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  • New and terrified

    I have been following the forum for the last two months since we found out that our daughter has scoliosis. As others have said, I feel so guilty over not seeing this happen to my beautiful daughter. Megan is 13 and her scoliosis was detected at a school screening in January. At the end of sixth grade, she had also been tagged as possibly having scoliosis, but when we saw the pediatrician, she said there was nothing to be concerned about. We should have seen an orthopedic then, but now our options are limited.

    We saw one specialist and greatly disliked him--explained nothing, no bedside manner, ignored Megan. The next day I searched for another doctor and found Timothy Oswald off of the SRS site. He was also recommended by a friend who works for a different pediatrician. It took another month to get in to see him, and his prognosis was devastating. He immediately recommended surgery. Megan has a 44 degree thoracolumbar curve and a secondary thoracic curve. Dr. Oswald did not have any openings until August, but he felt so strongly that it would be too risky to wait that he had his calendar cleared. We are scheduled for April 28th.

    I have shared this news with all of friends and family, and I just keep getting people questioning our decision. My husband feels confident, but I am so afraid. When we went for bending x-rays on Monday, the doctor told us that he feels fairly certain he may have to fuse to L4 which limit Megan's mobility. I keep reading, but I just feel more lost. I don't want to wait and have the surgery be more extensive than it already is, but I feel like all of the other options (bracing, therapy, etc.) are not an option due to the extent of her curvature already. Please help. I feel so confused.

  • #2
    Deep, deep breaths

    Greetings.

    So glad you found the forum.

    So sorry to hear about the diagnosis.

    There are some things that seem a bit out of the norm in your post and I certainly hope others will chime in.

    First, a 44* thoracolumbar curve is not an emergency. I am dumbfounded that Oswald even scheduled you for surgery AT ALL much less cleared his calendar for it. That's subsurgical as far I can tell according to most testimonials and to my understanding of what our surgeon thinks.

    Maria will correct me but that is small enough that it is within range of vertebral body stapling plus growth rods as near as I can figure. If that is what he is planning to do then it would make sense that he should clear his calendar for your daughter. I don't know if Oswald does stapling or stapling plus growth rods though.

    Second, please don't beat yourself up about waiting to get to an orthopedic surgeon. You have no evidence the curve increased appreciably in that time period. If she wasn't in a growth spurt it might not have moved much at all. Please cut yourself some slack here because you deserve the slack.

    Third, I am continually floored by people who don't know a single thing, have done zero reading, have no understanding, etc. about this topic who will nevertheless give you their opinion. Can you see that this is a less than useless exercise? Don't listen to ignorant people on this subject.

    So basically I think you should call Oswald's office and see if he is planning to do stapling plus growth rods. This would be good as there then would be hope your daughter can avoid fusion. Did he determine her bone age (maturity)?

    Good luck.
    Last edited by Pooka1; 04-15-2010, 03:10 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
      Originally posted by grayson mom View Post
      I have been following the forum for the last two months since we found out that our daughter has scoliosis. As others have said, I feel so guilty over not seeing this happen to my beautiful daughter. Megan is 13 and her scoliosis was detected at a school screening in January. At the end of sixth grade, she had also been tagged as possibly having scoliosis, but when we saw the pediatrician, she said there was nothing to be concerned about. We should have seen an orthopedic then, but now our options are limited.

      We saw one specialist and greatly disliked him--explained nothing, no bedside manner, ignored Megan. The next day I searched for another doctor and found Timothy Oswald off of the SRS site. He was also recommended by a friend who works for a different pediatrician. It took another month to get in to see him, and his prognosis was devastating. He immediately recommended surgery. Megan has a 44 degree thoracolumbar curve and a secondary thoracic curve. Dr. Oswald did not have any openings until August, but he felt so strongly that it would be too risky to wait that he had his calendar cleared. We are scheduled for April 28th.

      I have shared this news with all of friends and family, and I just keep getting people questioning our decision. My husband feels confident, but I am so afraid. When we went for bending x-rays on Monday, the doctor told us that he feels fairly certain he may have to fuse to L4 which limit Megan's mobility. I keep reading, but I just feel more lost. I don't want to wait and have the surgery be more extensive than it already is, but I feel like all of the other options (bracing, therapy, etc.) are not an option due to the extent of her curvature already. Please help. I feel so confused.
      Hi...

      Do you know what Megan's Risser score is? I agree with Pooka1, that this is probably not an emergency. And, I hate to see you rush off to surgery if there are other options. If you're interested in another opinion, you might want to consider William Horton.

      Regards,
      Linda
      Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
      ---------------------------------------------------------------------------------------------------------------------------------------------------
      Surgery 2/10/93 A/P fusion T4-L3
      Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

      Comment


      • #4
        I believe that stapling plus hybrid growing rod is not done anywhere but Shriners (Philadelphia). But perhaps other doctors are trying out different stapling/rod combos. For what it's worth, 50* or 55* was what we were told as far as when fusion-type surgery would be considered. Unless there is something unusual about her curve or history, fusion at the age of 13 for 44* seems extreme. Even if fusion is in her future, it would seem worth while to let her grow a bit more. If you are near Philly or willing to travel there, it might be worth getting an opinion there (there is no charge)--they are experienced and good about getting people in for timely consults. Good luck to you and Megan.
        Last edited by mamandcrm; 04-15-2010, 08:00 PM.
        mamandcrm

        G diagnosed 6/08 at almost 7 with 25*
        Providence night brace, increased to 35*
        Rigo-Cheneau brace full-time 12/08-4/10
        14* at 10/09 OOB x-ray
        11* at 4/10 OOB x-ray
        Wearing R-C part-time since 4/10
        latest OOB xray 5/14 13*
        currently going on 13 yrs old

        I no longer participate in this forum though I will update signature from time to time with status

        Comment


        • #5
          Hi

          I can understand what you are going through. This is a very big decision and you want to make sure you have considered all options.

          I agree with others. If the doctor is considering spinal fusion, I do not see the rush at 13 yrs old and only 44 degrees. However, I am in no position to second guess the doctor. For my daughter we have seen at least 4 pediatric orthopedic surgeons and they all had some different ideas on what they would do regarding surgery. So, 2nd and 3rd opinions for something as critical as this is highly recommended. Of course, it gets more confusing when the recommendations are not the same.

          Your doctor may feel there is a sense of urgency if he is considering VBS/Hybrid Rod or Growing Rod (maybe with staples). I would be a bit surprised to see a growing rod for a 13 yr. old (some would consider a 13 yr. old spine developed enough for spinal fusion, so why do a growth rod), but there are many factors that go into it. I have read of some doctors doing the growing rods until maturity and then removing them and adding staples to try and hold it. And others putting the growing rod and staples in at the same time.

          Megan is on the border line for VBS/Hybrid Rod. The recommendation is <13 yrs. old for girls. However, there is other criteria, and girls can develop/grow/mature at different times. Ideally she would still be very immature in her growth and development.

          Here is the criteria for VBS. But these are just guidelines. A consultation with a VBS Surgeon would be required.

          =====================
          (1) age <13 years in girls and <15 years in boys;
          (2) Risser 0 or 1 with 1 year of growth remaining by wrist radiograph;
          (3) thoracic and lumbar coronal curve <45° with minimal rotation and flexible to <20°;
          (4) sagittal thoracic curve <40°.

          If the thoracic curve measures 35° to 45° and does not bend below 20°, then consideration is given to adding a posterior rib to spine hybrid construct at the same time (doing the posterior first).
          ======================

          So, based on this criteria, she may meet most of it except <13, but maybe that is not important if her risser is 0 or 1 with 1 year of growth remaining.

          So, options could be:

          - VBS/Hybrid Rod (hybrid rod with staples)
          - Growing Rods (maybe with staples)

          (two options above are very similar)

          - Spinal Fusion

          I assume, for a temporary period of time, bracing might be an option to stop any further progression while waiting for surgery. Not sure bracing can handle the curves you mentioned. Often a VBS surgeon will put a child in a brace ASAP to try and stop progression until surgery can be done.

          If it was my daughter, and I have an 8 (with scoliosis), 14, and 25. Spinal fusion down to L4 would be my absolute last resort. It is very important to get a 2nd opinion ASAP to see if others feel surgery is the only answer and immediate surgery. I would definitely look into VBS/Hybrid Rod or Growing Rods/Staples before spinal fusion. Hopefully your doctor is already considering a treatment other than spinal fusion (that may be the sense of urgency).

          You are doing the right thing looking at options before jumping into a decision to quick, especially a surgery of this complexity.

          Michael

          Comment


          • #6
            I am sorry to hear of your dd's diagnosis.

            There are many of us here who did not catch our children's scoliosis--please don't beat yourself up.

            You've come to a place where you will find a lot of support and caring people.

            Please do not hesitate to ask any questions--I got the bulk of my questions answered here in terms of what to expect with surgery and such. It is a daunting thing, but you will get through this.

            You will be amazed at the strength this group offers you--use it!

            Comment


            • #7
              Dr. Oswald felt it was urgent because of the location. He said if the curve were to progress, he feels it would require further fusion into the lumbar region. At first, he thought he would have to go into the L3, but after the bending x-rays, he feels that L4 is a strong possibility. She is not having stapling. Her Risser was 4, but she is pre-menarchal which is a bit of a contradiction. The first doctor we saw essentially said to wait because he didn't think bracing would do anything. He didn't come out and say that surgery was in her future, but that was implied. Time is ticking and I don't know what to do.

              Comment


              • #8
                Even when my sons curve was at 68 his surgeon felt there was no urgency to go ahead with surgery. It gave us some time to seek more opinions. And because he was still growing, even with a severe curvature, it was better to wait for surgery as long as possible. When he finally had his surgery his curve was beyond 80 and I honestly feel the outcome was better because we waited a bit. And just to note the bit we waited was just a couple months but it made a difference.
                I realise every case is different but I think there would be no harm to put the surgery off for a month or two and seek several more opinions. Even if the prognosis is the same you will feel better about the whole thing.
                Good luck, I know it's not an easy situation.
                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


                • #9
                  Originally posted by grayson mom View Post
                  Dr. Oswald felt it was urgent because of the location. He said if the curve were to progress, he feels it would require further fusion into the lumbar region. At first, he thought he would have to go into the L3, but after the bending x-rays, he feels that L4 is a strong possibility. She is not having stapling. Her Risser was 4, but she is pre-menarchal which is a bit of a contradiction. The first doctor we saw essentially said to wait because he didn't think bracing would do anything. He didn't come out and say that surgery was in her future, but that was implied. Time is ticking and I don't know what to do.
                  Okay that is very interesting.

                  I have been banging on for a while now about how surgeons should possibly lower the surgery trigger angle if it means less levels fused. It seems from your response that that is actually happening in real life for your dauhgter.

                  My daughters were both in the high 50*s on the table and were both fused T4-L1 (ten levels). I have often wondered if they were fused immediately upon diagnosis (at 29* and something lower which I don't remember ATM) if they could have gotten away with only fusing 4 or 6 levels (or less) right around the apex (T9 for both). But I think they might have been stapled rather than fused at those angles so I don't think early/short fusion would ever be studied unless there is a complete failure of stapling. But if it was ever studied, it could be the case that 100% of kids who get short/early fusions are more stable in the long run compared to stapling. Nobody knows.

                  And as always, the considerations are somewhat different for T versus L curves.

                  And on the Risser, this is not always accurate. She can actually have much of her growth ahead of her and may qualify for stapling plus rods. You might request a bone age determination from a hand/wrist radiograph as this is critical in your daughter's case. The time (not age) post menarche and chronological age are better predictors of bone age than Risser as I understand this except in outlier cases. It is not clear that your daughter is an outlier just from the Risser and her pre-menarche status. I would bring this up with Oswald ASAP.

                  Good luck.
                  Last edited by Pooka1; 04-16-2010, 12:03 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


                  • #10
                    Sorry for chiming in late here, but I see others have given some great advice and shared some good insights so far.

                    My thoughts -

                    I agree with Sharon and the others that it is unusual for a surgeon to 'clear his calendar' and consider it an emergency when the curve is 44 degrees. His explanation about not wanting to fuse more levels if he waited does clear some of that up - but I was still surprised and do not think it's a dire emergency.

                    I can imagine how you feel with the potential surgery date right around the corner - it's not something you want to rush into.

                    I am pretty sure the VBS/hybrid rod is only being done at Shriners in Philly. (I know you said that's not what Dr. Oswald was planning - I didn't think it was - but figure this info may be useful to others).

                    I think the bottom line is - if it were me - I'd like another opinion. I would strongly suggest going to see Dr. Betz and the team at Shriners in Philadelphia - the contact info for the person you need to reach is in my signature.

                    Your daughter could very well be a candidate for the VBS/hybrid rod combination being performed there. I know several parents (from the VBS support forum) who have experience with this and would be happy to share with you. It would definitely be worth the trip because it could be the one shot at avoiding (or at least delaying) fusion.

                    Best of luck to you!
                    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
                      Dr. Oswald is actually on the list for doing VBS, but I think Megan has considerable rotation. I just called Dr. Horton's office to see about getting in with him, but he is retired as of December. I also just called Dr. Oswald's office to ask more questions. I am waiting on the return call.

                      As to why the urgency, the only thing he told us was that he felt L3 was a definite and didn't want to wait for further progression. After Monday, though, he is saying that L4 is very likely. This all just too quick for me!

                      Comment


                      • #12
                        Hi again,

                        Yes, I know Dr. Oswald performs VBS, but for curves too large for VBS there is a non-fusion alternative being performed at Shriners in Philadelphia using both staples and and a hybrid growing rod. I'm not saying that your daughter would definitely be a candidate, but I can't stress enough that I would go to Philly for a consult. (Many parents have told me that after doing so, they learned of optoins they didn't even know existed.)

                        Another option might be sending digital x-rays to Dr. Betz, along with your daughter's medical history, and getting his preliminary opinion before you make the trip. If you like, I can help facilitate this.

                        Please feel free to e-mail me if I can be of any help at all.
                        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


                        • #13
                          In addition to Maria's advice I would get an ACCURATE bone age from the wrist radiograph. Even though the Risser is 4, the menstrual status tells a different story and she really may have lots of growth remaining which might make or break the decision to do VBS/rod versus fusion. In fact I think I read that the growth rate is not linear between Risser 0 and 5 with much of it being done at the later stages. Anyone know about this?

                          She probably isn't an outlier just because of the apparent disagreement between the Risser and her menstrual status but she might be. Either way, there is some chance her bone age is less than the Risser indicates which makes her a potential candidate for VBS/rods.
                          Last edited by Pooka1; 04-16-2010, 02:11 PM. Reason: add "potential"
                          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


                          • #14
                            I wish you and your daughter well. I want to chime in with others who've tried to allay your guilt. My daughter's scoliosis wasn't caught until she was 16 (by a dance teacher). She was cleared by her pediatrician twice (at 13 and 15) and once in a school check (14) and was seen by an orthopedist who missed it (15). You're doing a good job by asking all these questions and learning as much as you can. I agree with those who have suggested getting a second (or third) opinion. We just got a fourth.

                            Comment


                            • #15
                              I've been lurking on these boards for a while, but after reading your post, I knew I had to respond. First, I have to agree with all the great advice you've received so far. I doesn't sound like your daughter's curve is an emergency yet, and I would suggest taking a bit of time to get several opinions. Do your research, and see a few more doctors before making a decision.

                              Second, please don't feel guilty about not finding her scoliosis sooner. I have scoliosis myself, and wore a brace for two years, and even I was late in discovering my daughter's curve. It actually turned out better for us, because her curve was unusually stiff for her age, and our surgeon told us that bracing would not have done a thing for her. They did several push x-rays, and where most kids her age (11 at the time) would see correction due to the pushing, her spine didn't budge. So, she avoided having to wear a brace for a couple of years, when the end result would have still been surgery.

                              Third, don't let other people scare you or make you question you decisions. It's like Pooka said, most people are completely uneducated on this subject, and will base their opinions on assumption and conjecture, rather than fact. There is still that perception with some that the surgery has not advanced in the past 30 years, and will require Harrington rods, with long-term recovery in a body cast followed by physical therapy, accompanied with the risk of flat-back syndrome or broken rods. Even my neighbor, who is a chiropractor, looked dumbfounded when I told her they don't use Harrington rods anymore (Kind of makes me wonder what kind of chiropractor she is, since she obviously isn't up to date on that subject.). You can choose to educate them, or ignore them, but don't let them get into your head, especially once you've made your decision about treatment.

                              Fourth, I have to tell you that my daughter is fused to L4, and last Thursday she tried out for, and made, her school dance team. I was just like you when I found out she would need to be fused that low, very worried about what it would do to her flexibility. I questioned her surgeon and his assistants incessantly about it, and they reassured me over and over that she would still have flexibility in her lower back, and at 4 months after surgery, she does. She still has some stiffness in her lower back and in her legs, but they have told us that will get better with time and lots of stretching. She can bend over a little more than 90 degrees, and can bend all the way over to tie her shoes from a sitting position. So, if it does turn out that your daughter will need to be fused to L4, don't lose hope for her future flexibility.

                              I know you are scared, and I would never tell you not to be. This is your baby girl! I was where you are a little less than a year ago, facing a much worse curve (At the time of surgery, she had a 89 degree thoracolumbar, with a 63 degree compensatory upper curve), with very limited choices for treatment. I was terrified, too. But, we were blessed with the discovery of an amazing surgeon, Dr. Richard Hostin in Plano, TX, who did everything possible to educate us and calm our fears. Now, 4 months later, and with the exception of some stiffness, a muscle spasm now and then, and a long scar down her back, you would almost never know she underwent such major surgery. She is a happy, healthy, beautiful 12 year old, and has told us several times she is so happy she had the surgery.

                              I send you the best of wishes during this journey. It is long, and stressful, and sometimes scary, but I know you will do whatever is best for your daughter.
                              Last edited by Karibeth19; 04-19-2010, 01:34 PM.

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