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  • Good News - I Think

    Mackenzie had her 6 month appointment with Dr. Skaggs last week. While we were both anxious to hear, I felt like her curves hadn't progressed much (they looked the same to me).

    So - the good news is:
    1 - Her curves went from 37 thoracic, 37 lumbar to 39 thoracic, 37 lumbar
    2 - Dr. Skaggs told Mackenzie to throw her brace away since he feels confident she is done growing (of course, Mackenzie would have FIND her brace in order to throw it away - just kidding, but barely).
    3 - Dr. Skaggs told her she didn't need surgery, that her back was beautiful (because the curves are balanced) and she didn't need to come back for a year.

    So the "I Think" part comes in because I'm a mother! I worry that the thoracic is growing because the first specialist said it was 28. Then we switched to Dr. Skaggs and he said it was 37 (five months after the first x-ray). When I asked if that progression was normal, he said he wasn't really sure there was much progression and wouldn't comment on an x-ray that had been taken elsewhere (which I understand since he couldn't "quality control" how the x-ray had been taken). And, I have to say, the x-ray was taken by a colleague of mine who did it as a favor because he thought I was over-reacting (yes, he is an ortho spine surgeon - but does adults only). He actually turned white when he saw Mackenzie's x-ray - and immediately referred her to a pediatric spine surgeon.

    Now it's 39 (6 1/2 months after the second x-ray). I realize there's a margin of error on the x-rays, but I'm still afraid that 28 to 37 to 39 is progression.

    So - sorry to rattle. Just had to get this off my chest. I'm really happy her lumbar curve didn't progress - and maybe a 2 degree change is minimal - and within the margin of error. I'll keep my eye on her back and will definitely take her back if I think the thoracic is progressing.

    Thanks for listening. And I'd be interested to hear what your thoughts are.

    Lisa
    Lisa
    Mom to Mackenzie
    diagnosed March 2007 at 28 degree thoracic, 40 degree lumbar
    August 2007 - 37 degree thoracic, 37 degree lumbar
    March 2008 - 39 degree thoracic, 37 degree lumbar

  • #2
    Hi Lisa,

    I'm with you. I'd be cautiously optimistic about the appt with Dr. Skaggs. My daughter's lumbar curve was 39 degrees when she was told we could go 2 years between visits (but to come back if we had questions/concerns). She was 17 by then and had been Risser 5 for almost 3 years. We waited about 18 months before another xray, and the measurement then was 35 degrees. So no progression and even some improvement, but still within the margin of error. Then she waited about 3 years between xrays. Again, the curve measured 35 degrees at almost 22yrs old. She's doing well, and not having any signs of progression. Like you, I worry that in the future she may. Scoliosis is something she will continue to monitor and watch through the years. I'm holding my breath (for a very long time, I hope) that she never needs surgery. Surgery now wouldn't be a good decision. No need now.

    BTW, her thoracic spine has always compensated well with about a 24 degree curve, give or take a few degrees with each measurement.

    I hope Mackenzie does well for many years to come.
    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
      Thanks Carmell,

      I was hoping you'd reply. I remember when Mackenzie was first diagnosed, you told me not to stress too much - and you told me what happened with your daughter. I'll be cautiously optimistic, as you suggest.

      My distrust comes from her pediatrician telling me she didn't have scoliosis when she was 12 (although I could see the obvious hip height discrepancy which is one of the "signs" of scoliosis). Before that, I thought he walked on water - he'd always been so right-on with Mackenzie. But I learned a valuable, but HARD, lesson through that - Doctors are humans too - and they make mistakes.

      I always appreciate your calm and reassuring approach. Thank you.

      Lisa
      Lisa
      Mom to Mackenzie
      diagnosed March 2007 at 28 degree thoracic, 40 degree lumbar
      August 2007 - 37 degree thoracic, 37 degree lumbar
      March 2008 - 39 degree thoracic, 37 degree lumbar

      Comment


      • #4
        Hi Lisa,

        As usual, Carmell's posts made tons of sense. I just want to say I'm happy to hear what sounds to me like good news overall. 37 to 39 is as you know well within the margin of error, so I too would be cautiously optimistic.

        There's really nothing else you can do at this point until her next checkup so try not to worry (boy, would people who know me laugh at that one - I am a HUGE worry wort!). But I try to tell myself as well that it doesn't do any good.

        As far as pediatricians, even the best ones don't seem to be too well trained in scoliosis. Our pediatrician had missed David's scoli at first and it wasn't until I insisted on an xray that she sent us for one. Up until that point she had been our family pediatrician for 10 years and was right on the money about EVERYTHING else. Go figure.

        Best of luck to your daughter in the future - I think she'll be fine.

        Take care,
        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


        • #5
          Lisa:

          Can you be sure your daughter has finished growing? What is her Risser #?How old is she?

          Ruth
          Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

          Comment


          • #6
            Thanks Maria. I agree - there's nothing I can do at this point. I've actually had that attitude since about the 4th month after her diagnosis. My mantra has been "it either will or it won't" and we'll deal with it then. Of course, I forget sometimes (like the last week). Thanks for reminding me.

            Ruth - the doctor told us that Mackenzie was finished growing. He didn't tell me her Risser score and I forgot to ask. As prepared as I am for the visit - I almost always forget to ask something - even when I have it written down.

            Mackenzie will be 15 in June. She's between 5'2" and 5'3" - but would be about 5'4 to 5'5" without her double curve (according to Dr. Skaggs). I'm 5'5" and her dad was 5'9", so that sounds about right for her. We don't have any really tall people in either of our families. (Also, she started her period in December 2006 - but she's well-developed and was even then).

            I'll continue to keep my eye on her thoracic curve - but I have to agree that she's "probably" grown. I guess I could call back and ask her risser score.

            Lisa
            Lisa
            Mom to Mackenzie
            diagnosed March 2007 at 28 degree thoracic, 40 degree lumbar
            August 2007 - 37 degree thoracic, 37 degree lumbar
            March 2008 - 39 degree thoracic, 37 degree lumbar

            Comment


            • #7
              Originally posted by MacksMom
              I'll continue to keep my eye on her thoracic curve - but I have to agree that she's "probably" grown. I guess I could call back and ask her risser score.

              Lisa
              I have to agree, too, based on everything you posted about her and what Dr. Skaggs said that she most likely IS done growing.
              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


              • #8
                Kids are so funny. Mackenzie always wanted to be "short" (which probably meant 5'2" or 5'3"). She was always so afraid she'd be a "giant" even though I told her that would be almost impossible since both Jim and I are pretty average. I really think it was because she didn't want to be taller than the boys in her class.

                Of course, over the last couple of months (as the boys are starting to grow), she's told me she wants to be tall so she can be a model! Poor kid! I keep reminding her that less than a year ago, she wanted to be short!

                Lisa
                Lisa
                Mom to Mackenzie
                diagnosed March 2007 at 28 degree thoracic, 40 degree lumbar
                August 2007 - 37 degree thoracic, 37 degree lumbar
                March 2008 - 39 degree thoracic, 37 degree lumbar

                Comment


                • #9
                  I meant to tell you all that when we were at Children's LA, Dr. Skaggs and his fellow both spent quite a bit of time talking to Mackenzie about how she "felt" she looked. They asked her how she felt when she wore her bathing suit - did she think her back looked ok, did she feel good about herself. Mackenzie said she thought she looked good (and she does think that) and that she didn't want surgery.

                  I was really pleased that they cared about the psych-social side of this disease. I knew Mackenzie was ok with her back and the way it looks, but I was glad they asked her (and not me).

                  Of course, all it will take is one IDIOT (excuse my irritation and fear) to say to her "what's wrong with your back" to unravel all those good feelings, but I'm keeping my fingers crossed that it won't happen!

                  Lisa
                  Lisa
                  Mom to Mackenzie
                  diagnosed March 2007 at 28 degree thoracic, 40 degree lumbar
                  August 2007 - 37 degree thoracic, 37 degree lumbar
                  March 2008 - 39 degree thoracic, 37 degree lumbar

                  Comment


                  • #10
                    Originally posted by MacksMom
                    I meant to tell you all that when we were at Children's LA, Dr. Skaggs and his fellow both spent quite a bit of time talking to Mackenzie about how she "felt" she looked. They asked her how she felt when she wore her bathing suit - did she think her back looked ok, did she feel good about herself. Mackenzie said she thought she looked good (and she does think that) and that she didn't want surgery.

                    I was really pleased that they cared about the psych-social side of this disease. I knew Mackenzie was ok with her back and the way it looks, but I was glad they asked her (and not me).

                    Of course, all it will take is one IDIOT (excuse my irritation and fear) to say to her "what's wrong with your back" to unravel all those good feelings, but I'm keeping my fingers crossed that it won't happen!

                    Lisa
                    Ahh, the world is full of idiots like that, but you'd be surprised how strong these kids become as they go through different challenges. I find kids like Mack and David and other kids who've dealt with scoli (or any other health issue for that matter) also become very compassionate towards others.

                    What I really wanted to comment on was what you said about how Skaggs and his team looked at so much more than just Mack's back. The folks at Shriners in Philly are the same way. It's always about the "total child" not just the spine.

                    What a great package to get a top ortho like Skaggs or Betz AND to be treated with such compassion!
                    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


                    • #11
                      I totally agree - and one of the reasons I wanted to mention it was so that anyone else doing a search on this site for info on Dr. Skaggs would see that side too.
                      Lisa
                      Mom to Mackenzie
                      diagnosed March 2007 at 28 degree thoracic, 40 degree lumbar
                      August 2007 - 37 degree thoracic, 37 degree lumbar
                      March 2008 - 39 degree thoracic, 37 degree lumbar

                      Comment


                      • #12
                        Hi Lisa,
                        During Chris's pre-op appt., someone came in and asked us if we would like to be a part of a study involving scoliosis. The study was completely anonymous, no names or faces were involved. She took pictures of his back and front (without showing his face) and then he had to fill out a questionnaire. The questions were very similar to the ones that you mentioned. They also asked questions about whether he was ever depressed about his scoliosis, how he felt he looked in his clothes and whether his scoliosis prevented him from participating in any type of activities, etc. There were about 2 pages of questions. We were asked to fill out a questionnaire as well. At his 6 week post op appt., the same girl came back and took more pictures of his "new" back and he had to fill out another questionnaire involving the same type of questions. He let me read his responses, and like MacKenzie, he wasn't bothered by the way he looked either.

                        All the best to you and MacKenzie, and I'll keep my fingers crossed as well that somebody doesn't come along to destroy all of those positive feelings that she has!!
                        Lori

                        Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
                        Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
                        Dr. Flynn is an AMAZING surgeon!

                        Comment


                        • #13
                          Thanks Lori!

                          I've followed Chris' progress. Sounds like he is doing really well.

                          Mackenzie does have pretty good self esteem. That's so hard for teenagers these days because of how mean kids are - and especially for our kids who are struggling with a "deformity" (to them) on top of the other trials/ tribulations of being a teenager!

                          Lisa
                          Lisa
                          Mom to Mackenzie
                          diagnosed March 2007 at 28 degree thoracic, 40 degree lumbar
                          August 2007 - 37 degree thoracic, 37 degree lumbar
                          March 2008 - 39 degree thoracic, 37 degree lumbar

                          Comment


                          • #14
                            Kids Being Funny

                            I just wanted to comment on the tall thing and how funny kids are.

                            My daughter (26° at diagnosis @ 6 yrs old; progressed to 33° 10/07; then 49° 3/08 despite bracing for 3.5 yrs; sched. for fusion in August) told me recently to quit bragging about how tall she is going to be (they were estimating 5 foot 11 inches). I was making comments like, "how about a scholarship for Stanford Women's Basketball" and telling her what a beautiful tall girl she was going to be (on her dad's side her aunts are 6 foot 2 and the other is 5 foot 11). I would also tell folks she was 95%. I was proud of this because in my family 5 foot 4 is TALL!

                            Well, her period started two weeks ago--the same time we found out her curve had progressed more than a degree a month to 49. I was happy because this would predict the end of bone growth soon. So, I told her she may not be tall after all. She started crying saying she didn't want to be short. So, it turns out despite her mother's embarrassing her; her true feeling is she does want to be tall.

                            Well, although menses began, her risser sign is 0 and she is very immature physically. She's probably got a bit of growth to go (she's 5 feet now and just turned 10) she'll outgrow me I'm sure...apparently the fusion will increase height a couple inches and stop spine growth but most growth happens in the legs from here on out so she'll be in good shape. Anyhow, I thought it was cute how our kids are....take care.

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