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  • Stuck in the same place

    I got diagnosed two years ago. although my curve is nothing like some of yours, I do suffer from constant, excruciating pain. I've tried medications and therapies. My doctors don't really listen so I'm going somewhere else. I want to have surgery, but I'm not sure if that's best. Without someone having gone through the pain I have, that person can't tell me what best for me. So I was wondering what any of your reasons are for going through with surgery, or not going through with it. I've done my research but nothing compares to first-hand experience.

    Top curve: 52
    Bottom curve: 48

  • #2
    Hi Emily,

    I remember how you feel. When I first found out how far my curves had progressed since the time I got out of my Milwalkee Brace, I just wanted to head for the hills. No way no how was anyone going to perform that 'barberic' surgery on me, as I thought. In the last year or so prior to surgery, my back pain was getting worse and worse, I started having nerve pain down one leg, and basically, my back was getting in the way of me trying to live my life like I wanted to. I was so upset when a 1.5 months prior to surgery, we went away for the weekend, did lots of hiking and shopping. After that first day my lower back was so bad I could hardly lift my leg into the car without tugging on it with my arms. I think that was a sign that I was doing the right thing. All of that presurgical pain is gone now. I'm convinced I did the right thing, even though I still get muscle spasms now and then. From what I understand, that gets better and better over time.

    Good luck with your decision. It's a personal decision that no one--not a spouse, siblings, parents or children can make for you. Once I made the decision, I was lucky to have support of my family around me. That's another thing though--sometimes family or friends try to talk you OUT Of it once you have made a decision to go ahead with surgery. They're only wanting the best for you, but bottom line is that they are just not as educated as you will be if/when you make the decision.

    Again, good luck to you and ask anything you want.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

    Comment


    • #3
      Well put, excellent advice Deb. You hit the nail right on the head. It is a decision only you can make. And do know that others probably will try to talk you out of surgery if that is the decision you make. Good luck Emily with what ever decision you make.
      I made the decision for surgery because my progression was speeding up and I knew I would be losing my excellent insurance coverage after I divorced. I could have waited maybe 3 more years for the surgery, but then I wouldn't have been able to afford the surgery and my correction probably wouldn't have been as good, nor my recovery as easy as it was.
      Again, I wish you well on your journey.
      Geish
      Last edited by Geish; 07-06-2009, 12:48 PM. Reason: I shouldn't try to make sense without having coffee first!
      Geish
      47 years old, dx at 13
      +30* to the right, +60* to the left, +30* to the right
      Surgery 12-13-07 - fusion from T4 to sacrum.


      http://www.scoliosis.org/forum/attac...tachmentid=267 Pre surgery
      http://www.scoliosis.org/forum/attac...tachmentid=268 Post surgery
      http://i156.photobucket.com/albums/t...s/DSC01091.jpg Xray from the side
      http://i156.photobucket.com/albums/t...1089-1-1-1.jpg Xray from the back

      Comment


      • #4
        Hi Emily! My daughters name is Emily too! She has almost the exact same curves as you only her bottom was 43 and top 50. We went ahead with the surgery because we were afraid her lumbar would catch up with the top and she would need a longer fusion. She was also in a lot of pain. They only fused her top curve (T1 to T11) and in one month her lumbar curve went down to 25. Would we do it again? Yes! The first two weeks were horrible but now she feels great! I have to keep reminding her to not do things! Her shoulders are a little crooked now because she also had a top c curve of 30. I think she looks straighter everyday. I wish you the best! How old are you? My Emily is 14.

        Becky Boston braced 1 year. Curves T27 and L32. Still holding!
        mom to Brandon(17) totally straight
        Emily (14) T50 and L 43 (had surgery 5-28-09)
        Callie (11) T16 and L13 (Getting a providence brace 7-24 because of family history. Here we go again! Risser 0)

        Comment


        • #5
          Originally posted by emily4416 View Post
          I got diagnosed two years ago. although my curve is nothing like some of yours, I do suffer from constant, excruciating pain. I've tried medications and therapies. My doctors don't really listen so I'm going somewhere else. I want to have surgery, but I'm not sure if that's best. Without someone having gone through the pain I have, that person can't tell me what best for me. So I was wondering what any of your reasons are for going through with surgery, or not going through with it. I've done my research but nothing compares to first-hand experience.

          Top curve: 52
          Bottom curve: 48
          Hi Emily...

          It sounds like you might be going to the wrong doctors. Or, the doctors might be picking up on something that makes them think that surgery won't help. I think that a conservative specialist is a good specialist. If a surgeon thinks that surgery won't help, it's at least something to consider.

          I'd like to encourage you to start thinking about the specifics of your pain (where?, when?, can you do things to create or alleviate the pain?, etc). When we're able to be specific about describing pain, it can tell a good scoliosis specialist why we're having pain (and whether surgery might help). Also, you need to find a good specialist. You'll find a list here:

          http://www.srs.org/find/

          Good luck.

          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


          • #6
            Welcome to the boards Emily!

            You mentioned treatments you have had, what kind of treatments have you tried so far? There is a fair amount of things to look at, we just need to help you figure out what is right for you.

            As for reasons why I had the surgery, well I was 12 when I had mine, so the decision was not really mine to make, but it was the right one. For me my curve was so severe it had to be done, it was literally life threatening. So thats my reason.

            Brad
            Surgeries July 26th & August 3rd 1983 (12 years old)
            Still have 57 degree curve
            2 Harrington rods
            Luque method used
            Dr David Bradford
            Twin Cities Scoliosis Center
            Preop xray (with brace on)
            Postop xray

            Comment


            • #7
              Hi Emily,

              I agree that you need to see someone who specializes in adult scoliosis before you can make an informed decision about your back. In my case, I was initially told to give physical therapy a try, which I did, and it was somewhat helpful -- but all indications were that my severe curve would continue to progress. I was told (by two different specialists) that eventually I would have to do something surgically about my curve if I did not want to deal with debilitating problems as I aged.

              Each case is very individual, and no one can generalize for you what you should or should not do. This surgery is huge and it really needs to be thought through. Good luck!
              Chris
              A/P fusion on June 19, 2007 at age 52; T10-L5
              Pre-op thoracolumbar curve: 70 degrees
              Post-op curve: 12 degrees
              Dr. Boachie-adjei, HSS, New York

              Comment


              • #8
                My reason for surgery was that I was losing height so my GP sent me for bone density scans and xrays and when she saw them, she said, "My goodness Jennifer. You have the most interesting spine I've ever seen". She then wrote me a referral to Dr. Askin. Because of my age he suggested it should be done within 12 months. It was then a matter of getting over the shock of discovering I needed this surgery, when I had no idea things were so bad, and waiting for my surgery date. My first one I chickened out, but I was more than ready for my second date and have absolutely no regrets.

                I had a couple of people try to talk me out of it, one of whom had orthopedic surgical experience many years ago and hadn't realised how far the surgery had come since those days. Now, everyone's seen the difference it made and thinks it's amazing.
                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

                Comment


                • #9
                  Thanks for the responses, all of you!

                  I'm not very computer savvy. And I haven't really figured my way around the site yet, so I'm just replying to all of you here, hope that's okay.

                  Debbe- Thank you so much for all your feedback. It's SUCH a relief to finally have people who get it.

                  Momw/scoli- I'm 18 It's cool your daughter has the same name!

                  Linda- I think what bothers me most about the two specialists I've had is that they don't give me the time of day. I try to tell them, and they don't listen. My office visits are legit less than five minutes long. I'm going to the Mayo Clinic in Minnesota to see a scoliosis specialist there, and I'm really looking forward to just moving forward. Thanks so much for the list too, so considerate!

                  Brad- Treatments I've had included physical therapy, oral medications (muscle relaxors and anti-inflammatories), an inversion table, and spinal injections. I've tried stretches for pain relief, ice/heat...it's just all to nothing. The pain is honestly excruciating...and I don't know what else to do. I know there are a lot of other things to try before surgery, but my scoliosis is effecting me in about every area of my life; from how long I can sit (meaning avoiding movie theaters and road trips), to how long I can stand (avoiding concerts). Sitting doesn't help, laying down doesn't help. It's just frustrating...no matter what I do.

                  I know there are a lot of you that have had it worse, and I don't want to sound like I'm making something out of something little. I'm just starting to notice things about myself. My shoulder is higher on one side, my back sticks out on the left, my waist coming in at different angles, I'm pigeon-toed in my left foot...the list goes on. It just makes it impossible for me to look in the mirror and feel good, ya know? I just want some relief. Anything.

                  Comment


                  • #10
                    Emily,

                    I know one doctor in Minneapolis at the Twin Cities Spine Center, Dr. Ensor Transfeld. He was training under Dr. Bradford at the time. I liked him. So if your time at the Mayo Clinic isn't to your liking, you might try him out.

                    Don't worry about comparing curves and what bothers you, each of us is different, and we each have our own issues that are completely valid. I never had pain before surgery and if you look at my preop xray its pretty extreme, my problem was breathing, I just very quickly ran out of breath. So you're not making something out of something little. You have valid issues and never feel that they are less important than someone else's, they are your issues after all.

                    A couple of suggestions for laying down, if I may... Have you tried sleeping on a couch? With your spine up against the back of the couch (laying on your side) with a pillow between your knees (and under your head of course)? Or in bed using pillows between your knees and behind your back while laying on your side? Do you have a memory foam mattress topper? A lot of us use that, and until I got one I was never, ever, able to actually lay on my back for any length of time. Memory foam mattress topper is heavenly, and they are pretty cheap too. I have a 3" topper.

                    As for spinal injections, yeah they didn't work for me either. My wife gives me a massage about 2 times a week which does help as I get lots of knots in my back. I guide her to where the knots are and she takes care of them. Do you have anyone that can try that out with you? For some it helps, for some it doesn't.

                    Keep up with asking questions, thats what we are here for, to help each other out with what ever knowledge we have and to offer support.

                    Brad
                    Surgeries July 26th & August 3rd 1983 (12 years old)
                    Still have 57 degree curve
                    2 Harrington rods
                    Luque method used
                    Dr David Bradford
                    Twin Cities Scoliosis Center
                    Preop xray (with brace on)
                    Postop xray

                    Comment


                    • #11
                      Thanks Brad, I appreciate that. I never thought about a mattress pad! That's something I'm going to try. I've slept with a pillow between my knees before, but I never thought about the couch either. That could help. My boyfriend tries to help with knots I get and such, and it helped temporarily, so I'm thankful for that. Thanks a lot for the suggestions, I'm really going to try them out. I'll let you know how it goes

                      Comment


                      • #12
                        Originally posted by emily4416 View Post
                        Thanks Brad, I appreciate that. I never thought about a mattress pad! That's something I'm going to try. I've slept with a pillow between my knees before, but I never thought about the couch either. That could help. My boyfriend tries to help with knots I get and such, and it helped temporarily, so I'm thankful for that. Thanks a lot for the suggestions, I'm really going to try them out. I'll let you know how it goes
                        Until I got a memory foam mattress pad my best sleeps were on the couch. Just being able to rest up against the back can be so nice. You may have to figure out which side is better, or even which couch is better. Sometimes I take a small towel and press into the small of my back up against the couch as well. It just depends on how my back is feeling that day.

                        Well a massage is only temporary, which is why my wife usually does it twice a week. I get knots fast! So you might want to set regular days to have your boyfriend massage you, and see how that goes. Men usually like an excuse to touch their girlfriends, so I don't think he'll object too much.

                        You're welcome for the suggestions, I hope they work for you. Remember keep asking questions and keep pouring through the forums, there is a ton of info here!

                        Brad
                        Surgeries July 26th & August 3rd 1983 (12 years old)
                        Still have 57 degree curve
                        2 Harrington rods
                        Luque method used
                        Dr David Bradford
                        Twin Cities Scoliosis Center
                        Preop xray (with brace on)
                        Postop xray

                        Comment


                        • #13
                          "Men usually like an excuse to touch their girlfriends, so I don't think he'll object too much. "

                          Ha! Ha! Just had to laugh because that must be true! My husband will massage my back every night!! It really helps, he says I have him trained well!

                          Comment


                          • #14
                            Originally posted by MichelleK View Post
                            "Men usually like an excuse to touch their girlfriends, so I don't think he'll object too much. "

                            Ha! Ha! Just had to laugh because that must be true! My husband will massage my back every night!! It really helps, he says I have him trained well!
                            LOL

                            Well I guess I must have my wife trained well then too! Actually she's really a gem, she's read books on massage techniques and even got a few dvds. They have helped her improve quite a bit. She's not up to a properly trained masseuse yet, but she wants to take courses as well. The other benefit to have a spouse massage you is what that can segueway into.
                            Surgeries July 26th & August 3rd 1983 (12 years old)
                            Still have 57 degree curve
                            2 Harrington rods
                            Luque method used
                            Dr David Bradford
                            Twin Cities Scoliosis Center
                            Preop xray (with brace on)
                            Postop xray

                            Comment


                            • #15
                              Quikdraw you and I are or appear to be very similar with our problems, our operations were different but I can understand the pain you are having and love the idea of a memory foam mattress topper, and also I hadn't figured out the pillow thing until you wrote about it, so simple yet so effective.

                              Thank you so much for your input, you never know who you are helping on this forum eh!

                              Emily, please come to this forum with any questions you are having, I am so very glad you have found it. No question on your part dear will ever be unimportant to any of us here. I am so sorry you are in so much pain, you are in my thoughts.

                              Lorraine.
                              Last edited by Lorraine 1966; 07-07-2009, 08:03 PM.
                              Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
                              Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

                              Comment

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