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  1. #1
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    Jan 2014
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    Surgery at 13; Now 26

    Hey guys,

    So I have a few questions and was hoping some of you could help! So I am 13 years out of my surgery and have some questions. I don't know if this is the right forum to put it on but here goes nothing. I had surgery a while ago and now I am looking to my future. I do not have much pain right now.

    I am very scared as to what my life is going to look like when I am 70, 80 years old. Is there any way I am going to be able to walk? Or live without pain?Everything that I had read has been of people having pain and ending up disabled. This is something I want to avoid at all costs. I am a very active person. I love doing anything outdoors and want to continue to do this.

    Please help with some positive outcomes. Please and Thank You.

  2. #2
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    Jan 2008
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    NC
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    Quote Originally Posted by Camilynns View Post
    Hey guys,

    So I have a few questions and was hoping some of you could help! So I am 13 years out of my surgery and have some questions. I don't know if this is the right forum to put it on but here goes nothing. I had surgery a while ago and now I am looking to my future. I do not have much pain right now.

    I am very scared as to what my life is going to look like when I am 70, 80 years old. Is there any way I am going to be able to walk? Or live without pain?Everything that I had read has been of people having pain and ending up disabled. This is something I want to avoid at all costs. I am a very active person. I love doing anything outdoors and want to continue to do this.

    Please help with some positive outcomes. Please and Thank You.
    Hi and welcome.

    Where did you get the idea you might not be able to walk at any point or that you will have pain and be disabled? Did a chiropractor tell you that? Ignore chiros. Just deal with experienced surgeons.
    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."

  3. #3
    Join Date
    May 2008
    Location
    reno,nevada
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    No, no, no.....Camilynns, you shouldn’t think that way! Never expect or assume the worst. Worrying about things like this are not worth it. Knowing and worrying are two different things. Override the negatives with positives.

    Life is about having fun.....I have always loved life and always did everything I wanted to do... with twin 70 degree curves or with a T2-pelvic fusion along with 2 herniated cervical discs. I don’t worry about fusing my neck, I worry about how much fun I can have as soon as I can. I hope this makes sense.....

    Do you remember what levels they fused?

    Welcome to the forum...Ask any questions you like.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #4
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    Jan 2014
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    Quote Originally Posted by titaniumed View Post
    No, no, no.....Camilynns, you shouldn’t think that way! Never expect or assume the worst. Worrying about things like this are not worth it. Knowing and worrying are two different things. Override the negatives with positives.

    Life is about having fun.....I have always loved life and always did everything I wanted to do... with twin 70 degree curves or with a T2-pelvic fusion along with 2 herniated cervical discs. I don’t worry about fusing my neck, I worry about how much fun I can have as soon as I can. I hope this makes sense.....

    Do you remember what levels they fused?

    Welcome to the forum...Ask any questions you like.

    Ed
    I have all levels fused from C1 to pelvis. Scar from the tip of my back all the way down to pelvis. I have just read so many stories and it scares me so much. Thank You I cant ever really talk to anyone about this.

    What does twin 70 degree curves mean? And when did you have surgery and how old are you? I have just never heard a story like mine.

  5. #5
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    Jan 2014
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    Quote Originally Posted by Pooka1 View Post
    Hi and welcome.

    Where did you get the idea you might not be able to walk at any point or that you will have pain and be disabled? Did a chiropractor tell you that? Ignore chiros. Just deal with experienced surgeons.
    I have just read so many scary stories and want to live a full body abled life :/

  6. #6
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    Jan 2008
    Location
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    Quote Originally Posted by Camilynns View Post
    I have just read so many scary stories and want to live a full body abled life :/
    Where did you read these stories?

    Are you fused from the top of your neck to your pelvis or the top of your back (T1) to your pelvis?

    If you have a solid fusion, does your surgeon expect anything to change? I don't see how it could. People with full fusions are the few people who will escape degenerative disc disease with is inevitable if you live long enough. So you might have LESS pain than non-scoliotic people, about 85% of whom have back pain so bad at some point in their life that they are driven to a doctor. So not having scoliosis or a fusion is no guarantee of having no pain in the out years.
    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."

  7. #7
    Join Date
    Jan 2014
    Posts
    11
    Quote Originally Posted by Pooka1 View Post
    Where did you read these stories?

    Are you fused from the top of your neck to your pelvis or the top of your back (T1) to your pelvis?

    If you have a solid fusion, does your surgeon expect anything to change? I don't see how it could. People with full fusions are the few people who will escape degenerative disc disease with is inevitable if you live long enough. So you might have LESS pain than non-scoliotic people, about 85% of whom have back pain so bad at some point in their life that they are driven to a doctor. So not having scoliosis or a fusion is no guarantee of having no pain in the out years.


    I am fused from the top of my back. so T1 I guess, I have tried to get information from my doctors but it has been so long ago I do not even know how to find it. But no I don't think anything is expected to change I have just read random stories online. But I was so young, I dont remember half of what my doctor told me. I already have not been able to do things I want in life like skydiving, rugby, and others bc of this I just dont want to end up having chronic pain bc of this. The scoliosis was not genetic supposedly but my youngest sister also had to go through with this. I also think about if I want kids one day how this is going to affect me.

  8. #8
    Join Date
    May 2008
    Location
    reno,nevada
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    4,104
    I had a 70 degree thoracic curve and a 70 degree lumbar curve. A perfect S curve.

    I had my surgeries in January 2008 when I was 49. I’m now 55 and feel like I’m 39. You realize that I DO get around 5 years at age 39 don’t you? (smiley face) Many full fusion scoli’s coming out of the woodwork these days because of these forums. I was diagnosed 40 years ago. Its good to see you posting.

    You can talk to any of us here, this is a scoliosis forum. SOS is a great scoliosis forum also, I post there as “Rod Stewart” since Jose Cuervo was taken. You can also PM any of us if you want to chat in private.

    Did you have this very impressive surgery done at age 13? Where was it done? and who did it? Would love to see your x-rays.

    We do have the advantage of not having to worry about our discs failing in our fusions. We will never have to deal with this anymore.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

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