Announcement

Collapse
No announcement yet.

Happy and well without surgery?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Happy and well without surgery?

    I am aware of Weinsteins's research which shows that patients with untreated late onset ideopathic scoliosis have similar life expectancies and health outcomes to the general public.

    I am 52 and weighing up the pros and cons of surgery.

    Is there anyone out there who has never had surgery and who has made an informed decision not to?

    Looking forward to hearing from you.

    Jenny

  • #2
    I am 53 years old and have 3 large curves and have never had surgery etc. I chose to raise my daughter instead. I now know that I probably waited a tad too long. I have severe lung dysfunction and now are tied permanently it appears to Oxygen. I have pain but I'm dealing with it. Don't let your lungs get too bad. Consult a couple doctors. There are lots of people from UK and rest of Europe on Scolios Sites that are all over the net
    Last edited by Amazed; 11-20-2004, 01:21 AM.

    Comment


    • #3
      Good morning,
      I had surgery in 1954 to correct a breathing challenge, in fact I was going to die with out it, they fused all of my back except for two lower verts for mobility. They (specialist) only gave me a 50% chance of surviving the surgery and less then that of ever walking again. Oh-well here I'am at the good old age of 54 and my spine has had enough, I have no rod or metal parts of any kind. I have all kinds of spinal problems, including progressive curvature or scoliosis, rotoscoliosis, spinal stenosis, arthritic, Facet Joint desease...etc. Right now I have the normal expected pain or discomfort that can be expected with this challenge and I'm on the normal pain medication for pain management. BUT NO MORE SURGERY FOR THIS GUY, ENOUGH IS ENOUGH. The medical model is not always right, and pain and discomfort is a personal thing. We all must and do learn to live with a different degree of pain in our life, some physical and some mental. GOD BLESS....
      Live long and prosper!

      Comment


      • #4
        Dear Danite and Amazed,

        Thanks for your input.

        Amazed,did your doctors tell you that you would get worse and if so,even though you had your daughter to look after, why did you not have surgery?Do you now regret your decision?



        Best wishes
        Jenny
        Last edited by Jenny Spencer; 11-23-2004, 09:55 AM.

        Comment


        • #5
          Hi Jenny

          I don't know whether you can call my decision not to have surgery informed, but I have no regrets. I am nearly 47, and was diagnosed at age 12 with a 41 degree curve. Surgery was originally recommended for purely cosmetic reasons. A year later when the curve was 43 degrees (actually the difference between the two measurements is small enough to be measuring error), I was told that without surgery I'd be in a wheelchair before I was 30.

          I have no significant pain, and no noticeable breathing problems. I've had no noticeable height loss so I don't think the curve can have increased very much.

          Factors to consider when deciding about surgery are:
          Are you in pain, and if so is it getting worse?
          Are your curves increasing?
          How bid are your curves now?

          If the answers are no, no and < 50 degrees, I wouldn't even consider surgery, but this is the personal opinion of someone with no medical training.

          Comment


          • #6
            Hi Nutmeg & Jenny,

            I agree with Jenny, it is a very personal decision and it should be, I do understand or feel that most medical models by design sometimes look at surgery as a quick fixs and answers to the problems or issues that we face each day. Sometimes causing more medical or personal problems in the long run, and requiring more surgery.
            We must all be empowered to make if possible are own decision regarding surgery, we are people first and our disability is second. I wish everyone a Happy Thanksgiving and look around you for positive things in your life and give thanks.
            God Bless....
            Live long and prosper!

            Comment


            • #7
              non surgery

              Oddly enough the doctors kept saying that the scoliosis won't get worse. They also said that it didn't hurt. They also said their no guarantees with any surgery on spines and I could spend up to 2 years in a body cast. They were wrong. I'm sorry I didn't do something about 10 years ago. Just never thought about myself as being out of commission for very long.

              Comment


              • #8
                Are you saying that if you could go back in time you would opt for surgery?

                Comment


                • #9
                  Hi Nutmeg,

                  You say your curve was 43 at age 13.Have you had your curve measured since?

                  Comment


                  • #10
                    Hi Jenny

                    No, I've never had my curve measured properly since then (not even during the 3 years I was on the waiting list for the surgery I refused to have).

                    I feel fairly confident that it has not increased enormously, because I have not got any shorter. However, a few years ago I had a chest X-ray as part of migrating to Australia. I had a go at measuring the curve on that and came up with about 48 degrees. I have no idea whether this is accurate, but it does fit in with what I read on a scoliosis website somewhere, namely that curves between 40 and 50 degrees at maturity tend (statistically) to increase very slowly after maturity, probably 10-15 degrees in a lifetime. ( I was an early developer, when my curve was last measured the summer after my 13th birthday I had been menstruating for almost a year, and wearing an adult bra for 18 months).

                    Comment


                    • #11
                      Hi Nutmeg .

                      Thanks for your email.It's interesting to note what you say and I'm so glad you didn't have surgery as it sounds that you really didn't need it.

                      Best wishes

                      Jenny

                      Comment


                      • #12
                        I had mild scoliosis as a child (post-polio) and was stable until a few years ago (when I reached age of 50). I have done a lot of reading on the subject of surgery and have decided that the risks outweigh the benefits. I have also attended conferences where the guest speakers have been very clear that this surgery should not be considered unless pain is very severe and/or breathing/cardiac functioning is compromised. At this point, my balance is off and it has affected the quality of my life. However, the ability to bend after fusions, and the possibility of needing revision, will definitely affect quality of life. Bottom line: Surgery is not a panacea and hold many risks.

                        Comment


                        • #13
                          Hi Jeanne,

                          I am very interested in your stance on surgery.i.e. that it's not a panacea and holds many risks.

                          I'm in the process of trying to decide whether to have surgery and I can understand your viewpoint.It's a quality of life issue as you point out.

                          I wonder whether you can share further
                          how you reached your decision.You've clearly read extensively .Is there anything you'd personally recommend that helped you decide that the risks outweighed the advantages?

                          The speakers at the conferences you attended said to wait until pain very severe and/or breathing/cardiac function is compromised .Could you add more to this as well as I'm very interested in this point.

                          Best wishes

                          Jenny

                          Comment


                          • #14
                            I've always worked in healthcare, so I'm comfortable reading articles. I also purchased a book written by a well known spine physician here in Manhattan (Neuwirth). I attended an all-day conference at Hospital Special Surgery about adult scoliosis (in conjunction is NSF). The key speaker, Dr. Boachie, is chief of spine surgery there. He was refreshingly frank about the seriousness of this surgrey, especially for people in middle age (when our overall strength is not what it was as teenagers, and when most of us have some bone loss). Since I have osteoporosis, this would be a major risk in terms of stability of hardware and the probability of needing revison is real. I broke my knee a couple of years ago and the surgeon had difficulty attaching the hardware internally.

                            Functioning post-fusion is also a concern for me. Since my legs are weak, I have relied on upper body etc. If I can't bend my spine, this would pose problems with functioning (i.e. I can't bend from the knees if I need to pick something up).

                            Lastly, taking time out of life for surgery, recuperation and rehab is more than I want to take on until I absolutely need to.

                            Comment


                            • #15
                              Thanks for the info Jeanne.I've read the Neuwith book.
                              Very interested to note Boachie's views on surgery on the middle -aged.Was it him who said wait until pain severe etc?
                              My consultant recently suggested we look at the SRS website for Boachie's arguments for and against surgery.
                              I've not yet located it and hope it wont be too hard to find.

                              Comment

                              Working...
                              X