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  • #16
    I was operated on by Dr. Boachie 2 years ago at the age of 60 and got my life back. My surgery was a revision of un-instrumented scoliosis surgery I had in 1956 for a 100 degree curve. My triple curves increased over those years. At age 52 my major thoracic curve was 64 deg by age 59 it was 80 deg. I did have shorteness of breath even when I talked. On my first visit Dr. Boachie outlined what was involved but advised me not to wait because I was getting worse. I was able to control pain with exercise up to a point but in the end I would wake up at night with throbbing pain where my rightward thoracic curve met my leftward lumbar curve(called transition zone). Those spinal nerves were trapped with no place to go.

    I have been an RN for 40 years 30 years of which I have been a nurse-anesthetist. I knew exactly what the risks were. Though I was terrified I was grateful that help was available. But not breathing was not an option for me. I personally would have done something before age 60 but I didn't know I had the option.

    The problem with waiting until breathing problems ensue or terrible pain occurs is that one goes into surgery in in less that optimum condition. The pain causes deconditioning and the breathing problems increase the anesthetic risk. The larger the curves the less correction possible and think about it all the major organs, spinal cord, joints, etc. that will need repositioning. After surgery this is very painfu.
    The point I am trying to make is be informed and know the consequences of action or inaction. A stable curve that's not increasing is not a problem. If a curve is increasing in an adult say 1-3 degrees a year do the math. As Linda says if surgery is warranted the younger the better because healing is quicker.

    I was very fortunate in my outcome. I am back at work and essentially pain free. I needed to be fused T-4 to sacrum. My original fusion in 1958 was T-4 to L-2 but the discs below that fusion had totally degenerated. I basically do everything I want and need to do.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

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    • #17
      Boachie didn't say to wait until pain severe. However, he was very clear about the seriousness of the surgery and complication rate (10% I believe). He gave impression that if there is medical necessity (pain, compromised breathing/cardiac functioning), then surgery should be considered. I didn't get the feel any time during his talk that he was recommending surgery for those of us without pain.

      I'd like to see what Boachie has written. If you find the website, can you send to me? I'll also look.

      Thanks.

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      • #18
        My curve is lower back. Minimal thoracic curve. My concern is that I have osteoporosis (osteopenia in spine) and my legs are weak (post-polio). My fear is that with a fused spine, I won't be able to bend, pick things up (legs not strong enough to bend from knees). I'm also concerned about pain post-op and rehab, particularly since I'm compromised in lower extremities.
        I know every case is different. I guess that why I feel those who recommend surgery without reservation may be sending an overly optimistic message to people like me. For those of us (post-polio), the issue is not so simply. I would love to hear experiences from people with simple medical history to mine.

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        • #19
          Hi Karen and Jeanne,

          For someone like me who is weighing up the pros and cons of surgery ,the comments that you both have made above have had a great effect on me.

          I was thinking when I read what you said ,Jeanne,that I'd wait and see how things progress.But then your email arrived Karen and I realised that I don't totally appreciate the consequences of inaction.

          If the advice is to wait until pain is very severe and/or breathing/cardiac functioning is compromised then this could be waiting for something that might or might not happen .Logically it doesn't seem sensible to wait until breathing problems or severe pain arrive on the scene for the reasons Karen has noted.

          I am truly finding this all very hard.However both your replies encapsulate the two views I am currently struggling with and am very grateful to you both.


          Jenny

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          • #20
            Good afternoon,

            As a License Professional Counselor, and an Advocate for people with disabilities I was empowered to write regarding this posting regarding surgery or not. First as many of you know I'm not in favor of surgery unless it is the last option. Again pain and discomfort is a personal item. We should never try and catalog individual chronic or severe disabilities into groups as so many medical models support and encourage. They are as individualized as the person is with the challenge or disability, we can understand and appreciate what that person is going through if we have a similar condition of course. But the pain is difficult at best to catalog or to handle.
            I'm not a supporter or a believer in modern medicine but a believer in the individual, we are people first and are disabilities are second. ANY SURGERY should be considered as second choice and only after the PAIN or DISCOMFORT is too much. I know that some day in the near future, it will be necessary for me to again to consider surgery. But as for know, my pain is somewhat manageable, and God Bless you all.
            Live long and prosper!

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            • #21
              Working in healthcare, I am a believer in preventive medicine . I also believe it is counterproductive to delay treatment. However, unless there are compelling medical reasons, I don't think it's wise to subject anyone to major surgery. Proponents of spinal fusion for scoliosis some times don't appreciate that no everyone is able to compensate with the rest of their body while their back heals, and when their back is restricted by fusion.

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              • #22
                I note what you both say, but do you think we might be making things harder for ourselves by waiting until problems develop?

                I've found some very interesting biographical info on Boachie but not what my surgeon said I'd find(the arguments for and against surgery)

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                • #23
                  Hi Jenny...

                  I know the SRS pretty well, and don't think there's anything authored by Dr. Boachie in terms of pros and cons regarding surgery. The issue is discussed in a book co-authored Dr. Boachie, Scoliosis Ascending the Curve. It includes a section on "Risks and Benefits of Surgery,", and another on "The Pros and Cons of Surgery."

                  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

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                  • #24
                    Hi Linda,

                    Many thanks for pointing me in the right direction.

                    Jenny

                    Comment


                    • #25
                      Dr. Boachie

                      Here are some links from the National Library of Medicine database authored or co-authored by Dr. Boachie: Notice the age ranges in the publications.

                      http://www.ncbi.nlm.nih.gov/entrez/q..._uids=12782986

                      http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?
                      cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=150 16398

                      http://www.ncbi.nlm.nih.gov/entrez/q..._uids=12845424

                      http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?
                      cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=125 90210

                      http://www.ncbi.nlm.nih.gov/entrez/q..._uids=11132980

                      http://www.ncbi.nlm.nih.gov/entrez/q..._uids=10752100

                      http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=9460161

                      http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15303023

                      http://www.ncbi.nlm.nih.gov/entrez/q..._uids=12438980
                      Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
                      Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

                      Comment


                      • #26
                        Hi Karen,

                        Thank you for the links

                        Jenny

                        Comment


                        • #27
                          Originally posted by JeanneManhattan
                          Working in healthcare, I am a believer in preventive medicine . I also believe it is counterproductive to delay treatment.
                          I do not agree that it is always counterproductive to delay treatment, this is a control issue for the individual with the disability or scoliosis. Once a decision is made for surgery, it is no longer that individual decision of rather to or not, the future is now on the outcome of the surgeon or surgery and is in the hands of people that depends on percentages, statistics and their experiences. I sincerely believe that individuals have more empowerment, motivation, and positive outcome when they are in charged, not the system or so called professionals. The medical model is not God and is not the only option. What is important, is that we consider all surgery as the last option with risks and with an uncertain future or outcome. We do know what our present Scoliosis condition is, and have a idea what it may be in the future, can we be positive that surgery is a cure all. NO!
                          With all my respect, and admiration to my Brothers and Sisters with Scoliosis, as a survival of old time Scoliosis surgery I'm a fighter and an Advocate for individual rights and inclusion. I do not wish to upset or cause anyone to resent my standings, so if I do, accept my sincere apology and have a great Christmas.
                          Live long and prosper!

                          Comment


                          • #28
                            Personally I think it's great that you express your views in such a forthright way.
                            It makes for a lively honest discussion ,which is very important when we're discussing such a serious issue.

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                            • #29
                              Hi Danite:
                              I think we're in agreement, but would like to know what "other options" are, other than surgery, to correct scoliosis. I believe in advocating for myself since I don't believe I can rely on health care profesisonal to do this for me. I've been a patient, and have had loved ones be patients. I have always (not to the delight of physicians or nurses), been very clear about what I want, believe and know my rights to be. The current healthcare system demands assertiveness. Too many physicians are too fast to recommend surgery. I realize that straightening my spine will require surgery. However, are there really people out there that would subject themselves to this if they are not currently in pain or have breathing/cardio compromises? That, to me, is not making an informed decision, and simply going along with the predictable physician recommendation.

                              Comment


                              • #30
                                Hi Jeanne,

                                I visited someone not so long ago who had surgery last year at age 42 .I believe she had no significant pain or breathing difficulties.

                                Her only reason for having surgery was that ultimately it would affect her internal organs.Everything went well and she looks fantastic.

                                Some part of me cannot help feeling she had a point .

                                Best wishes

                                Jenny

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