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  • A question for the women

    My ortho’s opinion is that I’ll need surgery at some point, but since I’ve lasted this long and am doing ok, there’s no reason to rush it. In general I agree and can’t imagine taking such drastic measures until I’m truly desperate (for the most part my pain is very manageable). So right now the risks seem much greater than the reward.

    BUT I’m feeling like I’m at a bit of a crossroads and would love the advice of my “elders”. I’m 30, recently married, and looking forward to having kids – not right away, but definitely in the next decade. I’ve read lots of accounts of curves progressing more drastically during pregnancy, and again in menopause. I would hate to regret missing an opportunity to prevent this, so my question is this…

    For those getting up there in years, whether you’ve had surgery or not, do you regret not having surgery/glad you did when you were younger and stronger? How has your curve progressed through pregnancy/menopause? I realize that every case is different, but would love your thoughts.

    I’m in LA and considering going to Dr. Pashman for a 2nd opinion. Maybe if I’m a candidate for the minimally invasive surgery that would make it worth the risk.

    *This is my first post and wasn’t sure whether to put it in the surgery forum or not. Feel free to correct.
    1993, Age 13, 53* Right T Curve w/ Left L compensatory
    2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

    http://livingtwisted.wordpress.com/

  • #2
    Hi Mehera,

    I'm not much help on the long-term question. My son is in about the same position you are--he has a high 50s/low 60s curve and he's 23.

    Without pain or proof of progression, the decision is pretty fuzzy. Looking at your blog, if you could get your old xray and have your doctor compare it to the current one, you'd have a better sense if you're progressing or not. My son is likely *not* progressing, but he's had his curve measured as everything from 45 degrees to 63 degrees within the span of a few years depending on who is reading the xray (with the 45 degrees being one of the more recent measurements). So, IMO, it's *very* hard to tell if you're progressing unless you have the same doctor looking at all of the xrays.

    One comment I wanted to make to your blog posts is that you really haven't missed any kind of magic window, or put yourself into a bad position by not monitoring your curve more closely. It doesn't sound like your curve progressed aggressively after diagnosis, and that's really the only time they do surgery. My son had likewise stopped progression by the time he hit the magical surgery cutoff number. The only reason they do surgery in kids is to stop progression. Since you'd already stopped progressing, you probably weren't a surgical candidate at 13. Also, 30 is still considered "young" in terms of risk of surgical complications. It's not quite as easy as teenagers, but it's considered young enough to bounce back fairly quickly.

    Best of luck in making reaching a decision. It's much harder, I think, when the decision isn't somehow made for you by a rapidly progressing spine.

    Comment


    • #3
      Thanks for the response. I have requested release of my old records. So if I can get those x-rays I think I will take your advice and have one doctor review both the old and the new x-rays. At this point I am glad that I didn't have surgery when I was a teenager, but I wish there was a way to look into the crystal ball to know whether now's the time while (like you said) I'm still relatively young. Let's hope both your son and I have good luck avoiding progression!
      1993, Age 13, 53* Right T Curve w/ Left L compensatory
      2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

      http://livingtwisted.wordpress.com/

      Comment


      • #4
        Hi I'm also a newbie and have been in menopause for 8 years and have been to a Dr. also for lower back pain which was from a back injury 10 years ago. I found out I have lumbar scoliosis and will need surgery in the future. You brought up a good point about the menopause speeding up the progression i had never thought of that but it wouldn't surprise me since it seems to hurt more often than before.
        I was also recommended to Dr. Pashman but found Dr. Anand from the same group who comes highly recommended as well.
        Let me know how it goes and good luck !

        Comment


        • #5
          Hi Mehera, I just turned 61. Two curves in the 40/50 something range which have progressed slowly over time. Had my daughter at age 31, no problems and no progression during that time (gained 30 lbs during pregnancy, back to normal very shortly thereafter). I do not regret not having had surgery. Post menopausal pain and progression did surface - I tried bracing for a year (back to feeling 40) and do not regret that either ;-)

          Comment


          • #6
            Hi mamamax,
            Does bracing help as far as slowing down the progression or does it make you feel better? I am 53 and would love to avoid surgery as much as possible but don't want to wait until it gets so bad that I'm in such agonizing pain, so far it's manageable. My doc said anything I do is only temporary but since I'm in menopause I have a feeling it will continue to progress more and more.

            Comment


            • #7
              mamamax and nurseinpain,

              Thanks for sharing your experiences. At this point, I've decided to put off surgery as long as I can. I can't imagine taking such a risk and putting more limits on what I'm able to do, just to avoid possible future progression. Instead I'm trying to explore as many other options as I can to manage my pain and prevent progression.
              1993, Age 13, 53* Right T Curve w/ Left L compensatory
              2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

              http://livingtwisted.wordpress.com/

              Comment


              • #8
                Hi Mehera,
                I have seen you over at the fixscoliosis.com site. Nice to see you here too! I am a CLEAR doctor and have been utilizing this program for about 4 years now. From the standpoint of pain relief I have seen some wonderful results with my patients. The pain, in general is the first thing to go away. I attribute this to the mix, fix set protocol that we utilize. The patients I see, as you can imagine, don't want epidural injections, pain medications or surgery. I am actually often pleasantly surprised at how well they do with regards to pain. Keep in mind, as with all programs, it will work for some and not for others.

                As far as pregnancy goes, I have a multitude of patients that have scoliosis and have had children and are doing well. I even had a patient state that her curves reduced while pregnant. These patients don't have small curves either. We are talking 40 and up Cobb angles.

                The issue of pregnancy and scoliosis often comes up with my younger patients. I can only offer my clinical advise as to what I have seen in practice. So far, I have not had any patients experience complications due to their curvatures. I am sure there are some out there...but this has been my experience.

                I have seen your blog and it appears that you have a proactive approach to your scoliosis. In my humble opinion, if you are functional with minimal pain than surgery is not a necessity. Unfortunately, once surgery is done you can't go back.

                If you ever have any questions, please don't hesitate to ask! I have an open mind and am not trying to push an agenda. Just want to see people get better!
                Sincerely,
                Dr. Jacqueline Smith

                Comment


                • #9
                  Originally posted by Angele1 View Post
                  I even had a patient state that her curves reduced while pregnant.
                  How would she know that without a radiograph? Is it really worth repeating what a patient thinks? Patients demonstrably think counterfactual things all the time. So do alternative treatment purveyors.

                  Just want to see people get better!
                  Does that involve gathering evidence that the patients want to see?
                  Sharon, mother of identical twin girls with scoliosis

                  No island of sanity.

                  Question: What do you call alternative medicine that works?
                  Answer: Medicine


                  "We are all African."

                  Comment


                  • #10
                    Hi Agele1,

                    Thanks for your support. I had essentially come to the same conclusion about my particular case as well. I'll be sure to update how things are going.
                    1993, Age 13, 53* Right T Curve w/ Left L compensatory
                    2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

                    http://livingtwisted.wordpress.com/

                    Comment

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