Announcement

Collapse
No announcement yet.

Appointment

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Appointment

    Hi everyone,

    My son, Alexander had a "routine" post-op appointment last Thursday. His surgery was 1 1/2 years ago. The x-ray looked "great" and there was little that was recommended, despite my asking, for his posture that still isn't as great looking as the x-ray. After the surgeon left the room (after we waited for an hour to see him), the nurse suggested we could "play around" with orthotics from the drugstore and see if they helped. The surgeon did say there might be a leg length discrepancy but that it would take too many x-rays to figure it out, especially because Alexander really feels great and can control his posture when he thinks about it.

    The surgeon also mentioned that Alexander was a risser 4-5 according to the growth plates in his hip bones. He seemed to be saying that Alexander, who is only 13.5 years old, may not grow much more. He is only 5' 1/4" which is very short, even for my short family. My dad had a big growth spurt at 16 and my husband is 5'7". I am only 5'1" and my younger son is even tinier for his age than Alexander ever was. Don't most boys, even post-fusion, continue to grow until possibly their early 20's? I can't imagine Alexander won't grow at least several more inches. He's already in puberty, even shaving about 1x/week but still...

    Does anyone know about any of this? Can any of you offer information or comments about growth, esp. post-fusion?

    Thanks in advance for any advice, information or support.
    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.

  • #2
    Hi Laurie,

    On one hand, I'm very happy the xrays looked great! That's a good thing in the very long scope of Alexander's life. The short term issues of posture, Risser score etc. are hopefully temporary. I still think he'll be fine - posture-wise - once he's done growing (which I don't think he's close to being done growing yet - Risser 4-5 or not).

    I'm not certain what your ortho means when he says finding out if there is a leg length discrepancy (LLD) will take "too many xrays to find out". That's crazy, IMHO. My Braydon has a 5cm LLD. Yes, you can take multiple xrays of both legs, measure each bone, add the measurements from each leg, subtract the shorter from the longer (if they are different) and the end result is a LLD. However, that's not always necessary, especially in mild cases like Alexander. You can do some playing at home to see if an orthotic may help his posture (without him thinking about it). Have him take off the shoe that is on the convex side of his curve (the side away from the side he leans into). Have him walk around with one shoe on (shoe on the shorter/leaned into side) and see if that makes any difference in his posture/balance. If it doesn't, then an orthotic may not make any difference. If it does, then maybe you would feel better if he had an orthotic. I still believe that once his body is skeletally mature (for a while) and "settles" into his fusion, he'll be much better balanced. I can't back this up scientifically - just a gut feeling.

    My Blake (non-scolio kid) was barely 15 when an ortho told him his growth plates were closed and that he hoped Blake was satisfied with his height. Well, within a year after that time, he grew three more inches. So, I wouldn't put much stock in the Risser 4-5 that you were told. The spine may have only one major growth spurt during adolescents, but the limbs may grow for a period after the spine stops growing. Lots of variables involved, I think. My nephews on hubby's side of the family all grew at least 2-3 inches after turning 20. My 18yr old is hopeful he follows the family tradition.

    My point is to relax and try not to worry about this. Can you do anything about it right now? Probably not. Life happens. Keep going forward and keep doing the best you can for your family - as always. You're doing great.
    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


    • #3
      Carmell--

      Thanks so much for your comments in response to Laurie's query. There's so much I don't know, and I really appreciate them, as well as your experiences with growth vs Risser grade, etc.

      BTW, at 13, Sidney's bone age is 8 months ahead of his actual age (within standard deviation, I think--and still Risser 0), and he is the only kid in his class who has a little dark mustache (no shaving yet), even though he is the youngest boy. I read somewhere, I think, that testosterone levels tend to be high with scoliosis...don't know if that's true or not, but it sounds like Alexander fits that, as well.

      We expect Sidney to grow at least a few more inches. My husband said he was finished growing at about 17. But I know many boys grow into their early20s.

      Laurie--great news about Alexander's x-rays! We are in the same situation 3 months post-op, as you know. Sidney still has a list to the left and a drooping shoulder. I think we will try Carmell's take-off-the-shoe test just for the heck of it. We wouldn't do anything with orthotics without asking the surgeon, of course, but it would be interesting to see. Thanks for keeping us posted.

      Mary Ellen

      Comment


      • #4
        Carmell,
        Thank you so much for your reassuring comments and stories. I really appreciate your perspective and ideas and I will try the one shoe off test and see what happens. It's really great to hear that your son was able to grow several inches after being told he was done growing. I try to remain hopeful that Alexander will keep growing (maybe even reach 5'5" or so), despite the young age of his fusion. I think it's harder for boys than girls to be so small but I do know a few very short men who seem much bigger than they are because of their large personalities and self-confidence. How is Braydon doing?

        Mary Ellen,
        Thanks for your support as well. That's really interesting that you know Sydney's bone age vs. his actual age. How can the doctors tell such minute details, I wonder? I'd like to find out Alexander's bone age. There are lots of boys in Alexander's grade at school who are in some form of puberty, getting deeper voices, etc. but I guess Alexander is a bit ahead of many of them. That's why I still worry about the height issue.

        I know it's good news about the x-ray but I just wish I would never have to say "stand up straight" again.

        Take care everyone,
        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


        • #5
          Laurie,

          I totally understand the short stature issues. My 17 1/2 y.o. daughter is only 4' 10 1/2" and she hasn't grown for at least 3 or 4 years. She was so hopeful after surgery that she would "grow" at least 2 inches. She didn't. She only gained about 1/2". Jamie was diagnosed with Scoli at 12. By 13 when her surgery was performed, she had reached skeletal maturity. Her bone age was always way ahead of her real age. Her doctors always x-rayed her hand when checking her bone age.

          I agree with you, though, it is easier for girls to be shorter than for boys.

          Mary Lou
          Last edited by Snoopy; 02-25-2009, 06:53 PM.
          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


          • #6
            Laurie--

            RE bone age: the report that went with the x-rays at the first surgeon we went to did not mention bone age. However, when we went for a second opinion at Shriners (where we ultimately ended up for surgery), the x-ray report noted the bone age and the standard deviation for such. I was interested in that; I had heard the term but didn't know how to get the info for Sidney. I think different hospitals/radiologists are different in their reports, just as Cobb angle measurements differ between them.

            I wonder if facial hair, voice break, and other Tanner scale markers correlate to bone age? And it's interesting to me that Sidney would be Risser 0 and have a bone age that's ahead of his birth age....there's still so much I don't understand.

            Sidney's voice has deepened, but we're fairly sure he will grow more. Carmell could well be right and there is more growth to come for Alexander. I'll let you know if/when Sidney's height begins to increase. He won't be 14 until mid-summer.

            Mary Ellen

            Comment


            • #7
              Laurie - the best way to tell an accurate bone age is by an xray of the hand/wrist. This (they say) tells them a lot about bone density, growth potential, etc. Braydon saw an endocrinologist last fall, just to make sure he was growing "normally" (normal for him). His blood work showed good levels of hormones (testosterone, and others, I'm sure). The endo said he's fine - he'll grow in his own time. She also mentioned he was a Tanner 2 (barely) at the time. Very little pubic hair, no change in his voice, peach fuzz on his face, etc. His facial structure looks more teenager now - so he IS growing. He is 4'7" and wants to get to at least 5' tall (he'd prefer something close to me - 5'4", but I'm not sure his body will grow that much). When you look at his legs compared to his torso - there is a huge discrepancy. His legs are LONG and his arms are LONG, but his torso just won't grow. Very early fusion does that.

              I'm afraid this is another one of those things that is out of our parental control. We have to let life move forward, however it proceeds. Hopefully our kids have enough self-confidence and self-esteem to get past any physical issues that may be a problem. Being happy within yourself is the goal, I think.
              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
                Well I think Alexander's bone age must be ahead of his actual age. He'll be 14 in April which is still, I hope, way to young to be done growing. He's never had a hand x-ray but he's always been in the 10th to 25th percentile for height. He has all the signs of puberty - he's hairy (no chest hair yet but it's everywhere else) with a deep voice and no longer has a baby face. Luckily he seems very self-confident so far, despite everything he's been through. No adolescent angst to speak of. No real interest in girls at all either. I guess I should feel glad he's at least 5 ft tall and that he really should grow more, despite what the ortho said. Carmell is totally right (as usual) about the need for our kids to be happy within themselves because they have so much to offer and to do with their lives. I am definitely happy that Alexander doesn't seem to think about height as much as I do. We toured his probable high school for next year (yikes!) and he's just figuring out the world in his still very innocent way.

                Thanks for your input and support Mary Lou, Mary Ellen and Carmell. (I'm sorry if I spelled your kids' names wrong :-))
                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
                  Laurie -- just wanted to say Good Luck with High School. My DD is a Freshman and EEK!!! It was a tough transition even for her...who is my happy go lucky child.

                  I STILL feel like I have no clue what's going on at the High School most of the time. I check the daily announcements just so I have some sembelence of an idea.

                  You should see the confusion I feel I have with going through stuff to get her school abscense organized. They have 3 different offices (not counting the school district) that I have to talk to & hope they are all on the same page. I have a feeling we may be getting a phone call going "why is your child not at school?" if everything doesn't line up here.

                  I'm hoping by the time my 6th grader gets ready to be a Freshman, I might have a clue. My daughter will be a Senior then...maybe I'll know what I'm doing but just as soon as I figure it out, they will change something.
                  Becky
                  Mom to DD (15) with S 48*+ curve
                  Had her surgery March 9, 2009

                  Comment


                  • #10
                    Becky,
                    Even with all the offices at Jesse's school informed of his surgery, we still got a call, two actually, to confirm I was aware he was absent.
                    Bethany

                    Comment


                    • #11
                      Laurie, I'm with you on the high school thing. I can't believe we're at that stage. We just looked at Sidney's probable school this week. And Becky, I already feel kind of clueless. So I'm glad I'm not alone.

                      Mary Ellen

                      Comment


                      • #12
                        Becky, I really hope things go smoothly for your daughter with the surgery and the school. Hopefully she won't have to miss more than a few weeks. Alexander's surgery was during the summer so he was home for about 7 weeks. By the last few weeks, he couldn't wait for school to start because he was so bored being at home.

                        Mary Ellen and Becky, You are not alone feeling clueless about school. We were at an Open House last night for Alexander's probable school and I felt very lost at times. There is so much going on there and it seems so much more intense in many ways than middle school.

                        It seems like such a bureaucracy that I'm not surprised Jesse's school could have called to make sure you knew he was absent, Bethany.
                        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

                        Working...
                        X