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Thread: "Can't fix your appearance"

  1. #1
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    May 2012
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    Unhappy "Can't fix your appearance"

    So this was heartbreaking and depressing news my doctor gave me. I'm sick and tired of living with the very visible curve. I've been looking forward to the surgery hoping for some degree of correction. Health benefits are fantastic, but ya know.. I'm just sad. It's hard to look forward to this.

    I've been overwhelmed with bouts of depression and I tried to look forward to this. that maybe a positive change would be the inspiration I need...because I need inspiration.. but I'm just stuck. I'm overwhelmed with the thought that "I just can't take the sadness anymore".

    Doctor just says there's not lot of flexibility in my main curve and he's afraid trying to correct it would paralyze me.
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  2. #2
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    Quote Originally Posted by thesteelsage View Post
    So this was heartbreaking and depressing news my doctor gave me. I'm sick and tired of living with the very visible curve. I've been looking forward to the surgery hoping for some degree of correction. Health benefits are fantastic, but ya know.. I'm just sad. It's hard to look forward to this.

    I've been overwhelmed with bouts of depression and I tried to look forward to this. that maybe a positive change would be the inspiration I need...because I need inspiration.. but I'm just stuck. I'm overwhelmed with the thought that "I just can't take the sadness anymore".

    Doctor just says there's not lot of flexibility in my main curve and he's afraid trying to correct it would paralyze me.
    Hi

    Sorry to hear your so upset.

    Where are you based? have you sought a second opinion? I read about a girl in America with a double curve similar to mine, they operated and when they slowely undid the curve it trapped a main nerve and she couldn't move her legs they kept slowly moving and playing with the spine until it didn't trap the nerve and she got amazing results. I would definately suggest seing another surgeon.

    I don't know how to download pictures onto here yet but my top curve looks like yours it just goes out further.
    I had surgery when I was 13yrs old to correct my lower curvature. It didn't correct my top curve but that didn't get worse so they left that one. I then had a costioplast operation to reduce my rib hump and now my top curve has gone from approx 20-30 degress to 104 degrees so I'm awaiting full fusion.

    Whilst everyone is different I'm told by my surgeon that he is hoping to reduce my curves to at least 40 degrees. I had some bending and stretching xrays done and they show when I am stretched my curves decrease by approx 20 degrees on there own. Have you had any of these xrays done? Hopefully if you have these it will show there is room for improvement of your spine.

    Don't give in, stay positive and keep smiling.

    Jenna x
    27 yr old Female.
    Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
    Now the proud owner of a very straight spine. T1- L5 fusion.
    Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

  3. #3
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    Oct 2008
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    Sunshine Coast, Queensland, Australia
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    Whilst I don't know enough about it to say positively, I think you should be able to expect some improvement and I believe a second opinion is definitely warranted. I don't know of anybody on this forum who's had the surgery who has had no cosmetic benefit. Most of us have vastly improved appearances and I'm sure you're not the only one with very little flexibility. Don't lose hope. Get at least one more opinion if you possibly can. Perhaps your current doctor doesn't feel confident in trying harder to get you some cosmetic improvement. How many of these surgeries does he do, would be one of my questions. This is a very important question for anybody seeking this surgery.

    Wishing you the very best of luck!
    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

  4. #4
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    Feb 2011
    Location
    Lilburn, GA
    Posts
    201

    Flexibility

    I'm a little surprised that the surgeon does not want to do the surgery because your spine isn't flexible enough. My surgeon told me mine wasn't flexible at all and I had the surgery with good results.
    50 years old!!!!!
    Wore Milwaulkee Brace 1976-77
    Original curve 36 degrees ( measured in the 70s)
    Advanced to 61 degrees 01/2011
    Surgery 07/11/2011
    Fused T1-L2 (curve now in the 20s!)

  5. #5
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    Jul 2011
    Location
    Nashville, TN
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    161
    I was also told my spine was not flexible by more than one Dr. You definitely need to seek more opinions.
    Pam, age 49
    Thoracolumbar curves 80 and 40 corrected to 20 degrees
    April 20, 2012 surgery with Dr. Lenke
    T-3 to sacrum

  6. #6
    Join Date
    May 2012
    Posts
    14
    Quote Originally Posted by Jenna.KB View Post
    Hi

    Sorry to hear your so upset.

    Where are you based? have you sought a second opinion? I read about a girl in America with a double curve similar to mine, they operated and when they slowely undid the curve it trapped a main nerve and she couldn't move her legs they kept slowly moving and playing with the spine until it didn't trap the nerve and she got amazing results. I would definately suggest seing another surgeon.

    Whilst everyone is different I'm told by my surgeon that he is hoping to reduce my curves to at least 40 degrees. I had some bending and stretching xrays done and they show when I am stretched my curves decrease by approx 20 degrees on there own. Have you had any of these xrays done? Hopefully if you have these it will show there is room for improvement of your spine.

    Don't give in, stay positive and keep smiling.

    Jenna x
    Thanks.

    It's getting the best of me. I've attached a lot of hope to this and ya know.. it's tough.

    I'm in Arkansas US. I'm not sure how tolerable my Medicaid (disability insurance) will be about a second opinion. I'm afraid to make waves. It also took me 7 months to get to this appointment, because of Medicaid approval and from what I can find, noone in Arkansas is really talked about for scoliosis expertise.

    Quote Originally Posted by JenniferG View Post
    Whilst I don't know enough about it to say positively, I think you should be able to expect some improvement and I believe a second opinion is definitely warranted. I don't know of anybody on this forum who's had the surgery who has had no cosmetic benefit. Most of us have vastly improved appearances and I'm sure you're not the only one with very little flexibility. Don't lose hope. Get at least one more opinion if you possibly can. Perhaps your current doctor doesn't feel confident in trying harder to get you some cosmetic improvement. How many of these surgeries does he do, would be one of my questions. This is a very important question for anybody seeking this surgery.

    Wishing you the very best of luck!
    I believe he's pretty new. Noone talks about him on the internet, and he joined his partnership last year. However, he trained with, and under, Dr. Lenke as well as another prominent spine surgeon.

    Quote Originally Posted by Marina63 View Post
    I'm a little surprised that the surgeon does not want to do the surgery because your spine isn't flexible enough. My surgeon told me mine wasn't flexible at all and I had the surgery with good results.
    Oh, he's willing to do the surgery, he wants to preserve my health (which I do as well) he just said he doesn't think there's much at all he can do for the shape of my spine, fearing that he might paralyze me/otherwise damage my spine, if he tries to do too much. I appreciate his position, I'm just disappointed.

    --------------------

    Thanks to everyone. I've had a rough time. I don't blame my doctor and appreciate his stance, but this was pretty crushing news.

  7. #7
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Steel--
    Why don't you see if he'll send your records & xrays to Dr. Lenke and get his opinion? Any good doctor should be more than willing to help you get additional opinions. My local surgeon made me a whole packet with copies of all my records and digital xrays and gave me contact info for three additional surgeons to consult.

    What is your degree of curvature? Dr. Lenke said mine was stiff (it appeared that was on bending films), so he told me to expect about 50% correction. He actually got quite a bit more than that. I wouldn't count on perfection, but I would be surprised if you don't get at least some correction. I would definitely consult Lenke and maybe some surgeons in Texas. You might be able to send them files and get an opinion without actually seeing them the first time. Best wishes! Don't give up!!!
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  8. #8
    Join Date
    May 2009
    Posts
    3,745
    Ev, do you know what insurance Dr Lenke accepts...?
    does he take Medicaid?
    just wondering...
    i saw surgeons who did not accept Aetna when
    i went to see them, and i paid cash for the consults...

    jess

  9. #9
    Join Date
    May 2012
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    14
    Quote Originally Posted by Confusedmom View Post
    Steel--
    Why don't you see if he'll send your records & xrays to Dr. Lenke and get his opinion? Any good doctor should be more than willing to help you get additional opinions. My local surgeon made me a whole packet with copies of all my records and digital xrays and gave me contact info for three additional surgeons to consult.

    What is your degree of curvature? Dr. Lenke said mine was stiff (it appeared that was on bending films), so he told me to expect about 50% correction. He actually got quite a bit more than that. I wouldn't count on perfection, but I would be surprised if you don't get at least some correction. I would definitely consult Lenke and maybe some surgeons in Texas. You might be able to send them files and get an opinion without actually seeing them the first time. Best wishes! Don't give up!!!
    He plans to consult with Dr. Lenke and one of his other partners. His decided certainty that my curve was too stiff worried me. It didn't worry me about him, it worried me about me. He seems like a great and informed doctor, but as he's the one that will actually have his hands on me, his opinion of what can be done for me will have the most weight.

    Absolutely, I don't expect perfection . It'd be nice but it's unrealistic.

  10. #10
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    May 2012
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    14
    Quote Originally Posted by jrnyc View Post
    Ev, do you know what insurance Dr Lenke accepts...?
    does he take Medicaid?
    just wondering...
    i saw surgeons who did not accept Aetna when
    i went to see them, and i paid cash for the consults...

    jess
    Medicaid acceptance is per-state. Dr. Lenke does not accept Arkansas Medicaid, and referred me to Dr. Kelly. I can't say whether Dr. Lenke accepts say Missouri or Illinois Medicaid.
    Last edited by thesteelsage; 06-08-2012 at 09:06 PM.

  11. #11
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,548
    I always knew that some day, somehow, I would have my surgery or surgeries....I had doctors shake their heads years ago saying its too dangerous, but I never lost hope. There is someone out there that can do something for you.

    I thought about moving, about insurance, all of it. I was welcome to change.

    Dr Pashman did Pilar.....She had no insurance, and she was serious.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,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

  12. #12
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    May 2008
    Location
    reno,nevada
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    3,548
    Here it is

    Now, I have the PCIP insurance launched by President Obama for people like me with no insurance coverage due to pre-existing conditions. This health plan covers my surgeries, yes, 2, anterior and posterior.

    http://www.scoliosis.org/forum/showt...gery-scheduled!

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,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

  13. #13
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,548
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,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

  14. #14
    Join Date
    Oct 2011
    Posts
    18

    Surgery in Memphis

    There is a surgeon in Memphis who trained some with Dr. Lenke named Julius Fernandez with Semmes-Murphy. That may be a closer location for you to try. I have heard good things about him.

  15. #15
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,548
    I think that Pilarís case is the only one like this here....and of course a really good surgeon will be needed........

    Dr Pashman will consult without a visit......just e-mail x-rays to him. He will probably charge something.

    http://www.cedars-sinai.edu/Bios---P...ashman-MD.aspx

    http://www.espine.com/adult-scoliosis-cases.htm

    Just trying to find a direction here.....He would be good for a 2nd opinion.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,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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