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Thread: Scheurmann's Kyphosis

  1. #1
    Join Date
    Feb 2007
    Location
    Florida
    Posts
    1

    Unhappy Scheurmann's Kyphosis

    I just had my 14 year old daughter at the Shriner's Hospital in Tampa, FL with what we thought was Scoliosis. She does have a minor case of Scoliosis, however, she has what they believe is Scheurmann's Kyphosis. She is in quite a bit of pain most days, some days to a point that it takes her breath away. Kids call her 'Hunchback of Notre Dame' which is extremely cruel and has her hating school. The Shriners have us going back to Tampa March 7 for an MRI and a consultation with Dr. Grogen to see what our options are. I've read about a couple of different surgeries that can help and I was wondering if there was anyone out there who might be able to give me some insight on what we can expect or what we should do, or even if there is anything I can try to help eleviate some of her discomfort. I'm so confused and have no insurance so I'm praying the Shriner's can help, they've been so awesome so far.

  2. #2
    Join Date
    Jul 2006
    Location
    Idaho Falls
    Posts
    17

    Scheurmanns Kyphosis

    My 16 year old son had surgery August 14th, 2006 to correct his Scheurmanns Kyphosis. He is fused from T3 to L3 with two titanium rods. He spent a week in the hospital. Once home he did wonderful. His bedroom is 20 steps down from the main floor and he was able to manuver them very well. He took very little pain meds. Didn't need any after two weeks. He just had his 6 month appt. with his doctor and everything looks great. He will not have to see the doc again for a year. The doctor gave him the green light to snow board and snowmobile again. His curve was about a 74 degrees and is now 40. He looks wonderful. Good Luck. Kelly

  3. #3
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    You can also do a search on this site for Scheurmann's kyphosis. There have been several threads on the topic. Best wishes.
    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/

  4. #4
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Erika,
    I have two daughters with Scheurmann's Kyphosis. My oldest daughter had a lot of the same issues at school. She was teased so bad that she even ended up with a drug abuse problem. She had surgery at 15 years of age, Shriner's Portland gets the credit for the incredible job. Today, at the age of 18 1/2, she is doing incredible, straight back, no drug abuse problem because she feels good about herself now, and can do everything she wants, except bungy jump (which she no desire to do). My daughter was fused from T2 to L2 and just as functional as always. There are somethings she had to retrain her self to do, like bending. Her back doesn't bend because of the fusion and rods, so she had to learn to bend at the hips instead. My daughter had a lot of pain too. The one thing we did, but doesn't correct the problem, was take her to the Chiro to just releave the muscle tension. But, remember that Chiropractic WILL NOT cure the problem, but can releive some pain.

    You made an excellent choice with Shriners. If you have any questions feel free to call your doctors nurse. They are always good about returning calls and easing your fears. I used to call my daughters doctors nurse in tears from just fear.

    We had insurance and used Shriners simply because we wanted the best doctors in the world working on our kids.

    Our youngest daughter was braced for her Scheurmann's Kyphosis, for 18 months. She is now brace free and doing everything she did before a brace. She was allowed to continue her sports with her brace. We just scheduled her time out of it during practices and games.

    Your confusion is very normal and you've come to the right place for encouragement.

  5. #5
    Join Date
    Jan 2007
    Posts
    28

    Unhappy

    We too found out 12/2006 that my daughter has not only Scoliosis, but Kyphosis too. I was shocked to say the least. Have you found any info out about it? Most of what I'm reading is about Scoliosis. Skylar was at 42 degrees in April 2006...and 62 degrees in Nov 2006. We are going to the ortho this Friday to see where she is at. I was told surgery is talked about at 70 degrees. Have you come across any support groups that deal with Kyphosis? I have so many questions and am scared silly. Skylar is now 15 but 2 years ago she had a brain tumor removed and suffered a massive stroke. She has left sided paralysis/weakness and is in a wheelchair although she did learn to walk short distances. I am concerned about what surgery will do to her or for her. Skylar also has a blood clotting disorder and diabetes. We were hit with a lot of stuff from the tumor but this Kyphosis/scoliosis makes the brain tumor seem laughable. Skylar had to quit PT because of the pain in her back and has issues with breathing at times....so I know we won't have a choice. Any advice would be greatly appreciated. If surgery has to be done (She won't tolerate bracing which we were told wouldn't help her), then it will have to be done by Dr. Reynolds at Childrens Hospital of Michigan....because it's not only her back but she now has about 14 other specialists and many health issues (no pituitary gland is another). She has not started her period due to this until hormone replacement is started fully. So I worry about growth plates.

    Sorry this is so long winded...looking for some answers.

    Melanie
    Skylar's mom

  6. #6
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    My 15 y.o. daughter also has Kyphoscoliosis (both Kyphosis and Scoliosis) and is 2 years post-op. When Jamie had her surgery, her Scoliosis was 46* and her Kyphosis was 71*. If there's anything I can help you with, feel free to ask.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  7. #7
    Join Date
    Jan 2007
    Posts
    28
    Hi Mary Lou,
    Can you tell me if surgery helped with the pain? We were told that they don't know if surgery will help with that or not. Skylar saw her ortho yesterday and she is at 70 degrees, so surgery has been scheduled for June 12th. We are going for it because she'll need it eventually and I want her to have the best correction possible.

    Thanks,
    Melanie

  8. #8
    Join Date
    Dec 2005
    Posts
    4

    Scheurmanns Kyphosis

    Our 16 year old son also had surgery last summer (curvature was 99 degrees) and is basically back to full activities. His experience was very similar to Kelly's son in that he was on pain meds for only a short time, was able to walk up stairs to his second floor bedroom on the day returned from the hospital and the correction and transformation in him has been incredible.

    His surgery was done at Shriner's in Philadelphia so your concern about insurance, etc is a moot point when you work with them. And in our experience, you won't find a more experienced and caring staff.

    Steve

  9. #9
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Melanie,

    I am so sorry I missed your question! Jamie never had any pain which isn't uncommon.

    How are you feeling? I know the weeks before surgery are VERY stressful. Please know that you aren't alone in this. Everyone on this site is here to help you through this.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  10. #10
    Join Date
    Jan 2007
    Posts
    28
    Hi Mary Lou,
    I'm glad to hear Jamie didn't have any pain. I've heard conflicting stories of no pain before, pain after, etc... I guess everyone is different. Right now Skylar has a great deal of pain, so I know we don't have a choice. I think we all second guess ourselves. I'm scared for different reasons then most in this group. Skylar has a blood clotting disorder, is diabetic and has numerous other health issues due to a brain tumor that was removed. Anyhow, I'm keeping busy. The community is having a fundraiser and we are busy with that....a whole different kind of stress. It is taking my mind off the surgery, which is good. When I do have the time to think about it I'm very, very scared. I think I will have to be sedated somehow to get through that day. There is a part of me that knows she is fragile and might not even make it through....and I question myself if I'm putting Skylar in harms way by doing this, but as soon as I hear her cry in pain....I know I don't have a choice.

    Anyhow, thank you so much for getting back to me. I will post periodically and will keep you informed how it goes. She is scheduled for June 12th.

    Melanie

  11. #11
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Melanie,

    I can't imagine the stress you are feeling. I understand the usual stress, but to deal with diabetes, etc. on top of surgery...well, that's a lot. Please try not to second guess yourself. It only wears you down and you can't afford that right now. I'm sure you've done your homework and your surgeon (and other doctors) is aware of her medical issues. Besides praying, that's all you can do.

    Deciding to let Jamie have her surgery was the hardest thing I've ever done, but I haven't regretted it for one minute. I see the beautiful young lady she is today and I'm glad she had the surgery. I can only imagine what her back would look like just four years after diagnosis let alone what she would look like and what health issues she would have years from now.

    Will you have family or friends with you the day of surgery? If you haven't thought about that, please make sure you aren't waiting alone. It will be a long day and it is helpful to have others there with you.

    Feel free to e-mail me at Spinesupport05@aol.com anytime.

    My thoughts and prayers are with you.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  12. #12
    Join Date
    Jan 2007
    Posts
    25
    Hi

    I sometimes visit an english website that has a forum dedicated to kyphosis. They have some members who have had surgery for sheuermann's. If you search in the forum you can find some first hand accounts of surgery for sheuermann's which may be of some interest to

    The following is a link to the forum

    http://www.scoliosis-support.org/mod...=&showforum=21

    or the website address is

    scoliosis-support.org

    I hope it may be of some to you

    z

  13. #13
    Join Date
    Jan 2006
    Posts
    513
    I have a friend that took her son to Montreal to try the Spinecor brace for his Sheurmann's kyphosis. He was only the 4 th patient that they had tried it on, but his kyphosis that was, I think 70 something degrees, has corrected to 47 in about 3 months. Four out of four is not impressive as a group, but the odds are good. I know it is not a sure thing, but I would want to know my options.
    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.

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