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Thread: Need guidance

  1. #1
    Join Date
    Nov 2006
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    3

    Need guidance

    My name is Dave, I am the father of a 13 year old daughter with idiopathic scoliosis (cork). We have seen (2) florida Orthopedic surgeons. All Childrens St Petersburg, and Miami Childrens. My daughter Courtney or cork as I like to call her, has a t56* and a L26* both the surgeon's have suggested surgey as the only option, and have dismissed yoga, chiropractic and other options. Concerned after looking at the apparatus suggested that future pain may arise? also concerned that the device may be visable after the surgey and she may get self conscious about it later. We are scheduled to see another orth in Orlando later this week. I have been reading many posts about Shriners, When we contacted Shriners Tampa they suggested Shriners Louisville for this type of surgery. Trying to make educated decisions without being educated. Trying to get some response from peoplke who have had this surgery as a child and are now older 10+ years post op. Was surgery the correct move?

    Thanks to all.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,019
    Hi Dave...

    You've posted in the adolescent and teen forums. You can find the Parents forum here:

    http://www.scoliosis.org/forum/forumdisplay.php?f=101

    Regards,
    Linda

  3. #3
    Join Date
    Nov 2006
    Posts
    3

    need guidance

    Linda:

    I was hoping to get responses from People looking at surgery options now and may have an opinion on other treatment types, and also from people who have been through. I am new to the site and will post a similar post on the adult side.

    Thanks

  4. #4
    Join Date
    Jun 2005
    Location
    Austin, TX
    Posts
    96
    sometimes I am frustrated with my rods because they limit some of my mobility, especially in yoga class, which I love to do and used to be very flexible, but I would never trade that for having the almost straight back I have now. You can hardly tell I even had the surgery, and that's only if I'm in a backless top or swimsuit. My curve continued to progress after the surgery, slightly when I went through my last growth spurt, so I can't imagine life without the rods, I'm sure that it would be really a really obvious curve.
    As far as pain goes, I'm sure I would have has some pain either way, but I have not had any major complications with my rods.
    Good luck
    Harrington Rods in 1991 at age 15
    Surgery at Scottish Rite in Dallas, TX

    Fused from T-4 to L-3

  5. #5
    Join Date
    Nov 2006
    Posts
    3

    need guidance

    Rachael:

    Thanks you for this information. How much curvature have you had since surgery? I am wondering about cork continuing to curve as she is only 13 and still growing. I have asked the doctors we have seen about waiting until she is 16 or so, but they don't think its a good idea. Well thanks again for the information it sounds like you are doing well.


    good luck.

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,019
    Quote Originally Posted by rachael
    sometimes I am frustrated with my rods because they limit some of my mobility,
    Hi Rachel... It's not just the rods that limit your mobility. If your fusion is solid, and your rods were removed, you would not have any more mobility than you currently have.

    --Linda

  7. #7
    Join Date
    Jun 2005
    Location
    Austin, TX
    Posts
    96
    yeah, that's what I meant, I think he could tell, it's just the slang I refer to my fusion for several various reasons...

    anywho, dadwithatwist:
    the doctor that compared x-rays from right after surgery to recent x-rays said it looked like about 10 degrees, but he did not measure. When I asked him about it, because I was under the impression that I would not progress after surgery, he explained that it was from my last growth spurt in my late teens (I was a late bloomer).
    When they scheduled me for surgery at age 15, I know that time was an important factor, but I don't really understand all of the details of why and how they decide when the right time is, so that is not something I can help you with. For me, I was braced for less than a year and the curve was progressing very quickly, even with the brace, and they decided and schedule me for and performed the surgery all within that year.
    hmmm, makes me wonder that even if I had waited another few years, if the correction would of just been less immediately after surgery.
    glad to help!
    Harrington Rods in 1991 at age 15
    Surgery at Scottish Rite in Dallas, TX

    Fused from T-4 to L-3

  8. #8
    Join Date
    Mar 2006
    Location
    Tulsa Oklahoma
    Posts
    59
    Hi dadwithatwist,
    I thought I would tell you our story. Shelby was in 6th grade when her scoliosis was discovered through a school screening. I was not that concerned because I have a slight curve that never required surgery so I assumed she would be like me. I took her to the pediatrician a couple of months later and was surprised to learn that her curves were 20T 24L at that time. We went to an ortho surgeon two months later and by that time her curves were in the 40s just in two months they progressed that badly. We put off her surgery until her ortho said we could not wait any longer. It was too late to brace her (I am thankful she did not have to go through that) so it was just a matter of time. He wanted her to get as much growth in her spine as possible. He told us that once a girl starts menstruating her spine is finished stretching so we were waiting for Shelby to start her period. We finally had to schedule surgery this past summer as her curves were 44T and 64L and she was starting to have difficulties breathing as her lung was being pressed on. He predicted that she would probably lose 1 1/2 inches in height in doing the surgery then but she gained 2 inches on the surgery table. She is very happy to have the surgery over with and is doing so well. I can't get over how straight her back is now. She turned 13 in October so she was 12 when she had her surgery. Her ortho said he didn't like to operate on someone that young with idiopathic scoliosis but we just couldn't wait any longer and compromise anymore organs. Hope this helps.

    Kathy
    Daughter Shelby 13y/o
    44T 64L Now 10T 10L
    Posterior Fusion T4 to L4
    June 19, 2006

  9. #9
    Join Date
    Oct 2005
    Posts
    178
    Unfortunately surgery is probably the only option. No amount of chiropractic, or exercise will stop the progression of the curve. What it is good for is increasing the flexibility of her spine which can make a big difference in the amount of correction that will be achieved. At this point, her curve is probably too advanced for bracing to have any effect on. Remember that bracing won't correct scoliosis, but hopefully it will slow, or halt it's progress until the child has completed the major part of skeletal growth. The problem here is that not getting the surgery could possibly lead to a much worsening curve which can not only lead to back pain but can affect the heart and lungs by compressing them. How much depends on how much the curve progresses. The problem in most cases is that the farther the curve progresses prior to surgery, the farther you will be from a straight spine in the end. I'm not going to tell you that the surgery is no big deal because it is, and it will be tough on all of you especially your daughter, but it's nothing compared to what she could have to deal with should she not have the surgery.
    Last edited by The Slice; 11-11-2006 at 05:51 AM.

  10. #10
    Join Date
    Sep 2006
    Posts
    8
    hi. very sorry to read about your daughter's condition. i dnt have much to offer as help but can only suggest a very good and reputable clinic, JD Health Care gives you access to information on: Allergies, Bone & Joints, Brain & Spine, Cancer Treatment, Cardiology, Dental Surgery, Dermatology, Eye Surgery, Plastic Surgery and more.

    You can contact them by requesting a free quote to learn more about their services and see if you may find help for your daughter.

  11. #11
    Join Date
    Sep 2006
    Location
    British Columbia
    Posts
    31
    has your daughter ever been to the SPineKids website? It's a great place for kids to give and receive advice.
    35T 54L rotation
    3rd TLSO brace
    shoe lift
    trunk shift,pelvic shift
    waiting for surgery!

  12. #12
    Join Date
    Dec 2006
    Posts
    3

    Eva

    Dadwithatwist

    I Am Also In Florida And Have Seen An Orth Surg In Orlando And In Miami Childrens Wich Will Be The One Doing Surgery On My 16 Yr Old Boy (60 Deg Curve). Shufflebarger Out Of Miami Childrens I Have Been Told He Is A Great Doctor. He Also Did My Nephew @ 5 Yrs Ago. He Is Doing Great And Has Had No Problems With The Surgery. Besides A Light Scar Everything Looks Great And He Works Out And Does Everything Normal He Is Now 24.

    The Only Problem We Have Noticed With Him Is He Also Had A Leg Shortend There A Miami Childrens With Another Doctor (dont Know Name) As He Was Told He Was Done Growing. The Family Has Noticed A Slight Limp Again.

    My Son Has Been Fitted With Inserts For His Slight Off On The Leg Lenght Difference.

    Good Luck With Your Daughter I Now Pray For All Childrens Health As I Now Understand This Feeling.

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