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Thread: first surgery and scoliosis getting painful and making me scared

  1. #1
    Join Date
    Jan 2010
    Location
    United States / Florida
    Posts
    74

    Need help with questions about surgery!

    Hi Im Syd
    Im 13 and I have been through alot and i was born with a 59 degree curve and now it has increased by 30 degrees so its 89 degrees nd it will make me take a life risk because i just found out that I have a little worst than scoliosis and its called klipple fiel syndrome my surgen dr.nested,an all childrens hospital docter,is making me take all these cat scans and mri's and xrays sleeping tests because I am getting preped for surgery and i need some help how to keep my stress down and how to not think of the pain with myself and also the depression of my familys worrys I would really apprieciate someones help because I really need it before I get my back fused. Also I have questions for who had had experience or ideas what to do How will I feel after sergery ??? and will I be able to walk and move my arms? and the most important what kind of cast will it be?? and also how long does it take to heal??? Well those are most of my worries and I hope I can get some help Thank you for your time ! PLEASE REPLY I NEED THE ADDVISE
    Sincerly,
    Syd

    p.s
    I will update you guys on my docters appointment and tell you what happens and see what he will say about my cat scan and I hopr its something good too!!! (praying to god!)
    Last edited by Syd; 01-14-2010 at 10:18 PM.

  2. #2
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Syd, my heart goes out to you. This surgery is difficult to face at any age, but at 13, I can't imagine the turmoil you are going through. You are a good person to be aware and caring of the worry this is causing your family. It's perfectly natural to be worried and scared. We all were/are.

    However! The good news is, that the doctors are minimalising all the risks by doing all these tests so that you will know that on the day of surgery, they will be very well prepared and very knowledgeable about your case. Sounds like you're getting the very best of care. I think you're going to be very happily surprised at the great result you get.

    When is your surgery?

    There is a kids' forum somewhere and I am sure some other teens will stop by to talk to you and direct you to the site.

    Good luck Syd. You are not alone.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  3. #3
    Join Date
    Jan 2010
    Location
    United States / Florida
    Posts
    74
    Hey jennifer ,
    Thank you soo much you could not believe how much i have been going through but thank you lotts for support ! Also my surgery is march 24 and it is coming soon just a couple weeks But i am appriate all the care i am recieving because i heard alot of good things about this hospital i am visiting ! Have you ever heard of klipple fiel sydrome ? its just like scoliosis but worst?

    thank you from,
    Syd
    Last edited by Syd; 01-13-2010 at 04:59 PM.

  4. #4
    Join Date
    Jan 2010
    Location
    United States / Florida
    Posts
    74
    hey jennifer ,

    I have forgotten to ask you something would know if the brace really works?Again thank you for your help
    Last edited by Syd; 01-13-2010 at 05:00 PM.

  5. #5
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Hi Syd

    I'm really sorry to hear about your pain. I'm afraid you're way past the point of bracing, usually bracing is only prescribed for curves under 40 deg. The good news is that if you have surgery, it should relieve most of your pain since you're so young. You can see my daughter's pre and post op pictures in the link in my sig. She was 15 at the time of surgery.

    There is a support forum just for teens and kids, it's called Spinekids. Last time I checked, it was very active and you'll be able to connect with a lot of kids your age.

    Also, google Klippel Fells syndrome if you would like to find out more about your condition. I personally don't know anything about it.

    Good luck with your surgery.

  6. #6
    Join Date
    Jan 2010
    Location
    United States / Florida
    Posts
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    Hi sherie,

    Thank you for the advise ! Also what surgery did your daughter have? And what kind of cast did she have?

  7. #7
    Join Date
    Jan 2010
    Location
    United States / Florida
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    My mother says thank you for the support and the pictures we are having a rough time tring to find out about the sergery . The pictures really helped thank you!!

  8. #8
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    I'm very glad to help, there was no one in "real" life that we could talk to because this surgery is not so common. I found a lot of support on this forum.

    Sheena had a posterior spinal fusion, this is typical for teenagers but you would have to check with your surgeon. Your curves are pretty high so it's possible you will have additional procedures.

    She did not require a cast, in fact, most people do not get casted nowdays. Sometimes braces are prescribed after surgery but they're usually not necessary because the hardware is so stable nowdays. But again, you would want to check with your doctor, maybe he's doing something different for you. Has he told you you'll need a cast?

  9. #9
    Join Date
    Jan 2010
    Location
    United States / Florida
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    In the past they did when I was little but tomarrow im going to my surgen and he will be talking to me about my recent cat scan and I will be putting a thread out to tell how it went though .But I am deffently getting the fusion and said he had seen worse so that me feel a little better because he fixed them . thank you again for the support!

    sincerly,
    syd

  10. #10
    Join Date
    May 2009
    Location
    Adelaide, Australia
    Posts
    424
    Hey Syd,
    Welcome to the forum. Sorry to red about the rough time you are having. Sounds like you are receiving good care though. Its natural for people and their families to worry. My advice would be to take one day at a time, take care of your pain and think positive thoughts. All the tests they are running for you now, will help you and the doctors achieve a smooth surgery. I have a couple of questions - is your curve thoracic or lumbar? Has your doctor said how long your fusion would be?
    Vali
    44 years young! now 45
    Surgery - June 1st, 2009
    Dr David Hall - Adelaide Spine Clinic
    St. Andrews Hospital, Adelaide, South Australia
    Pre-op curve - 58 degree lumbar
    Post -op - 5 degrees
    T11 - S1 Posterior
    L4/5 - L5/S1 Anterior Fusion

  11. #11
    Join Date
    Jan 2010
    Location
    United States / Florida
    Posts
    74
    hi

    Thank you for the help ! and mine is both and its servical too (in my neck). but mine is mostly thoracic mostly but mine is very bad i have the worst kind of scoliosis its called (klipple fiel syndrome) and tomarrow my surgen will be telling me how long the fusion is going to be . Also i will be making a new thread to up date you and tell you what will happen hopefully something good!


    Thank you for your support,
    Syd

  12. #12
    Join Date
    May 2009
    Location
    Adelaide, Australia
    Posts
    424
    Good Luck with everything tomorrow. Let us know how you get on.
    Vali
    44 years young! now 45
    Surgery - June 1st, 2009
    Dr David Hall - Adelaide Spine Clinic
    St. Andrews Hospital, Adelaide, South Australia
    Pre-op curve - 58 degree lumbar
    Post -op - 5 degrees
    T11 - S1 Posterior
    L4/5 - L5/S1 Anterior Fusion

  13. #13
    Join Date
    Jan 2010
    Location
    United States / Florida
    Posts
    74
    okay I will thank you for your time

  14. #14
    Join Date
    Dec 2009
    Posts
    36

    Smile www.Spinekids.com

    Hi Syd,

    I would suggest you check out www.spinekids.com

    It's a kid friendly site for kids with questions about scoliosis. My son has read the whole site to answer his questions about his surgery this coming June. My son also has a nerve and muscle disease too that makes stuff hard too....lots of CAT scans and MRI's so he knows how tiring those tests are.

    John is a sports nut. What's your favorite sport? Who's your favorite team? Right now, John's into basketball and watching Univeristy of Michigan or Michigan State University. He also is looking forward to the start of baseball season....then he's a Detroit Tiger fan. We are glad that football for the Detroit Lion's is over since their season was bad.

    Don't forget to check out www.spinekids.com I guarantee you'll like it.
    Thoroughly disgusted with people in this group

  15. #15
    Join Date
    Jan 2010
    Location
    United States / Florida
    Posts
    74
    Thank you for giving me that idea to check out that site i appreciate it alot ! And also ya I have a hard time trust me. tomarrow im going back to the docter and usally there is not great news to hear but I believe there will be another miricle to happen because I know once it happened and that was because my docter thought I would be in a wheel chair all my life but guess what im not I am such a sports fan too haha I love basketball , football, and valleyball that is all I do is watch sports all day on the couch with friends )) My favorite team is for football would be the giants and the colts . They are awsome ! Also ya I have to have alott of xrays ha but I dont try to think of negative thoughts by thinking of things I enjoy doing like hanginig out with my friends and fishing . Do you like to fish ? I love to fish that is like my life insted of xrays and cat scans Do you like the colts ?

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