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  • New member, hello everyone

    Hello all. New to the forum.
    I've read alot through the different posts and have found quite a bit of helpful info on this malady. It seems a very helpful and supportive group you have here, awesome.
    Anyway... I was diagnosed with scoliosis at the age of 11 and fitted with a brace which I never wore. At the age of about 18 my curve (thoracic) was at 25*. Around that period of time I had seen the same DR a few different times because of the extreme uncomfortable feeling I always had.
    I didn't look too closely at the medical records back then but i rescently noticed, reading back though them, that i was diagnosed at 25* then a short time after at 35*, and then a short time after that back at 25*. I can only assume that the Dr I was seeing (I had seen the same DR throughout my whole life untill rescently) measured incorrectly at the 35*.
    Fast forward about 12 years, lot's of disscomfort and pain later, I schedule an appointment to consult with an orthopedic spine specialist at my local hospital and ended up seeing the same DR I had seen all of those years ago.
    He assures me after x-rays that my curve still holds at 25* and we have a thorough discussion about it all. Single throracic curve with apex at t3 or t4 (can't remember right off). I ask why, if everything has remained the same since all those years ago, has my deformity gotten notably worse and everything feels so much worse. He tells me maybe from rotation and that there's not really a way to measure that. I ask about surgery for correction and he says no way. End of discussion.
    Fast forward another three years and we are here today.
    I decide that maybe it's time to consult another specialist. He measures me with a 29* thoracic curve and a secondary (this is new) lumbar curve of
    11*. So, within the last 3 years this new curve has just popped up? Or did the first DR miss something all that time?
    This Dr. doesn't hesitate a moment to say that surgery is the only answer and we can do it as early as this August. He wants to get a current MRI to make sure some nerves arent compressed, so I'm still waiting to hear back on when the MRI is scheduled. That's been a week ago today.
    Sorry this has been so long-winded but I just wanted to get this off of my chest.
    Does anyone else think it is strange that for all of these years one DR would be so averted to surgery and then this one immediately opts for it right away?
    Surgery scheduled for January 2011
    by Charles (Ted) Shuff
    http://cabellhuntington.org/services...ce/physicians/
    http://s910.photobucket.com/albums/a...dayjunk/Davis/

    "Adversity is the state in which man most easily becomes acquainted with himself, being especially free of admirers then."
    -- Samuel Johnson
    "Beer is proof that God loves us and wants us to be happy." -
    -- Benjamin Franklin

  • #2
    i am shocked that a surgeon would suggest surgery for such small curves...the cut off point is usually at least 40 degrees, for some surgeons it is 50 degrees...

    i think it is important that you see another surgeon...or two...before you do anything!

    also, have you seen a pain doctor to see if that could help you? do you have any disc problems contributing to your pain?

    please be sure to see a surgeon listed on this forum as thoroughly experienced in scoli surgery!!

    and welcome...there is alot of support here...knowledge, friendship, and stories to learn from!

    jess

    Comment


    • #3
      First of all welcome.
      I have what sounds to be a similar curve pattern as you. My original curve runs from T1 - T6, diagnosed at 16 with 39 degrees. I've always had a second curve below that one that has only measured in the teens. My curve has held steady for over 20+ years. The last two years I was receiving chiropractic care and it started progressing. I am now at 46* and 38* for the secondary curve. I also have bouts of severe pain with my curves. My doctor that I have seen for the last 5 years says NO to surgery. I consulted another doctor out of state and sent him my X-rays and MRI's. This new doctor seems to think surgery may help me with pain. The standard for surgery is usually over 50 degrees, some docs won't touch people under 60*. My curve is considered in the surgical gray area (between 45 and 50 degrees). The reason I'm telling you this is because I can't imagine any doctor wanting to surgery for a curve of only 29* unless there are other severe factors involved. I would definitely recommend getting a third opinion and going with what 2 out of 3 say. Was the surgeon you saw that wanted to do surgery a spine specialist in scoliosis? You can go to the Scoliosis Research Society website and find certified doctors in your area. I would recommend you do more research on what the surgical criteria are for scoliosis surgery before you make that final leap. You may end up worse than before if you fuse a curve that small. Just an FYI, I think a curve has to be 11* for it to even be considered scoliosis. So your lumbar curve is VERY mild, barely even scoliotic. That's probably why it was never mentioned to you.
      Best Wishes
      Last edited by rohrer01; 06-18-2010, 01:05 PM.
      Be happy!
      We don't know what tomorrow brings,
      but we are alive today!

      Comment


      • #4
        i am shocked that a surgeon would suggest surgery for such small curves...the cut off point is usually at least 40 degrees, for some surgeons it is 50 degrees...
        I was wondering about this too as that I dont recall ever reading anyone that's had surgery for these degrees.
        I must admit that I would really like to be cosmeticly corrected, there is a degree of rotation that deforms my ribs giving me a right back rib hump and the left front uneven chest plate, and there is a whole lot of discomfort and come and go pain, especially in the right sacroiliac region.
        It seems all of these years I have been wanting this to be corrected and saddened by the fact the DR would not do it and now all of a sudden it is a go.
        I was thinking maybe getting another oppinion, I'm glad you mentioned that too.
        Surgery scheduled for January 2011
        by Charles (Ted) Shuff
        http://cabellhuntington.org/services...ce/physicians/
        http://s910.photobucket.com/albums/a...dayjunk/Davis/

        "Adversity is the state in which man most easily becomes acquainted with himself, being especially free of admirers then."
        -- Samuel Johnson
        "Beer is proof that God loves us and wants us to be happy." -
        -- Benjamin Franklin

        Comment


        • #5
          please be really careful..just because one (questionable) surgeon says it is a "go" doesnt make it so!! it is very very serious surgery...few surgeons will operate on such a relatively small curve for "cosmetic" reasons!

          i will ask you again..if the pain really bothers you...have you seen a pain doctor...? that would be the way to go first...

          surgeons who are ethical will tell you the truth, not what you want to hear...i understand that the appearance bothers you...but i dont know that you fully appreciate the seriousness of this kind of surgery!!

          jess

          Comment


          • #6
            also, have you seen a pain doctor to see if that could help you? do you have any disc problems contributing to your pain?
            Have never seen a pain specialist and as far as I know I have no disk problems.
            Surgery scheduled for January 2011
            by Charles (Ted) Shuff
            http://cabellhuntington.org/services...ce/physicians/
            http://s910.photobucket.com/albums/a...dayjunk/Davis/

            "Adversity is the state in which man most easily becomes acquainted with himself, being especially free of admirers then."
            -- Samuel Johnson
            "Beer is proof that God loves us and wants us to be happy." -
            -- Benjamin Franklin

            Comment


            • #7
              Originally posted by Davis View Post
              Hello all. New to the forum.
              I've read alot through the different posts and have found quite a bit of helpful info on this malady. It seems a very helpful and supportive group you have here, awesome.
              Anyway... I was diagnosed with scoliosis at the age of 11 and fitted with a brace which I never wore. At the age of about 18 my curve (thoracic) was at 25*. Around that period of time I had seen the same DR a few different times because of the extreme uncomfortable feeling I always had.
              I didn't look too closely at the medical records back then but i rescently noticed, reading back though them, that i was diagnosed at 25* then a short time after at 35*, and then a short time after that back at 25*. I can only assume that the Dr I was seeing (I had seen the same DR throughout my whole life untill rescently) measured incorrectly at the 35*.
              Fast forward about 12 years, lot's of disscomfort and pain later, I schedule an appointment to consult with an orthopedic spine specialist at my local hospital and ended up seeing the same DR I had seen all of those years ago.
              He assures me after x-rays that my curve still holds at 25* and we have a thorough discussion about it all. Single throracic curve with apex at t3 or t4 (can't remember right off). I ask why, if everything has remained the same since all those years ago, has my deformity gotten notably worse and everything feels so much worse. He tells me maybe from rotation and that there's not really a way to measure that. I ask about surgery for correction and he says no way. End of discussion.
              Fast forward another three years and we are here today.
              I decide that maybe it's time to consult another specialist. He measures me with a 29* thoracic curve and a secondary (this is new) lumbar curve of
              11*. So, within the last 3 years this new curve has just popped up? Or did the first DR miss something all that time?
              This Dr. doesn't hesitate a moment to say that surgery is the only answer and we can do it as early as this August. He wants to get a current MRI to make sure some nerves arent compressed, so I'm still waiting to hear back on when the MRI is scheduled. That's been a week ago today.
              Sorry this has been so long-winded but I just wanted to get this off of my chest.
              Does anyone else think it is strange that for all of these years one DR would be so averted to surgery and then this one immediately opts for it right away?
              Hi Davis...

              Welcome to the group.

              Like the others, I'm shocked that anyone would suggest surgery for a 29 degree curve. I would definitely work on trying to find another specialist if I were you. You can find a list of them here:

              http://srs.execinc.com/edibo/PublicDirectory

              There's enough margin of error to explain a 4 degree difference, so you'll need at least one more set of xrays (in another year), to document progression.

              Oh, and by the way, rotation can be measured in several ways. It sounds like the doctor you saw probably isn't specialized in scoliosis.

              Regards,
              Linda
              Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
              ---------------------------------------------------------------------------------------------------------------------------------------------------
              Surgery 2/10/93 A/P fusion T4-L3
              Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

              Comment


              • #8
                Was the surgeon you saw that wanted to do surgery a spine specialist in scoliosis?
                yes, the surgeon I have rescently seen, Dr Shuff of Marshal University Joan C. Edwards School of Medicine Department of Orthopedic Surgery Adult & Pediatric Spine Surgery.
                My old Dr, DR Robert W. Lowe who was affiliated with Saint Marys hospiatl in Huntington WV and was also a specialist.
                Thank you all very much for helping me out with feedback, I appreciate this so much, and thank you for the warm welcome.
                Surgery scheduled for January 2011
                by Charles (Ted) Shuff
                http://cabellhuntington.org/services...ce/physicians/
                http://s910.photobucket.com/albums/a...dayjunk/Davis/

                "Adversity is the state in which man most easily becomes acquainted with himself, being especially free of admirers then."
                -- Samuel Johnson
                "Beer is proof that God loves us and wants us to be happy." -
                -- Benjamin Franklin

                Comment


                • #9
                  I looked him up (Charles E. (Ted) Shuff, MD). He doesn't list "scoliosis" as one of his interests and he is not listed as an SRS member on their website. There are doctor's out there that can do a beautiful job on scoliosis patients that are not SRS members, but I would be careful. The red flags are there on this one.
                  Be happy!
                  We don't know what tomorrow brings,
                  but we are alive today!

                  Comment


                  • #10
                    I looked him up (Charles E. (Ted) Shuff, MD). He doesn't list "scoliosis" as one of his interests
                    heres a link to the hospital site and if you scroll down and look at his profile, scoliosis is listed. I did research this and I do realise that he is not a member of the SRS or listed on their site, that did kinda let me down.

                    http://cabellhuntington.org/services...ce/physicians/
                    Surgery scheduled for January 2011
                    by Charles (Ted) Shuff
                    http://cabellhuntington.org/services...ce/physicians/
                    http://s910.photobucket.com/albums/a...dayjunk/Davis/

                    "Adversity is the state in which man most easily becomes acquainted with himself, being especially free of admirers then."
                    -- Samuel Johnson
                    "Beer is proof that God loves us and wants us to be happy." -
                    -- Benjamin Franklin

                    Comment


                    • #11
                      Yes, indeed it does say scoliosis. I stand corrected. This is where I got my information from:

                      http://musom.marshall.edu/orthopaedi...s/cv_shuff.pdf

                      Look under research interests.


                      We're not picking on you. We are just concerned and don't want you to fall into the hands of a knife happy doctor.
                      Be happy!
                      We don't know what tomorrow brings,
                      but we are alive today!

                      Comment


                      • #12
                        Definately understand what you are saying there and I of course don't want to be in the wrong hands either.
                        I'm not sure what the paper your link leads to is dated but it looks to be from some time ago when this DR was in Virginia and before he came to the current hospital I am seeing him at. The link I provided is the most up to date, at his current practice and in this state.
                        I don't feel I'm being picked on at all and I really appeciate the honest oppinions and thoughts so please be as candid as you like.
                        Surgery scheduled for January 2011
                        by Charles (Ted) Shuff
                        http://cabellhuntington.org/services...ce/physicians/
                        http://s910.photobucket.com/albums/a...dayjunk/Davis/

                        "Adversity is the state in which man most easily becomes acquainted with himself, being especially free of admirers then."
                        -- Samuel Johnson
                        "Beer is proof that God loves us and wants us to be happy." -
                        -- Benjamin Franklin

                        Comment


                        • #13
                          Originally posted by Davis View Post
                          Definately understand what you are saying there and I of course don't want to be in the wrong hands either.
                          I'm not sure what the paper your link leads to is dated but it looks to be from some time ago when this DR was in Virginia and before he came to the current hospital I am seeing him at. The link I provided is the most up to date, at his current practice and in this state.
                          I don't feel I'm being picked on at all and I really appeciate the honest oppinions and thoughts so please be as candid as you like.
                          That's the problem with the internet.
                          Be happy!
                          We don't know what tomorrow brings,
                          but we are alive today!

                          Comment


                          • #14
                            But also, the possability of being corrected, to not have the constant feeling that I'm being ripped apart at the middle, to not have the aches and pains and burns, to resolve some of the deep psychological scars of being so twisted, to be able to wear whatever i want, the possability to feel ok in my own skin for once, to possably have a better quality of life. This is what pushes me into going for this. I know, in general, that surgery is not prescribed or recomended for this degree of curvature and I realise how major this surgery is. I'm just so torn. It's like all of my life I've wanted someone to be able to do something to fix this and when i finally find someone who says they can help, a million uncertainties burst forth.
                            Surgery scheduled for January 2011
                            by Charles (Ted) Shuff
                            http://cabellhuntington.org/services...ce/physicians/
                            http://s910.photobucket.com/albums/a...dayjunk/Davis/

                            "Adversity is the state in which man most easily becomes acquainted with himself, being especially free of admirers then."
                            -- Samuel Johnson
                            "Beer is proof that God loves us and wants us to be happy." -
                            -- Benjamin Franklin

                            Comment


                            • #15
                              This doctor has no training in spinal deformity. http://orthodoc.aaos.org/charlesshuffmd/index.cfm
                              I would search for a physician from the list Linda Racine provided.

                              Good luck.

                              Comment

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