kids have curves of 70 plus and get down to 20 with surgery. More medical opinions - problem is here in Sydney there is only about 6 surgeons who even do this kind of surgery. Not so many to choose from.

            Carmell - No I didn't misinterpret what he told me. He said "as a surgeon I'm licking my lips looking at these x-rays" - "I'm not trying to push you for surgery but why avoid the inevitable". I think he was impressed that with the Thoracic curve pushed back her Lumbar was almost straight.

            Matjestnic - (I've been following your story with Nicole on spinekids). Yes - I think he is concerned about the rotation - otherwise he would just leave it in the brace. What concerns me is the fact that Elysia tells me she is more comfortable at school in the brace than out of it because her shoulder blade and rib hump cause her discomfort sitting at school. The brace evens her back out. She's all for the operation - even though we've talked things through with her - we don't want to say too much in case we DO end up down the surgery road.

            All in all there is no way that I would allow surgery under 50. I guess we do what everyone else does and play the waiting game. Thanks for your input.

            Del
            xxx
            Elysia 16 in Feb 2010
            Sydney - Australia
            Feb 2008 Fused T5-L1 and 5 ribs removed.
            Dec 2009 - Crankshafting
            Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
            L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

            Comment


            • #7
              Hi Laurieg6
              In November 2006 when the surgeon first met my son, whose thoracic curve was 72*, he said his recommendation was surgery but he would wait to see him again 4 months later to see, if his curves continue progressing at a great rate. He would then decide whether to wait longer for surgery or not.
              He wanted to give Patrick as much growing time as possible. As it was, unfortunately his progression continued and surgery had to happen sooner. Not the ideal situation since he had a fair bit of growing left. He also had two rib humps one huge the other getting real big.
              The other point I want to make is regarding flexible spines. My son exhibited a very stiff spine in the x-rays. But in the surgery his spine was very flexible so he got an amazing correction mid 20's down from 79*.
              My point to you is that I think you should get some other opinions and not jump into a surgery just yet. It is possible that she may never need surgery or it may be better to wait until she has finished growing. Even though I am glad to have surgery behind us, I would have opted to let Patrick finish growing first. Even if we had waited on the surgery a few years I think we still would have gotten the same correction.
              After the unknown the waiting is always the hardest part. I can fully understand why you just might want to put this behind you sooner then later. But think of it this way too, if you are able to wait a few years then maybe there will be some new and better way of doing scoliosis surgery and your daughter will benefit from it.
              good luck in all your decisions and let us know how it's going.

              Ramona
              mom of Patrick, age 15 at time of surgery
              diagnosed July 2006 curves T58 L 38

              Nov. 2006 curves T72 L38
              also lordoscoliosis

              feb.2007 curves T79 L43

              Surgery May 16 2007
              fused T4 to L1

              Comment


              • #8
                To Ramona

                Hi Ramona,
                I think your message was meant for someone else, not me. Maybe it was meant for Del or Laura in Jax. Your message to me seems to be about both of their issues. Plus you mentioned a daughter & I have 2 sons, no daughters. Also, I've already had 4 surgical opinions who all concurred about the need for fusion, despite my son's young age. I'm not happy & still trying not to freak out constantly & to be positive about it with him & everyone else, but I believe the decision is made. My son wants the surgery. His curves are fairly high & because he has congenital scoliosis maybe, & is in his adolescent growth spurt, all the doctors seem to think we need to do this within 3-6 mos. of our appts. with them or my son could end up looking much worse & need a much more difficult surgery. I just want him to lead a normal, healthy life & am miserable about the need for this surgery but am trying to cope. I've been reading your posts and I'm really glad Patrick is now doing well. I sort of can't wait for Alexander's surgery to be over so our whole family can try to move on from all the focus on it, the appointments, etc. Thanks for your support regardless of who it was really meant for.
                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.

                Comment


                • #9
                  Yes Laurieg6,

                  I knew that Ramona meant me and not you.

                  I can understand what you mean about wanting to put the whole thing behind you and letting yourself, son and family move on. The horrible thing about this illness is the waiting. You just seem to be spending your life counting down weeks and days until the next appointment and then after that appointment back on the net, questions questions questions until your satisfied and can take the next rest period before it all starts again at the next appointment.

                  It's all very scary - all the more as I've said before because it's decisions we must make for our kids lives and future. Would be easier if it were for ourselves.

                  The people on these forums almost know more than the doctors I think - some very good advice on here. Thank heavens for the internet!!!!

                  Hope all goes well.

                  Del
                  Elysia 16 in Feb 2010
                  Sydney - Australia
                  Feb 2008 Fused T5-L1 and 5 ribs removed.
                  Dec 2009 - Crankshafting
                  Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
                  L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

                  Comment


                  • #10
                    Oops!!!
                    My apologies to you both, I did goof up and I'm so embarassed. I hope I didn't offend either of you.

                    Del- I really feel for you and Elysia and all the others out there in regards to the constant waiting game. I don't know if it's lucky on our part that scoliosis was only a part of our lives for 11 months before Patrick's surgery and that's 11 months of not having to deal with all the bracing issues. So many of you go through years of bracing and then still have to face surgery. I was so consumed with scoliosis for such a small time really.

                    Laurie-I realize even with 4 expert opinions, all saying the same thing for your son, it isn't an easy decision to go ahead with Alexander's surgery. But I think in your case you have made the right choice. Patrick's surgeon told us in boys once the curves are high they are relentless in their progression. I don't know if that is the case in congenital scoliosis. You have the benefit that he wants to get on with the surgery. Patrick was like that too and I gained so much strength from him because of this. Although I was strong for him most of the time I had weak moments where he was doing the consoling. We have I think because of all this developed a very strong relationship and we have great discussions even now about all that has happened over the past year.

                    I'm sending all my support to you both, and I'll try to be more careful about names in the future. Take care.

                    Ramona
                    mom of Patrick, age 15 at time of surgery
                    diagnosed July 2006 curves T58 L 38

                    Nov. 2006 curves T72 L38
                    also lordoscoliosis

                    feb.2007 curves T79 L43

                    Surgery May 16 2007
                    fused T4 to L1

                    Comment


                    • #11
                      Del,

                      Immy went for her SpineCor assessment today. Her curve has increased to 38 degrees (10 degrees in 6 months and she's only grown about 2cm). Her consultant said that it's over 90% certain that she will need surgery. He'd like to put it off for as long as possible to let her grow as much as she can (she's only 133.5cm). He said that he has children with 70 degree curves that he's still waiting to operate on because their curves are still flexible enough to achieve a good correction. I guess we all hope to avoid surgery but not many do. Sorry to be a bit negative, but it was that kind of day.

                      Laura
                      UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
                      10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
                      Surgery due to take place early December 2011 at the RNOH, England.

                      Comment


                      • #12
                        Ramona, of course no offence taken - gee after what you've just been through, your head would be so full. Plus I quite often get confused on here as to who I've spoken with and told what. I was really feeling with you before Patrick's operation (even though you weren't aware of me). I could feel the panic that was running through your viens - spending all your adrenalin cleaning the house!!! That would definately be me! Hope Patrick keeps improving every day. As a boy he'll probably wear his scars as a badge of honour - I know my husband has a few scars from his childhood years and he brags about how he got them. (Definately a male thing!)

                        Laurie - So what have you decided? Spinecore or TLSO - I remember you were tossing up between the two. Immy is now where Elysia is at 38 degrees - only the age difference. I felt so happy at our appointment to see the brace not only helping with her Thoracic curve but straighten out her Lumbar curve. I was also so relieved that it was working as I didn't think we had it tight enough. It is now a part of Elysia's life and at the moment she is fine in it. It hasn't stopped her from doing anything. But we do get four hours out of an afternoon - I have to force her out of it - she wants to keep it on because she knows it's doing such a good job. Her only problem with it is that she does get hot - AND it's only winter here - well as Wintery as Australia gets - it's actually crazy - we're in drought in-land yet the coast is having so much rain we've got floods!!!!
                        So we'll have to see how the brace goes in the summer.
                        Let us all know what you've decided for Immy and how it goes.

                        Del
                        xx
                        Elysia 16 in Feb 2010
                        Sydney - Australia
                        Feb 2008 Fused T5-L1 and 5 ribs removed.
                        Dec 2009 - Crankshafting
                        Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
                        L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

                        Comment


                        • #13
                          Ramona,
                          You didn't offend me at all with the name confusion. I can totally understand it & it's no big deal. Thanks for your support of our decision regarding the surgery. Despite my ongoing obsession with, & angst about, scoliosis & the surgery I really feel that we have no other choice. I have to do what is best for him & deal with what may be my own grief for his imperfect spine. I know that no one is perfect & everyone has problems & that Alexander's issue is more obvious than some others, esp. when he had to wear the brace. He is dealing with this so well, just like Patrick. He is amused by my continued focus on & need for support about it. He knows he's going to be fine after the surgery & I am trying to know that as well. Our regular pediatrician said Alexander's curves were the highest he'd ever seen in a boy. He'd never had a patient with congenital scoliosis caused by a hemivertebra. I do keep trying to help Alexander open up about any concerns/feelings or thoughts he's having about the surgery but he hasn't been very talkative yet. Anyway, thanks for your kind words of support for me in this very stressful time.

                          Del,
                          The waiting in between appointments can be excruciating, wonder if the brace is working, if your child is wearing it enough, what her/his curves will be at the next measurement. Hang in there though because there is always the chance that your daughter won't need the surgery. We kept hoping for six years. We spent tons of time & money doing all kinds of alternative therapies that could possibly have the potential to stabilize Alexander's curves. Both his curves were in the 30's or low 40's at our first measurement though. It sounds like your daughter's curves are lower than Alexander's were at the beginning. Good luck with the brace & thanks for your support of me as well.
                          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.

                          Comment


                          • #14
                            del - don't get surgery for your daughter unless she absolutely needs it. i had the fusion in '99 and since then both the rods broke. i talked to six surgeons who all said a removal surgery would be too risky and might not even help with the pain or even make it worse. anyway, now i can't lift over 25 pounds and i still get pain plus my ribs are still noticeably uneven. i don't know my exact degree of curve but it was in the low thirties or high twenties. anyway i was fourteen when i had the surgery and i'm twenty one now so i understand her being for it thinking it will fix all her problems and for the first year or two it does but i would seriously be stoked if my biggest worry was whether i had a rib hump or not. i rushed into surgery based on my doctor's advice and i wouldn't want her to feel the same regret when she could have had a normal life with a slight disfigurement that probably nobody else even notices. besides if the curves are small a brace will probably fix it and maybe she wants the surgery to get out of wearing a brace but seriously nobody cares it's only a few years out of your life that you'll forget about later. definitely get some second and third opinions if you can and maybe just wait a year and see how far it progresses because i don't believe about that 'window of opportunity' thing either, they called mine a 'preventative measure' and now i'd much rather deal with whatever they were preventing than how it is now. she's still young and growing just keep it monitored and if there is a huge increase then maybe consider surgery but unless she's in pain or seriously impeded in some way it's really a very extreme response. anyway i hope this helped i'm not trying to scare you but surgery is risky and they don't always tell you everything that can go wrong, both during and after.
                            jessica

                            Comment


                            • #15
                              Thanks Jessica,

                              Yes I had thought of the "no turning back" once you have the operation. It's all very scary and you put your trust in your doctor that they know what they are talking about. I would definately get a second opinion before signing on the dotted line for an operation.

                              So sorry to hear of everything that you've gone through. What caused the breakage??? Where did you get fused??? And what kind of rods did you have inserted???

                              Cheers
                              Del
                              xx
                              Elysia 16 in Feb 2010
                              Sydney - Australia
                              Feb 2008 Fused T5-L1 and 5 ribs removed.
                              Dec 2009 - Crankshafting
                              Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
                              L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

                              Comment

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