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Thread: Daughter Diagnosed with Scoliosis

  1. #1
    Join Date
    Oct 2003
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    Gonzales, La.
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    Question Daughter Diagnosed with Scoliosis

    Hello, My 13 year old has been diagnosed with scoliosis. 50% Thorasic and 36% lumbar. From what the Doctor said, she will need to have surgery soon. He stated that she is too far advanced for a brace. With the numbers shown I am wondering if anyone familiar with these numbers. How bad are they, should I get a second opinion. I was unable to attend the appointment for her first visit, thus I curious. We plan on making another appointment with a surgen today.

  2. #2
    Join Date
    Sep 2003
    Location
    Austin, TX
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    Hi Steve,

    Your doctor is probably right that those curves are too advanced for a 13 year old for a brace to do any good. Nonetheless, I would always advise getting a second opinion.

    A 50 degree thoracic curve is generally considered the threshold at which surgery becomes the only viable option, because statistically the probability of that 50 degree curve progressing until she finishes growing--and probably well beyond that--is very high.

    I think the real issue is how close your daughter is to finishing her growth spurt. Most importantly, you want to find out how "skeletally mature" she is. This can be determined by taking an x-ray of the top of her pelvic bone and looking at something called the risser sign, a formation of bone on the top of the pelvis that indicates bone maturity. If she's even close to finishing growing (possible for a 13 year old girl), you might want to postpone surgery and evaluate how far the curve progresses, if any, in the next year or two. Scoliosis surgery is never urgent, so waiting a few years isn't an issue unless she starts experiencing pain related to the curvature.

    Also, you want to be sure your daughter is being evaluated by a true scoliosis expert affiliated with the Scoliosis Research Society. You can find a directory of SRS orthopedists here:

    http://www.srs.org/locator/

    Dave

  3. #3
    Join Date
    Oct 2003
    Location
    Gonzales, La.
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    Thanks Dave, The Doctor that my wife spoke to yesterday acted as though we need to move quickly. I think the Doctor that he wants us to see is Dr. Andrew King in New Orleans, La. He is on the link that you sent me. We are suppose to set up an appointment with him soon. I will keep you posted.
    Last edited by Steve Barlow; 10-08-2003 at 02:25 PM.

  4. #4
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    Oct 2003
    Location
    new jersey
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    I would suggest taht if you plan to wait long, you ask about bracing in the meantime - this is the period of greatest curve progression because of the rate of growth at this age. Surgery can correct, to a degree, but the worse the curve, you can get proportionately less correction with surgery.

  5. #5
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    Oct 2003
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    Gonzales, La.
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    Thanks, it appears like it is getting worse as we watch her. We have an appointment with a Dr. King in mid November. Someone told us about a doctor Bennet at the Tulane Medical Center in New Orleans. I plan on trying to get an appointment with him before the November appointment. We really would like 2 opinions before we decide which way to go. Thank you for replying.

  6. #6
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    Sep 2003
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    Austin, TX
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    Group member hballin suggested you consider bracing, but I'm highly confident any orthopedist will tell you that bracing will not arrest the progression of a curve that is already as advanced as your daughter's. Surgeons vary on their cutoffs, but in general only curves below 40 degrees will be braced. 40-50 degrees is something of a gray area, but if your daughter is already at 50 degrees thoracic, the probabilities are undeniably high that her curve will progress whether braced or not.

    Also, for what it's worth, my surgeon is good friends with Dr. King and has mentioned to me a few times that he's excellent surgeon.

    Dave

  7. #7
    Join Date
    Oct 2003
    Location
    MO
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    Hi Steve,

    Dave has given you some very thorough and wise information. His information is pretty accurate from what I have learned over the past 30 years from having lived with Scoliosis.

    However, I wish to provide you with some thought as I come from a slightly different angle in sharing with you my experience.

    I am currently 43 years old. I was diagnosed at age 14 with curves measuring exactly as your daughter's...50 degrees thoracic and about 36 degrees lumbar. I had three doctorsí opinions before treatment was decided on in my case. The first doctor wanted to do surgery...the second suggested a brace. Because of their conflicting opinions, my parents sought a third opinion from a highly recommended Scoliosis specialist and he, being very conservative in his approach, suggested that we try the Milwaukee brace first and it that didn't work, then we would consider surgery at a later date.

    Well, I may be a rarity for one with curves of this magnitude, but the brace did for me what it was suppose to do. Because I was not skeletally mature (just at the beginning of my growth), it was not absolutely sure the brace would be successful. But during the 3 1/2 years that I wore it, my curves improved down into the mid 30 degree range while wearing the brace. But upon weaning from the brace at age 17, my curves slipped back to where they had started. Being skeletally mature at age 17, the doctor thought that I would not progress any further. Well, fortunately I did not...at least for the next 20 years.

    I continued to regularly see my Scoliosis doctor about every 5 years after age 17 and my curves remained stable. At about age 37, my thoracic curve had mildly progressed to 55 degrees...a very slow progression over a five-year period. It wasn't until then that my doctor brought up the subject of the possibility of still doing surgery. I pondered over the thought and made a decision about a year later to go ahead and have the surgery in hopes of halting the possibility of any future progression. I had no pain to speak of before my surgery. My decision was made on the possibility of future progression. So I had surgery for my Scoliosis in February 1998 at the age of 38. It was a success. I had a very quick recovery for one my age. I was fully functional again after about 5 months post-op. I have no pain or lack of functionality today. I have no complaints.

    I am grateful I waited until the time I did to have surgery as I have heard and learned of many who have had complications years later from the type of rod they used in the early 70's...the old single, straight 2 dimensional Harrington rod...it was used to "jack up" the spine with only 2 hooks, one attached at the top and one attached at the bottom. Many who had the Harrington rod are suffering today from Flatback Syndrome caused by the Harrington rod.

    I count myself lucky and am very thankful that I chose not to have the surgery back then. I am thankful for the way technology has advanced over the years to be able to give me the stability of the rods I have in my back today...a 3 dimensional dual rod system...Isola rods instrumentation.

    So with all of the above said, it still might be wise to try a brace first and definitely if there is rapid progression within 3 months after having been in the brace, I would recommend surgery. But if the brace is able to bring the curves into a lower degree range, I would continue to pursue the brace unless further progression indicates otherwise.

    Anyway, I'm sure the position you are in is not an easy one. Like it has been said, curves between 40 and 50 degrees are in a gray area. It is hard t know exactly which direction you should go. I do wish you the best of luck in making a good decision, the best decision for your daughter.

    Thanks for allowing me to share from my success.

    Vicky

  8. #8
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    Oct 2003
    Location
    Gonzales, La.
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    Thanks Vicky,
    We had an appointment with another Dr. yesterday in New Orleans. He feels that surgery is a must on my daughter. He requested that we bring her back for more x-rays and testing. What he is telling us is that he will only do the surgery on one of the curves. Thinking that the surgery will compensate the other curve and not make it so bad. We are not exactly sure what to do at this point. We have another appointment scheduled with a Dr. in mid November. But in talking with him, I do not know if we should wait. My daughter is on a dance team and they have competition in Febuary. He stated that this is too long to wait as she is still growing. He did mention the risser on the x-ray and estimated that her curvature is increasing at about 3degrees per month. We want to do whats best for our daughter, but the more I read, talk to people, and Doctors, the more confused I get.

    Thanks,
    S. Barlow


  9. #9
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    Oct 2003
    Location
    montebello
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    Dave, Steve, everyone on this forum: we are going through similar questions - you will see my question about the growth spurt and what that does to the relative measurements of her body in the long run. We are in California and must go through Kaiser Permanente (Hollywood) and the chief of staff is going to take care of her. I just feel we might be rushing - especially after reading in your posts that "there is no hurry about scoliosis surgery"...... maybe I'm the one that's rushing. The doctors told us to wait until we are absolutely comfortable with this surgery.
    Anne

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