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How do you know when it's time for surgery?

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  • How do you know when it's time for surgery?

    Hello everyone! This is my first time on, and here is my story. It may be a bit long.

    I wore the milwaukee brace from age 14 to age 16. My doctor did not recommend surgery for me, he didn't think I was that bad at the time. So I got through having the brace. Then over the years my back didn't really bother me that much. I had my two children daughter 18 and son 21 who also has scoliosis not to bad. My back started to bother me about 10 years ago. I went to see my old Doctor and he said to take some muscle relaxers but didn't bring up surgery. So I dealt with pain on and off. Then I would say about five years ago it was my relatives that actually mentioned to my husband that it looked like my posture was getting worse. So I went to see a orthopedic surgeon my GP recommended. He told me I would need the surgery from front and back removing a rib. Two surgerys. They would have to fuse my spine from the neck down. Yikes!!
    I guess I was a bit shocked, but figured the time had come. Although that Dr. did not do the surgery any longer. He made a list of hospitals he recommended for that type of surgery.

    I didn't want to go out of state, I live in Michigan. I went to U of M Ann arbor and saw the specialist there. He recommended I (wait and see) and try therapy. He said I would be more disabled if I had the surgery and wouldn't even be able to tie my shoes. That frightened me and I have to say I was a bit disappointed since I went there thinking I needed the surgery. I thought I would finally be straight and could get the surgery done. I went to therapy which does help when my back hurts and I get that stiffness feeling.

    I then decided I wanted another opinion and went to St. Joseph in Ypsilanti MI. to the Spine institute. That Doctor also recommended waiting. He said there are alot of risks to surgery. Recommended I work on losing weight (which I know I need to) and keep an eye on it. Ok,( but a bit disappointed
    again.)

    Am I too old?? at 44. Are they afraid to touch me? I have an upper curve in the 40's and a lower curve about 70 degrees. I lean quite a bit to the left. I guess deep inside I would like to get the surgery to straighten me out. I feel very uncomfortable at times. I hurt when shopping, standing etc. I also have been getting quite alot of heartburn. I don't know if thats associated with scoliosis or just the weight thing. I am about 40-50lbs overweight and just found out my thyroid is at a low level. Now taking medication. Maybe that will help.

    I don't know if I should just (wait and see) or continue with another Doctor.

    Anyone been in my position. I would love to hear from you.

    When is the decision made to have surgery? I'm afraid of waiting to long. I feel my curves are quite severe. Sorry so long!
    Last edited by Brendalee; 11-01-2005, 06:55 PM.

  • #2
    Hi BrendaLee,

    I had my surgery at 42 1/2 yrs. old. I had a 47 degree curvature, pretty large rib hump on my back from the rotation of my spine, my vertabraes had started shifting off each other and my right hip stood out 4 inches further than my left. I'm glad I had my surgery, I had a wonderful outcome, but I have to admit, if I had found this forum b/4 surgery...I would have taken a harder look at my situation and the decision to have the surgery. This surgery is more serious than I had imagined and the recovery was longer than I had hoped. I think in hind sight there is a thin line between getting it done sooner rather than later.

    Kindest Regards,
    Gail

    Comment


    • #3
      Hi Brendalee...

      I also had surgery at the age of 42. I was losing the ability to do the things I liked (shopping, going to museums, hiking, etc.). My curves were similar to yours (although my top curve was a little larger, and my bottom curve was a little smaller than yours). If you feel like you're going to eventually need the surgery, I would urge you to have it sooner rather than later. I'd also urge you to find a surgeon who does a lot of scoliosis surgeries on adults. You can find a list of specialists here:

      http://www.srs.org/directory/directory.asp

      Good luck with your decision.

      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


      • #4
        Hi there Brenda! I'm a Michigander too... Flint area. Where are you from? Nothing really to add except to agree with sooner rather than later being optimal if you're going to have it done. You're not too old, but it is harder on you the older you get, generally speaking.
        What surgeon were you referred to?
        Finding a scoliosis surgeon who works on adults can be tricky, but they are out there. Another one is Dr. Montgomery at Beaumont in Royal Oak. A coworker of my aunt's had her scoliosis surgery done by him, and SpineWhine (another member on this forum) is having surgery by him this December
        Blair

        Dec 15th, 2003 @ age of 20
        Posterior Fusion and CD Horizon instrumentation T2-L1.
        Surgery by Dr. Herkowitz- Beaumont Hospital of Royal Oak, Michigan
        Excellent correction of 52 degree single left thoracolumbar curve. Slight curve remains in unfused lumbar region but seems stable.
        February 5, 2005- Failed Scar Revision Surgery
        September 17, 2005- 2nd Failed Scar Revision.

        Comment


        • #5
          Hi BrendaLee... I don't really have much to say or add to this, but I wanted to say good luck with your decision... Also, the people on here are phenomenal, and the support is great... I find that I'm on here numerous times a day...you will not regret joining this forum... I sure haven't... Well, that's that. I hope things work out well for you...
          27 Years Old
          Pre Surgery: 76 and 68 degrees
          Post Surgery: 15 degrees
          www.bentoutofshape.blogspot.com

          Comment


          • #6
            Hi Brenda,

            It sounds like the normal progression and very much like myself. I am 48 years old, wore the Milwaukee Brace and surgery was not recommended for me...just a "wait and see." Two children later, on thyroid medication for hypothroidism and about five years ago it all started going down hill for me as well. Shopping, biking, hiking, standing, just plain not being able to do at all what I used to do without thinking about it.

            I too am scared to death not to do and scared to death to make the leap. I am fearful of the future without it and of course going through with such a surgery at any age, let alone 48.

            I am headed to St. Louis this Friday to see a wonderful surgeon for a second opinion, so I will let you know what I find out since we're kind of in the same boat!

            Sue
            48 year old Female
            3 curves...35, 56, 43
            Proud wearer of Milwaukee Brace in the 70's...and hated every minute of it.

            Comment


            • #7
              Thanks for your reply. It does make me feel better to know I'm not the only one with all these decisions to make. Dr. Graziano at U of M
              Ann Arbor, and Dr. Geiger at St. Joseph Spine Institute. Those are the Doctor's I consulted with.

              Comment


              • #8
                Sue,
                I would like to hear how your second opinion goes. Hope it goes well for you.
                What was your first Doctor's opinion? Brenda

                Comment


                • #9
                  I would vote for sooner rather than later on the time for surgery. As you get older, it gets harder to straighten everything out. I went from a 76 lumbar curve to a 45 degree curve at the age of 45. If I was 20 years younger, they thought I could have knocked off another 20 degrees or more. Still, I'm extremely pleased with the results - much reduced rib hump (w/o removing any ribs), no shoulder drop, much less pain, and over an inch taller than before the surgery.

                  BTW, I'm six months out from surgery by Dr. Bridwell (St. Louis) and I have no regrets at all about doing it. In fact, the results exceeded my expectations. My back was giving me all kinds of trouble beforehand but I was already better off three months out from the surgery.

                  Comment


                  • #10
                    Sue ~ Which doctor are you going to see on Friday?
                    ~ Irene ~
                    Lumbosacral Scoliosis: Corrective surgery (12 hours anterior and posterior) on June 19, 2002 at age 56; Surgeon: Lawrence G. Lenke; Hospital: Barnes in St. Louis, Missouri; Pre-Op 58/56 degrees "S" curve; Post-Op: 40/33 degrees; Fusion: T-11 to S1

                    Comment


                    • #11
                      I am also going with sooner than later. Where do you live in Michigan? I have had three opinions (from specialist surgeons). One with Minster who is out of St. JOhns in Macomb COunty (who I liked), and two Drs. out of Royal Oak Beaumont. I am going to be having surgery on Dec. 13 with Dr. Montgomery, at Beaumont - he is part of the Scoliosis Research society that Linda Racine mentioned, I liked him, although some think he is gruff. I have heard bad things about Dr. Lee at U of M, but no little of the other Drs that are in that specialty there.
                      Meg is Spinewhine
                      31 years old with thoracic curve
                      Wore Boston brace as teenager, but curve continued to progress.
                      Surgery on 12/13/2005 with correction from over 55 degrees to under 25 degrees. (Ya baby!)

                      The nitty gritty at:
                      http://spinewhine.blogspot.com/

                      Comment


                      • #12
                        Brendalee

                        To answer your question as to the first doctor: To make a long story short...I had seen Dr. Ronald DeWald for 33 years (Yikes!), he recently retired and I met last year at this time with his son Christopher DeWald. He said "sooner than later" and said he wouldn't let me progress. I was sent home to get together all my questions regarding surgery, make a plan, have some PT and come back in 2 months. I had a mess with insurance, they denied me continuing care under DeWald and was then referred to Dr. Bridwell, otherwise I would have probably never had a second opinion since I highly respected Rondal DeWald (and son). Surgery has always been a footstep away with age, but it was basically a wait and see.

                        Sue
                        48 year old Female
                        3 curves...35, 56, 43
                        Proud wearer of Milwaukee Brace in the 70's...and hated every minute of it.

                        Comment


                        • #13
                          Irene

                          I go to see Keith Bridwell. I see that you had Dr. Lenke. How did it all turn out for you?
                          Sue
                          48 year old Female
                          3 curves...35, 56, 43
                          Proud wearer of Milwaukee Brace in the 70's...and hated every minute of it.

                          Comment


                          • #14
                            Hi Brendalee,

                            I'm facing the same dilemma. I'm even older than you...I'm 56. Just this year I was diagnosed with a 74 degree thoracolumbar curve. Some pain I was having prompted me to seek advice from a spine specialiast since I thought it might be related to my scoliosis. However, I have never had any pain or discomfort prior to several months ago. Right now, I'm experiencing no pain of any sort and can do anything I want. I'm balanced and have good posture. I've always kept my weight down and am quite slim. Never having had xrays taken of my back until this year, I don't know the rate of progression I have been experiencing over the years. The only visible sign I can see of it has been over the past seven or eight years. I've lost two inches in height and my trunk looks more compressed. I think menopause can hasten progression. On the other hand, I hear over and over again of people who were previously treated with fusions and are years later experiencing the same problem of height loss because of discs degenerating below the fusion. I had a follow-up appointment last week with the surgeon who diagnosed me back in July and he told me to not even think about surgery if I am not experiencing pain. I mentioned to him that I am concerned about further progression and what it can lead to. He said my curve may or may not progress any further. He mentioned he has patients in their 90s with severe scoliosis who are doing well and some who are not. Nevertheless, to get another opinion, I have an appointment with Dr. Hammerberg in Chicago next month who comes highly recommended as one of the best.

                            After doing lots of research and reading several books, I've concluded that scoliosis really sucks! It's almost as if your'e damned if you do have surgery and you're damned if you don't. My greatest fear regarding surgery is ending up worse off and then having to face more and more surgeries down the road. Just read the posts in this forum as well as others.

                            Best of luck to you and hope you make the decision that's right for you. Keep us posted.

                            Chris

                            Comment


                            • #15
                              Chris

                              I hear you on "darned if you do, darned if you don't." You will get a good second opinion with Hammerburg. I have been a patient of Orthopedics and Scoliosis, LLC for 33 years with Dr. DeWald and they are among the best.

                              Good luck
                              Sue
                              48 year old Female
                              3 curves...35, 56, 43
                              Proud wearer of Milwaukee Brace in the 70's...and hated every minute of it.

                              Comment

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