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  • Need some insight

    Today we seen our second opinion. Although we were happy with the first surgeon and are on a wait list for the surgery we felt we still needed some reassurance that unfortunatly didn't come out that way. This Dr. told us that at 47 degree's this would be cosmetic and that there is no way of knowing that her back and knee pain is a result of scoliosis and that her rib hump will not be gone after. Although he feels she is in the range of surgery it is not necessary. He did not give much insight into options. Our first Dr. was sure her pain was caused by scoliosis and felt her best option is the surgery that bracing at this point would only prevent it from getting worse at best for now but over time she will increase a degree a year. He also told us that the surgery would take care of the rib hump. At this point she will only have to have the thorasic done if we wait she may need lumbar as well and both Dr. agree with that. We are once again confused as to what to do Anyone out there with insight regarding her pain and rib hump from experience surgery or not.
    Catherine
    Mom of Danielle 13 years old
    45T degree in Feb 2008
    47Tdegree May 2008
    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

  • #2
    Well, it's an interesting counter example to my one daughter who was told she needed surgery when her curve was at 48* but was not having much pain at that point. She did develop daily pain near her right shoulder blade between the decision to have the surgery and the surgery and had progressed to 58* on the day of surgery. Even if her curve magically stopped at 58* (NOT likely in the least), she would have to live with that daily pain.

    Your daughter has pain but it seems that her curve is not progressing. That's a tougher call.

    ETA: I misspoke below (italicised section)... the first guy's comments are similar to those of our surgeon. I got confused there.

    The second guy's comments comport very closely with our surgeon. The first guy's comments do not.

    In re not knowing whether the rib hump will be gone, I don't understand that. The pedicle screws and rods are known to correct well over 50% of the rotation in most cases. My daughter's rotation was corrected over 90% in my estimation. Now I understand some kids are fine-boned and can only have the hooks and that sometimes does not result in the same percentage correction as with pedicle screws. But I think hooks still correct it a lot as in almost as much! Someone correct me here if that is wrong.

    I sort of disagree with saying surgery would be cosmetic when the child has daily pain. It doesn't seem right to call it cosmetic only in that case.

    If she were my child, two big concerns would be:

    1. having the surgery as a child versus an adult, (i.e., no guarantee that making it to adulthood below surgery territory has a high chance of letting the child avoid surgery as an adult), and

    2. having the surgery sooner rather than later to avoid a longer fusion in the lumbar (i.e., very high chance the curve will not stop moving).

    I think either consideration ALONE AND ALL BY ITSELF would be enough for me to pull the trigger and get the surgery. With both considerations, in addition to daily pain, I would schedule it ASAP.

    Just my thoughts on the matter. I wish you luck. It's never an easy answer it seems.

    Best regards,
    sharon
    Last edited by Pooka1; 05-22-2008, 02:39 PM.
    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
      Thanks for your input Sharon. We have been put on the waiting list and have not really changed our minds at least my daughter and I have not. My Husband on the other hand is on the fence. He has been through some major health issues himself and has spent a considerable amount of time in hospital and has great fears for our daughter having to go through this, but she does want this. Hearing your thoughts really does help. Thanks
      Catherine
      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


      • #4
        I hope more folks chime in so you have more ideas on the table. Most of us come into a discussion like this with very limited experience. I have had one kid go through posterior fusion (T4-L1). We are seeing if a brace holds her twin's curve. My opinions are largely formed on the basis of their cases, what two orthopedic surgeons have said about their particular cases, and what I read on this group though I have done a fair bit of outside reading. I know there are wildly different opinions out there.

        Perhaps you can ask your husband to read 5-10 random adult testimonies and then 5-10 child testimonies so that he has a better idea of how this surgery is tolerated in each group. His experiences as an adult will likely not map onto your daughter's experience as a teenager in terms of tolerating this surgery.

        My daughter who had surgery was saying she was glad to have had it by the second week out. It is amazing how kids bounce back from this. It is not two months and she seems normal like before the diagnosis. After Thanksgiving, she will have her old life back as it was and likely for several decades at least thanks to the surgery. I think it's the best thing since sliced bread.

        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
          Catherine-- I will add just a little (ha! I am so sorry, but I never can seem to write "just a little"! ) and hopefully not muddy the already murky waters you are wading through... it's a super tough decision, especially since it's one you are making for/with your daughter rather than for yourself.

          My experience is only with myself-- an "older" adult who needed surgery. My information is based on what I've read in books and online and from what has been shared on the forum. I am by no means well-educated in this-- just kind of self-taught, so take my thoughts for what they are... just my thoughts.

          I think you need yet another opinion... and from an experienced doctor who specializes in adolescent scoliosis. My gut feeling is there is some credence to what both doctors have told you already, so don't throw the baby out with the bath water in doctor #2's case. I think he is being ultra-conservative, but that is not all bad. I think he's gone overboard by saying it's purely cosmetic at this point... but also realize that they cannot promise you the moon and stars. With many scoli surgeries the pain does not go away. And from the little I've read, rib humps also do not magically disappear in all cases. If he said he could straighten her totally and get rid of the rib hump and the pain-- and that didn't happen, you would be extremely upset (rightly so!) and he would have misled you. Most scoli docs warn against thinking you'll get super correction and all problems will be solved. The main reason for the surgery is for some correction-- but above that, for halting the progression and stabilizing the spine. The cosmetic results are the "cream" that usually accompanies that. It seems that I've read that the surgeon really can't tell exactly how flexible (and workable) the spine is just from seeing the x-rays, even with the bending ones... so they often can't tell (exactly) what they'll be able to do, in the way of correction, until they actually are working on you.

          As far as age and length of fusion go: the younger you are, the better correction they can usually achieve and you have a quicker recovery... a young body responds much easier to the rigors of the surgery itself, plus is much more pliable and easier to correct... an older body (and it depends on how old and what kind of shape, extent of fusion, etc.) takes MUCH longer to recover from the huge trauma that it is put through-- and % correction is considered much lower... Sometimes we end up very lucky-- like I did, with really great correction, all things considered. Then there is the adjustment to the "new you"-- possibly 20-40 years or more of your muscles and posture adjusting to the "crooked you", have to relearn and adjust to new positions/jobs/stances, etc. That is very hard! And there are other problems too, that come with an aging spine, and so sometimes more procedures are done. More obstacles come with age, if you want to put it that way... plus a much longer time to recover for many of us. I have heard 1-3 years. I'm thinking I'll be in that 2-3 year range, since I've already reached my 1 year anniversary. Some adults recover sooner, but kids seem to bounce back quite quickly.

          Length of fusion is important-- and if there is need to include the lumbars in the fusion, your daughter will lose a major part of her flexibility. People don't have a whole lot of flexibility in the thoracic area anyway, because your rib cage holds you there. Once you get into the lumbars and need to fuse there, the further you fuse, the more rigid you become. If there is a way to avoid fusing the lumbar area, it would be very beneficial for her. If both specialists said later on the lumbars would need to be fused, I would really consider that strongly as a factor. Just think about all you do right now where your lower back bends... it would no longer have the ability to bend forward and back, side to side very much at all. I hope this helps a little. Again, this is from an "older" adult's viewpoint...
          Last edited by Susie*Bee; 05-23-2008, 02:23 PM.
          71 and plugging along... but having some problems
          2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
          5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
          Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

          Corrected to 15°
          CMT (type 2) DX in 2014, progressing
          10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

          Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

          Comment


          • #6
            Hi Catherine,

            I was in the exact same situation as your daughter 18 years ago (and I live in the same province . I was a little older - 14 - and had a 47 degree curve and pain in my back. It was recommended that I have the surgery. We went ahead and scheduled it and in the two months before the surgery, my curve progressed to 62 degrees. My family tends to have their growth spurts later, which I think was one of the reasons they scheduled me for surgery and didn't wait - they knew I still had some growing to do and I hadn't gotten my period yet. If your daughter seems to have finished growing or has gotten her period, I think sometimes they're more inclined to wait.

            The surgery got rid of the pain I had in my back - mine was definitely from my curve. I still have a rib hump though, but I don't think it's as noticeable as it was before my surgery. I don't regret having the surgery done - even though my mom researched every possible alternative to surgery, the pain and something in my body just knew I needed the surgery.

            Good luck to you and your daughter whatever choice you make.
            - 39 years old
            - At age 14, curve progressed from 45 degrees to 62 degrees in two months.
            - Surgery in 1990 at the Children's Hospital of Eastern Ontario (CHEO) with Dr. Letts. Fused T5 to L2. Corrected to about 30 degrees.
            - Harrington rod
            - Herniated disc - L5/S1 - January 2008. Summer 2009 - close to making a full recovery.
            - New mommy as of February 2011
            - Second child - September 2013
            - Staying relatively painfree through physio exercises!

            Comment


            • #7
              another thought...

              One other thing to consider is that there is no good time to have this surgery... so if it's something imminent, then take that into consideration. When would be best? Now?-- or during any of these years: high school, college, job, young married, motherhood, and so on. In general, the older you are, the longer the recovery. Since your husband is reluctant, that really might be something for him to ponder... it will always interfere, but it is easier on all involved (in my opinion) when the patient isn't the one with lots of responsibilities on his/her shoulders, when the insurance is there and adequate, and when there are nurturing, loving people to take care of them for at least awhile.
              71 and plugging along... but having some problems
              2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
              5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
              Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

              Corrected to 15°
              CMT (type 2) DX in 2014, progressing
              10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

              Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

              Comment


              • #8
                Thanks for all your input, I find the information I have received here and talking to people that have both had surgery as young teens and as adults and they most agree the timing is very important for many reasons She has come terms with the fact that she will most likely need this surgery in the future and does not want to live crooked and in pain (as she puts it). Although she is scared she has not waivered on her decision to do this now rather then later. Her mental well being is just as important as the physical. The fact that she does not have to much school pressure right now she is going into highschool this year and she does well in school she can make up what ever she needs to without worring about University or Collage. The social will be very difficult as she is very involved in sports and social activities through school and church, but she has good friends that will help her through this. Thanks again. I welcome an further input
                Catherine
                Mom of Danielle 13 years old
                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


                • #9
                  Catherine,

                  I have been thinking about this thread very much since you started it. I took some time today to try to work out a flow chart or a decision tree that might help AIS patients ask better, more targeted questions of the surgeons. I went through a few designs but ended up abandoning it. I may try to work on it again later.

                  I must say, if my daughter was having pain and had curves in the forties that were likely to progress and I had two surgeons telling me any wait would very likely increase the fusion region down into the lumbar, I would get on the waiting list.

                  In my daughter's case, I didn't see fusion as a choice. I saw it as her only and best option to get back to her pre-scoliosis life. Posterior spinal fusion is referred to as the gold standard in treatment for a reason.

                  Nobody knows what the out years hold for patients fused with this instrumentation. But we do know what the "now" looks like absent surgery and they were looking very unlivable. Surgical techniques constantly improve. If in 30-40 years, my daughter needs a revision, it will be even better than it is now. I have nothing but hope.

                  Right now, I worry much less about my fused daughter than about my braced daughter.

                  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


                  • #10
                    so true what you say about medical advancement. I have talked to people that had it done 20 years ago and people that have had it recently and the differences are great. As well as the difference in the people that had it as children opposed to waiting until adulthood. I am very glad about our decision to stay on the list and the more people I talk to the more confident I feel about our decision. This has been a very difficult time for us as you well know and it is so wonderful to talk to people whom have lived and are still living it. Thanks again.
                    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


                    • #11
                      Here's how I see it for you:
                      1) Get a 3rd opinion.
                      2) Curves that start out close to 50 degrees at your daughter's age, will most likely progress (My daughter was finished growing when she was 50 degrees. We thought we would avoid surgery but a year later she progressed to 66 degrees & she ended up getting surgery one month ago).
                      3) Re-read Susie-Bee & Pooka's comments on saving her lumbar spine so she doesn't lose flexibility.
                      4) Tell you husband to try not to compare his hospital experiences with his daughter's. She is much younger & I can say from first hand experience, that the kids REALLY DO handle the fusion surgery with ease & recover VERY quickly. In no time, they do not even remember what went on during their hospital stay & are very busy being kids & do not dwell on their spines like we adults do!
                      5) Don't second guess your decision. Go with your gut feelings & especially those of your daughter. If she is on board, then 1/2 the battle is won. She's in the right frame of mind & wants to improve herself now. It's much better than waiting until her spine is more stiff from age & having her NOT be able to carry her babies around.
                      6) Best of luck & keep us posted!
                      Martha
                      Mother of Laura, Age 19
                      Diagnosed with S curve at Age 13 (49*T/32*L)
                      Wore brace for one year (Wilmington Jacket)
                      Posterior spinal fusion on April 17, '08 with Dr. Flynn at CHOP (Age 16)
                      Fused T2-L2
                      Pre-op curves: 41*UT/66*T/34*L
                      Post-op curves: 14*UT/19*T/19*L
                      Note: At 1 yr. post-op appt, UNFUSED lumbar curve improved to 14*!!
                      OK to email me at: malka22@comcast.net

                      Comment

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