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Thread: Confused...

  1. #1
    Join Date
    Aug 2006
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    Lawrence, Kansas/ Overland Park, KS
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    Confused...

    OK I don't mean to post this over Trudy's threads. I just thought I'd put it up and see if I got any response.
    I had my bending xrays today and an appointment with my orthopaedic surgeon to discuss surgery. My bending xrays showed that I could get the top curve down to 24 degrees, and the lumbar could potentially fix itself to 4 degrees. The thoracic correction doesn't seem very good, do you think they would be able to fix it more in surgery than I can bend? (these from 42 and 32). I just don't know what to do. I know my curves aren't severe, and I don't want to rush into anything. I am uncomfortable or have a sore back almost constantly. I am only 19, and I want to go to med school, so basically either I have surgery within the next year or two, or wait 15 or 20 years. My doctor told me that it up to me, as he said that mine would be the smallest curve he's ever corrected. I've done tons of pain management, with little to no avail... and my back has progressed fairly consistantly from 25T, 23L when I was 14 and done growing. I just don't know what to do. My parents want to get another opinion, but I have a feeling that the doc would just say that same thing, that it's up to me, and i'd be right back where I am now.
    Some advice please?
    -From a confused and frustrated Abbie.
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

  2. #2
    Join Date
    Sep 2003
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    Hi Abbie...

    Only you know whether you can live with the pain. That, to me, would be the deciding factor. I do think your parent's idea of getting a second opinion is a good one.

    Good luck with your decision.

    Regards,
    Linda

  3. #3
    Join Date
    Aug 2006
    Location
    Lawrence, Kansas/ Overland Park, KS
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    i just don't know how to justify my pain... I've been living with it since I was 14 and I don't really know or remember any different. How do I know if it is bad enough? Pain is relative and it's hard to compare it to other people's because everyone has a different pain tolerance. I am not falling over in pain, but it is just uncomfortable and annoying. I am completely functional with it, I don't let it stop me from doing anything. My doctor today told me that only about 2/3 patients who have surgery for pain get the releif they wanted.
    correction on my original post, this today was actually the second opinion because my pediactric ortho that I have been going to since diagnosis referred me to him because he was not used to dealing with pain issues in someone done growing and almost out of his age treatment range. So I guess this was my first real opinion. sorry, I just confused myself.
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

  4. #4
    Join Date
    Dec 2006
    Posts
    48
    You might want to get one more opinion. One thing to know is that there are many individuals who have minimal pain, but progressive curves. Many people have surgery because of the progressive curve. If yours is progressive, having surgery while your young makes a big difference! You will be more flexible and your recovery time should be quicker when you are younger.

    Good Luck!

    P.S. You might find it helpful to read some of the suggested books on this site.

    Kari

    39 year old
    T-57 degree progressive
    surgery T-4-L-3 spring 2007

  5. #5
    Join Date
    Jul 2006
    Location
    Madison, Wisconsin
    Posts
    311
    You are right that it is difficult to judge pain levels especially when you have had the pain for so long. Quite a while ago I posted a thread that was entitled something to the effect of, "How do you know when pain is too much?" I apologize - I can't remember the name of the thread exactly, but it might be of help to do a search. I remember that people wrote a lot about their experiences and gave good advice.

    I wish you the best,
    Anya
    "You must be the change you want to see in the world."

    Previously 55 degree thoracolumbar curve
    Surgery June 5, 2007 - Dr. Clifford Tribus, University of Wisconsin Hospital
    19 degrees post-op!

    http://abhbarry.blogspot.com

  6. #6
    Join Date
    Aug 2006
    Location
    Lawrence, Kansas/ Overland Park, KS
    Posts
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    I'm just tired of feeling bent and scrunched up... I know I'd be ok without doing anything but it just bugs me to let it go and let my spine keep getting worse. I like the prospect of not being uncomfortable all the time but I don't know if I'd just be making it worse by messing with it.
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

  7. #7
    Join Date
    Sep 2005
    Location
    Sacramento,Calif.
    Posts
    420
    Hi Abbie,
    I had a 49* lumbar curve progressing 4* per year. What made me jump at the first opening my Dr. had open, was the pain. Sure you can do your daily activities but it effects how you live your life. For me I was unable to live my life as I wanted to and it was getting worse fast. It's NOT going to get better. I am almost at 1 year post-op (10 days to go!) and I can't believe how great I feel. I have some stiffness in the morning but this might be (According to my loving husband) due to my age, 44. I really feel it is due to my muscles still being stretched out on the (Previous) short side. I have read about a lot of recoveries in your age group and it is quick. This surgery is not something to take lightly, however it does change your life.

  8. #8
    Join Date
    Feb 2006
    Posts
    78
    How old were you when your curve was 49 degrees & it then progressed 4 degrees per year? How many degrees was your curve when first diagnosed?

  9. #9
    Join Date
    Sep 2005
    Location
    Sacramento,Calif.
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    420
    Abbie,
    I was diagnosed with a 23* curve that went to 49* in around 7-8 years. I know by the time I had surgery 5 months after my last measurements it was probably worse then 49*. I wasn't diagnosed untill I was 35 ish.

  10. #10
    Join Date
    Aug 2006
    Location
    Lawrence, Kansas/ Overland Park, KS
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    My doc told me that my fusion would likely have to be from T5 to L1 or L2, which is nice that my lumbar spine, for the most part, would be left alone. Is that considered a "long" fusion? I know it's fusing 9 or 10 vertebrae together, but i was just wondering compared to everyone else. Does anyone think that I would be able to get more correction than showed on the bending xrays, or how accurate are they, or what are your own experiences? My doc told me that my pain is probably "curve pain", and there was only a 2/3 chance that I would get relief from surgery. What is your opinion on this, or would I be trading my pain now for a different kind of pain? I understand right after surgery, but in the long run. How long did it take you to feel back to how you were before surgery at least?
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

  11. #11
    Join Date
    Feb 2007
    Location
    The Woodlands, TX
    Posts
    142

    Long fusion??

    Well, I havent had surgery yet, but mine would have to involve T3-4 through L 4-5. So, yes, yours would be long, but there are worse. So, I would count my blessings and give thanks.

    Ann
    44 year old female
    Surgery on Nov. 1, 2010
    Dr. Darrell Hanson, Methodist Hospital
    Posterior Only, 9 hours
    Presurgical: T 61 Degrees, L 58 degrees, with 15 degrees of thoracolumbar rotation
    Postsurgical: T 26, L 25

  12. #12
    Join Date
    Aug 2006
    Location
    Lawrence, Kansas/ Overland Park, KS
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    T3-4 to L4-5 is a lot longer than mine would be... FYI... The lumbar count up from the bottom 5-1, then thoracic 12-1, then cervical 7-1. So it would be (from the bottom) L5-L4-L3-L2-L1-T12-T11-T10-T9-T8-T7-T6-T5-T4-T3-T2-T1-C7-C6-C5-C4-C3-C4-C1.
    So, I would be fused in the red:
    L5-L4-L3-L2-L1-T12-T11-T10-T9-T8-T7-T6-T5-T4-T3-T2-T1-C7-C6-C5-C4-C3-C4-C1.

    And you would be fused approx. here:
    L5-L4-L3-L2-L1-T12-T11-T10-T9-T8-T7-T6-T5-T4-T3-T2-T1-C7-C6-C5-C4-C3-C4-C1.

    You prolly already knew that, thought i'd clarify...
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

  13. #13
    Join Date
    Sep 2005
    Location
    Sacramento,Calif.
    Posts
    420
    I'm with Ann. Some have way more fusion then you will. Remember the glass is 1/2 full not 1/2 empty. A positive attitude is the only attitude to have going in to this surgery and recovery. It will help you so much more then worry. You said yourself your "lumbar spine, for the most part, would be left alone" That is a good thing to remember.

    As for your pain question, I have no pain like before my surgery. I do have tightness on the side of my spine that had the shorter muscles due to my curve. I never felt back to how I was before surgery I was SO MUCH better right away! I felt good enough at 4 weeks post-op to start driving.
    Last edited by Suzy; 02-16-2007 at 02:15 PM.

  14. #14
    Join Date
    Aug 2006
    Location
    Lawrence, Kansas/ Overland Park, KS
    Posts
    195
    I don't think I'll eve be able to decide unless my spine collapses... I'd rather that not happen.
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

  15. #15
    Join Date
    Dec 2006
    Location
    Arkansas
    Posts
    45
    amae28,
    Iam a little behind on the post we have been busy.GET a second opinion.We actually got three.Only to find out our initial was inncorrect.I know how emotionally draining it is.But well worth it.We have no experience with surgery,my daughter is begging for it as she hates the brace.I have a friend whos sons girlfriend is 19 and just recieved surgery,she never had prior treatment for scoli.Her pain was becoming unbearable and dictating her life.To be so young my heart goes out.She is 2 weeks post op,although she is still not "up and running" she has told us she would do it all over again just for the peace of mind she now has.

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