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  • #1

    Many ????s - Doctor recommends surgery for 11 year old daughter

    Hello all! I am new here. I have been reading posts for a fex days and have decided to join. My daughter, Lydia, was diagnosed with scoliosis at 7 years old. She just turned 11 years old in February and has been in a Providence brace for the past 2 years.

    In the past 6 months her upper curve has progressed 6 degrees to 40 degrees (the 18 months prior to that she had very little progression in her curves) and her lower curve is somewhere in the 20s. At her visit two weeks ago, her doctor told me she needed surgery and continuing to wear the brace would not help. He said the surgery wasn't an emergency situation, but he felt he could get a better correction and eliminate her rib hump if we go ahead with the surgery within the next 6 months or so. I was shocked because I had expected just a routine visit. We have an appointment on Wednesday (she is getting an arm cast removed because she had broken her arm doing gymnastics 6 weeks ago) and the doctor will answer any additional questions we have then. I think they will do bending x-rays at this visit also because Lydia has never had them before and I asked them how far she would have to be fused. I do know that her Risser is a zero. She is now 5 feet tall and one of the taller girls in her age group of friends, but I expect her to be maybe 5'8" at full growth. I was very concerned about the fact that she will not grow anymore in the fused area, but the assistant told me that growth in the possible fused area of the spine would not be that significant to overall growth in height (I'm not sure what I think about this).

    My Dad is a Shriner and he really wants us to get an opinion from the Shriner's Hospital, so we have applied to go the the Shriners Hospital in Greenville, SC. We had not gone before because it is about 4 hours away (I think) and it was just more convenient to see a closer pediatric orthopedic surgeon at NC Baptist Hospital (Wake Forest).

    Another issue is this, when Lydia was first diagnosed, they did an MRI because she was so young and they told us she had a syrinx (fluid inside the spinal cord which can somehow affect scoliosis). We saw a pediatric neurosurgeon, and he told us it was a very tiny syrinx and not a concern unless it got larger which I read could happen in adolescence(and, if that happened it could be quite debilitating). Anyway, we had another MRI done 2 years ago and everything was the same. The neurosurgeon then told us that the little place in her spinal cord might not be a syrinx, but just a hollow area where the cord did not close all the way up when it was formed. He said we might want to have another MRI when she was grown, but saw no need to follow her. She has no neurologic symptoms and no other health problems. I am now questioning whether she should have another MRI just to make sure nothing has changed since the scoliosis has progressed so much.

    If anyone has any advice or input I would greatly appreciate it. Also, if you know of any questions I should ask the doctor on Wednesday, please let me know. Thanks in advance for you help.

    Alice
    Tags: None
  • #2
    Hi Alice,
    I live in the Charlotte area. We see Dr. Wattenbarger at OrthoCarolina but also got 2nd opinion at Shriners (Dr. Pete). It was a hard decision because we really liked both Dr's. Go to Shriners and get the 2nd opinion. I don't think you'll regret it.

    Scoliosis is so hard to predict. We discovered our Daughter's curves at 42 and 35. We were advised to wait. They progressed so quickly and 8 months later they were 70 plus and 55 plus. We wish we had done the surgery earlier because we feel she would have gotten better correction and less of a rib hump. Then again, if we had jumped into surgery we also would have questioned ourselves.

    I don't think you can go wrong with the 2nd opinion. Shriners is great! We chose Ortho for a number of reasons but not because we didn't like Shriners.

    My best to you. I will private message you my e-mail and phone number if you want to talk.

    Cheryl
    NCM

    Comment

    • #3
      Hi Alice,
      Boy, looks like you have alot going. It is always reasuring to get a second opinion. If you have any doubts what so ever, get it. I would assume if surgery is considered, the surgeon would require another MRI, just to make sure nothing has changed. Before my son had scoliosis surgery, a MRI was ordered. His surgeon wanted to make sure the spinal cord was ok. Remember, you are the one who has hired your surgeon, if you want a test done, even if it is to make you feel better about everything, ask for it.
      I always take a list of questions for our doctor, always have, always will. I get so nervous about what he is gonna say, that I'm afraid I'm gonna forget something important I might have wanted to ask. So as far as something to ask him, I'd say: I want another MRI done, is this possible? If not, he better have a darn good reason not to order one, if it is what you want done.
      Good Luck with your appointment.
      LeaEvelyn

      Comment

      • #4
        Hi Alice,

        I can imagine how hard this is for you and your daughter. Know you are not alone here.

        A few things you mentioned jumped out at me. As young as she is, with a Risser of zero, you want to make sure you question, in detail, the surgeon's plan for fusion surgery. Will he recommend anterior and posterior fusion? If they fuse only the posterior (back) side of the spine, the risks of her developing crankshaft problems as she goes through adolescence is higher. Ask how many children this young he has operated on, successfully.

        When the assistant told you that the area they will fuse will not effect her height significantly, did they give you any statistics or documents to back up their statment? When young children are fused, it makes me nervous. There is a time and a place for fusion, I just want to make sure you are deciding on the right recommendations at the right time.

        I also agree a second (or more) opinion is necessary. You can't undo a fusion. Once she's had surgery, her spine will be forever changed. You want to make sure you are doing the very best for her.

        I agree that a repeat MRI is in order, especially if she's pre-pubescent and hasn't had one for 2 years.

        Good luck and keep us posted.
        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
          even though your daughter was diagnosed when she was 7, at the age she is now and with curves that size, i would say there is every chance that a brace can do what it is supposed to and that is to HOLD her curves for at least another couple of years. a well-fitted brace can do this.

          i was diagnosed at 14 and braced for 18 months. i did achieve a bit of correction whilst in my brace but this was temporary, the brace for me at least, was never designed to gain full correction (or "cure" if you want to see it that way) but it did limit my progression during my last few years of growth.

          when i had surgery, my lumbar curve was 52 degrees (i was 18 years old) and it's been corrected to the picture on the right

          i'd urge you to get that second opinion. i think with a structural curve of 40 degrees, 11 years old with a risser of 0 is too soon. ok i'm not a surgeon, but your doctor said it himself - it's not an emergency. a lot of people talk about 18 year olds as if they're ancient and incapable of getting a good correction, because there are lots of children who have surgery at 14 or 15. i realise that every case is different and if curves are 60-80 degrees then it's very difficult to say no, but if your curves are moderate, there is little difference in correction. my surgeon offered surgery to me when i was 16 and i turned the opportunity down. he told me that was fine, waiting another two years would make no difference.

          there are always options. whilst you may be looking at surgery eventually, my belief is that if those measurements are accurate, it's not your time yet.
          diagnosed aged 14 (2001)
          braced from july 2001 to february 2003 to hold curves
          fused T11-L3 on july 16th 2005 (aged 18)
          Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
          scoliosis support forum

          Comment

          • #6
            I had surgery aged ten, fusing from T1-T12. My height was not noticeably compromised - by the age of ten a child's torso is something like 80% of the length of its potential adult size, and most of the child's growth as a teeanger will be in their limbs. I'm now 5'3" and no-one has ever noticed that my torso is shorter than it should be - it's noticeable only to me, because I have to shorten the shoulder straps on my tops etc.

            Surgery should only be an option now if your daughter's curves are deteriorating fast. I was first diagnosed with curves of 62 and 40+ degrees when I was six months old. Those curves were held relatively stable until I was ten, when the top one suddenly deteriorated within a couple of months. It had been in the high 60s for years, but was 76 degrees by the time I had my surgery. I was lucky; when I was 4, my surgeon predicted I'd need surgery at around 8 or 9.

            6 degrees isn't a huge amount of deterioration (especially allowing for the 5 degree margin of error!) but I would suggest that you keep a close eye on her and have her checked every month or so for the next 6 months to see if the curve really is deteriorating fast and becomes an emergency. If it is, then I'm afraid surgery is probably the only option. Since your surgeon has already said it's not an emergency situation yet, I'd be reluctant to agree to the surgery.

            It's not so bad though, if she does end up needing the operation at this age - children bounce through surgery! I had further surgery when I was 18 (to extend my fusion to L3 in order to fix the lumbar curve) and even at that age it took me a lot longer to recover.

            Good luck to you and Lydia,

            Toni xx

            Comment

            • #7
              Alice,

              One of the doctors we saw (we got 3 opinions) said that by the time a child enters adolescense that the majority of growth is in the limbs. I can't remember which doctor told me this but he said that since she was nearly 14, it shouldn't be noticeable.

              Just watch those curves carefully. Some kids progress really slowly. My daughters curves progressed really quickly. I kept noticing that I thought she was taller and then she'd be shorter than me. Maybe find a place in your house to measure her height and measure her every few weeks. If she gets shorter, the curves are most likely moving. I've never heard this anywhere else and it may be bad advice but this is how I knew my daughter's curves were moving between appts.

              Cheryl
              NCM

              Comment

              • #8
                This was one of my many concerns too since we were told she needs surgery. My daughter is almost 12, Risser 0 and curves T50, L30. The surgeon from Shriners MA, said she will mostly grow in her limbs too. The fact that the fused part will not grow worries me a great deal too, but to him this was insignificant in the total growth she has left. She was 1'56m (sorry, we use metric system)when diagnosed in October with T40, L30 and now is 1'61m. I check her height on a wall of the house every week or so. I am very confused about whether to wait till she at least gets her period or have the fusion in the next months.
                Like Carmell said once a spine is fused that is permanent. It's a tough decision for any parent. Good luck.
                Pola

                Comment

                • #9
                  Pola,
                  How many more meters do you think she will grow? Are you and your husband tall?
                  I am thinking of you my friend.
                  Hugs
                  Cheryl
                  Last edited by cherylplinder; 04-26-2006, 04:22 PM.
                  God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

                  Comment

                  • #10
                    Alice,
                    I took my ten year old to Shriners in Erie, PA a couple of weeks ago. She has not begun her adolescent growth spurt yet. She has a thoracic curve in the vicinity of 30 to 38 degrees. Her lumbar curve is compensatory at 27 degrees.
                    Dr. Sanders said that no brace would prevent her from progressing to surgery, but recommended that I hold off as long as I could because, in his experience, the lumbar curve would deteriorate after fusion and require an additional later surgery. He told me to wait until around 45 degrees or so, if we could.
                    I have e-mailed him to ask if any brace will lessen the curve she enters surgery with. Haven't heard back yet.
                    Blessings,
                    Cheryl
                    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

                    Comment

                    • #11
                      Update on Appointment

                      UPDATE: My daughter had her appointment with the orthopedic surgeon today. I went in with a list of questions which he answered. Following are some of the questions he answered for me:
                      1) Thoracic Curve Degree? 43-45 degrees (I had on the prior appt, been told 40 by the physician's assistant, so this means Lydia's curve has progressed possibly 9-11 degrees in 6 months instead of 6 degrees)
                      2) Lumbar Curve Degree? 20 degrees
                      3) Results of bending x-rays? How much would he fuse? He would fuse from T4 to L1 (thoracic curve only) and he believes the lumbar curve would correct itself.
                      4) Anterior or Posterior Fusion? Posterior
                      5) Length of Surgery? 4-5 hours
                      6) Hospital stay? 5-7 days
                      7) Bone graft? he would use bone from the bone bank, he thinks recovery is easier
                      8) Blood transfusion? we (parents) could donate 2 units for her which she would get more thank likely, he thinks 2 will be enough
                      9) How long out of dance? 6 months
                      10) How long before cartwheels and back bends? 1 year minimum
                      11) How will surgery affect adult height? insignificant amount because fusion area is not too large and should not be much growth in that area anyway
                      12) What about her syrinx? He advised me to call neurosurgeon for a repeat MRI or said they would call if referral necessary?
                      13) Genetic Testing? I asked this because in addition to scoliosis and the small syrinx, she has coloboma of the left iris (noted at birth), hypoplasia of tooth enamel on one permanant tooth (noted approx. 2 years ago), a bifid(split) uvula(the little part that hangs down in the back of your throat) (noticed by pediatrician only a couple of months ago) and mild eczema (diagnosed approx. 4 years ago). I don't know if any of this may be related to anything, and to me she is perfect and healthy, but I started wondering only a couple of days ago if any of this could be related to some syndrome or something. I became concerned about the possibility of some other abnormality of the heart or something that could cause a problem during surgery? I know, I'm a worry wart, right? Anyway, basically the surgeon thinks Lydia is fine, but would refer her to a geneticist if I request it. I really don't want to put her through that so I am not sure what to do?
                      14) When to do the surgery? He said he recommends within 6 months

                      I still have not heard from the Shriners, but will try to keep you all updated? If anyone has any advice or comments, please post.

                      Thanks to all!

                      Alice

                      Comment

                      • #12
                        Hi Alice,
                        I just read your post and I'm sure you gave some info about your daughter in previous posts. So I apologize for not knowing all of the info.
                        It's interesting to see that your surgeons are talking about surgery while my doctors at Shriner's are telling me it is too pre-mature to talk about surgery for my daughter. And my daughter has larger curves!
                        She has an upper of 39 and a lower of 40. She is a 0-1 risser and just got her period this month. She is 12. They said the next 6 months will be telling. They want her to wear a brace (she wears spinecor, but believe me they would rather her be in hard) and if she gets through the next phase without increase, they would just let her be. If she increases, she will be 13 and done growing when they would do surgery. They didn't even want to talk about surgery. I brought it up and they totally didn't see that as something to discuss now.
                        So why are we getting such different reactions from orthopedics?
                        Any ideas?
                        Melissa
                        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

                        • #13
                          Hello Melissa,

                          I have no idea why we have been given such different opinions. Did you read my update post (just above your post)? My daughter's doctor did tell me today that her thoracic curve is 43-45 degrees and it has increased 9-11 degrees in the past 6 months. He is worried that the curve will continue to increase at a very fast rate. During this time (past 6 months), she was wearing the same type of brace (Providence) that she had worn for the previous 18 months when there was no significant change. However, we are not going ahead with surgery at this time. I have researched a lot and I want to make sure we do the right thing. Therefore, we are seeking a second opinion at the Shriner's Hospital in Greenville, SC.

                          Which Shriner's Hospital do you take your daughter to? How do you like it? How old was your daughter when she was diagnosed? Did she have an MRI of her spine?

                          Alice

                          Comment

                          • #14
                            Cheryl,

                            I noticed that you said that your daughter's doctor said that the lumbar curve would get worse if she was fused too soon. My daughter's doctor did not mention that possiblity. In fact, he said the lumbar curve should correct itself. He will only fuse the thoracic curve. You mentioned that your daughter's doctor recommended waiting until the thoracic curve was 45 degrees before surgery. At that point, will he fuse both curves or just the thoracic? If only the thoracic, what will keep the lumbar from getting worse at that point?

                            Also, I assume your daughter is not wearing a brace at this time since the doctor said it would not help. Lydia's doctor said there was no use for her to wear the brace anymore, but I'm almost afraid not to make her wear it just in case it is helping some.

                            Thank you so much for answering my questions. It will definitely help me as we decide what to do.

                            Alice

                            Comment

                            • #15
                              Pola,

                              I do know that 2.54 centimeters is appoximately 1 inch. If I understand you correctly your daughter was 156 cm and is now 161 cm. This would be 61.4 inches (5 feet, 1.4 inches) and 63.4 inches (5 feet, 3.4 inches) - so she has grown 2 inches during that time. My daughter grew 1 inch during the 6 months when her curve progressed 9-11 degrees. The way I understand it she would have grown even more than 1 inch if not for the scoliosis. In other words, if the curve were straightened out, she would be taller than she currently is. My daughter has not started her period either, but her doctor did not seem concerned. I really like her doctor, however, I am very cautious about this and I am concerned because she is so young (just turned 11) so we plan on getting a second opinion. Has your daughter's curvature progressed slowly or rapidly?

                              I pray that you will be able to make the best possible decision for your daughter and have a peace about it.

                              Alice

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