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need inputs on the impact of a long fusion - help me decide

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  • need inputs on the impact of a long fusion - help me decide

    I've been told that I need a fusion between T2 and L2 which seems like a really long stretch.

    Welcome hearing from people with similar fusions. Especially any experiences people may have had around

    1. Impact to flexibility and quality of life post surgery.
    2. Stress on the first un fused vertebrae. Have folks had to go in for additional procedures due to the complications to the vertebrae below the curve.
    3. Recovery time.

    I've got 3 curves. Lumbar curve 37 degrees, lower thoracic right (T6 - and lower) 60 degrees, upper curve 37 degrees and am 30 (male). About a year ago my thoracic curve was 57 degrees.

    By delaying surgery do I risk anything. I've heard the post surgery correction reduces as the curve increases.
    Does it also affect the length of the fusion? Might I require even more vertebrae fused if I held out.

    I am torn about what to do because the surgeons I've consulted seem to be on the fence in my case (one is strongly for it, one doesnt think it warrants surgery and another says both surgery and waiting would be reasonable).

    Btw I don't have any extreme or unbearable pain. In fact its mostly a nagging throbbing on the left chest and the rib cage on my right back. My S curve is also pretty well balanced though I seem to be losing height.

    thanks
    Dan

  • #2
    Hi Dan-I had three curves too. Upper, I think 60, thorocolumbar 95 & a real small low curve by the base of the spine. I believe I was told that the real low curve was eliminated, the 95 was reduced to about 60 & the upper was left alone. I think I was told several mths before surgery that I would be T-2 to sacrum. But then on pre-op, my surgeon said they would try a new method of correcting my major curve(95) & if they could get it to a acceptable correction they would do that & fuse just the lower part of the spine. They were able to go that route & I am fused T-11 to L-5. I have good flexiiblity & don't notice much change now except for the stiffness still on my left side(incision side).
    That makes it a much harder decision if the surgeon's you consulted have opposite opinions yet I think it is good to get several opinions. Was curious who the surgeon's were? It is also good you have no pain. I did not have much either but my major curves made it a decision I had to face & make.
    I'm sure you will here from some T-2-L-4,5 people here.
    As far as stress on the vertebrae below the fusion, I just can't worry about that. Who knows what the future brings....Lynne

    Comment


    • #3
      Hi Dan,

      THis is indeed a difficult decision. You didn't mention how old you are. I had my long fusion done 7 months ago from T5-L5. I was 47. In some ways, I wish that I'd had it done earlier--maybe in my 30's before I had so much damage done to my body (SI pain and sciatica) plus the S curves kept progressing ( from 60 and 60 degrees to 72 and 77 in 10 years). I got about a 50% correction, which is considered a good correction. I was disabled from it for two years before finally having the surgery (which was not offered to me before that time).

      If you are in your 20-30's and not in pain or disabled from any activities from it, you might want to wait and watch the progression of the curves. The surgery at the top of your back cuts a lot of those muscles around your shoulders and there is a lot of pain and healing to go through before you are able to even move your arms and shoulders much. Scar tissue forms along the incision and when you get out of your brace, there is a lot of burning when you start moving your arms and muscles in the back again. If you do too much, or lift too much weight, like over 10 pounds or so, you will pay for it with pain and stiffness, sometimes inflammation. At 7 months postop, I am still having trouble at the top of my rod (T4-5) and have to put an ice pack on it almost everyday.

      I used to have a job where there was a lot of lifting involved, 30-40-50 or more pounds, and there is no way that I will be able to do that again, so I am re-training for office work. Even that bothers me because of bending your neck/shoulders forward pulls above the top of the rod. THere is more stress on the unfused areas. I also still wear back support for vacuuming/lifting as it is hard on my lower back. Maybe the lifting/strength thing is different for men than women. Any men on here and how much strength did you get back?

      Anyways, in short, I am glad that I had the surgery and am straighter and don't have to worry about the curve progressing worse and worse. But you need to know before having it that it is a very long, slow, painful recovery and you can't quickly go back to what you did before (depending on your age, of course) and your back is definitely not the same after-stiff, achy, numb around the hardware and you move a lot slower.

      I'm not worrying about future surgeries to continue the fusion. Most of us will just face that if/when we have to.

      Read through other threads/posts on this forum, especially 1st time surgical and you will learn a lot that may help you. I read this forum for a year to get the courage to have surgery. Good luck to you and let us know how it goes.

      Deb
      age 48
      surgery 7/24/06
      for T72,L77
      50% correction
      Last edited by Cakedec; 03-11-2007, 06:40 PM.

      Comment


      • #4
        Hi Dan,

        I've been fused from T1 to L4 for the past 13 years (I was originally fused from T1-T12 as a child 21 years ago when I was ten, but they left my lumbar curve until I was 18 to give me a chance to grow). My curves were 76 and 55 degrees before surgery.

        I have loads of flexibility (I'm hypermobile anyway) and can even bend over and touch my toes!! And the two remaining discs at the bottom of my back are absolutely fine

        Good luck!

        Toni
        Last edited by tonibunny; 03-12-2007, 02:16 PM.

        Comment


        • #5
          Waiting or having surgery

          Dan:

          Welcome to the group. I don't know how much help I can be as I haven't had surgery yet, but I am a sponge and read a lot about it as I know I am going to set a date soon. I know that left thoracic (which I have) is concidered more normal in a man than in a woman. So, you probably do not have any underlying reason for that curve. I actually have three curves too, but my smaller curve (neck) is under 10 degrees, so they don't call that scoliosis.

          As far as choosing between surgery or waiting, I know that usually there is a structural curve that is the dominant curve. Other curves may be structural or non-structural. This is determined by bending x-rays. Non-structural curves correct more easily and are more flexible the earlier you have surgery. This is true of structural curves too, but to a lesser extent, as these curves are more rigid by nature. The longer you wait, the more rigid all of the curves become. Eventually the non-structural curves become structural due to rigidity.

          If there is anyone out there with actual experience, please correct be if I;m wrong. However, I hope this helps some.

          Ann
          Last edited by Houston Curves; 03-12-2007, 10:16 AM.
          44 year old female
          Surgery on Nov. 1, 2010
          Dr. Darrell Hanson, Methodist Hospital
          Posterior Only, 9 hours
          Presurgical: T 61 Degrees, L 58 degrees, with 15 degrees of thoracolumbar rotation
          Postsurgical: T 26, L 25

          Comment


          • #6
            Dan,
            I had a long fusion done 18 years ago (T4-L4) - it didn't cause me any problems (except muscle aches and pain) until two years ago. My initial curves progressed quickly, and I was 13 yrs. old. B/c I still had growing to do, there wasn't really any other option. I was also slightly overweight during this time. I was never really athletic, but I played softball, and more recently was able to do yoga (some moves, like bridge, I couldn't). I could touch my toes. My bottom vertebrae did go, but my specialist suggested that it was b/c I had a long fusion due to big curves at a young age. I know that I'm one who's had a revision, but I wanted to let you know that I have a long fusion, and had mobility with it.
            Cena
            Nov. 2006 - revision surgery
            Aug. 1992 - revision surgery for hook removal and pseudoarthrosis
            July 1989 - Cortrell Doubosett procedure - two rods and fusion T4-L4 (age 13)

            Comment


            • #7
              Hi Dan,

              I had spinal fusion done 3 months ago... From T2 to L2. I was first under the impression that my fusion was going to be from T3 to L2, but right before entering the surgery, my surgeon told me it was from T2 to L2...

              I am 23 years of age and did not need to wear a back brace during my recovery period. I have never been in so much pain in my life. I do not know if the pain would be comparable to giving birth, but regardless... Post-surgery, I was asking for pain killers practically every hour in the hospital. I didn't like using the PCA pump so much because of my petite figure, I could not tolerate to its side effects...

              Not until 6 weeks post-operation did I start to feel better with the ability to walk around the house. By then, I also went back to work as an analyst that has a regular 9 to 5 desk job. At the same time I returned to work, I also started physical therapy... I highly recommend physical therapy although my surgeon did not. My walking stance went from walking hunched over taking baby steps to walking half the pace of a normal person. Pain is not completely gone; the hours I work creates a lot of stress and tension on my back... I have discontinued using pain killers only because I have a high tolerance for pain. As for flexibility, I have yet to test the waters and see how flexible I am... Luckily, my physical therapist has encouraged me that I would be able to do a bridge in the near future.\

              My life so far... I would be too exhausted to have a social life after midnight. Truthfully, I limited myself to home and work in the past 3 months to rest and keep myself out of harm's way, and until recently did I extend my personal curfew to 1 am and starting hanging out with friends again. The stress on the unfused vertebrae is extensive with pain coming and going only because I have a desk job sitting and staring at a computer monitor for 8 hours. As for recovery, the time that it will take me to recover is probably less than yours being that I am still in my twenties...

              Anyways, best wishes to you... Feel free to contact me with any further questions.
              Sandy
              23 year old female, Analyst, Maryland
              Diagnosed with scoliosis at age 11; wore the same brace for 3 years and never saw a doctor again until age 23
              65 degree curve reduced to 28 degree after surgery
              Posterior spinal fusion (T-2 to L-2) with segmental instrumentation and iliac crest graft surgery, December 4, 2006
              Dr. John Stinson, The Orthopaedic Center, Rockville, Maryland

              Comment


              • #8
                I'm sure its individual but I am amazed by my wife's flexibility at almost 6 months post op. She is fused T11-S1. She can just barely get to her toes and has trouble reaching to get things from the ground using her knees but she can do it. She doesn't report any trouble driving. She asks me to help sometimes with socks and lace up shoes, but it seems less and less. I suppose her case is different than a long thoracic fusion but I think you adapt and get more flexible elsewhere. I help her stretch her legs. We had her PT give me a couple of lessons.

                Comment


                • #9
                  OK...I'm a little nervous now

                  Thanks Dan for starting this thread. I just saw Dr. Boachie yesterday and he recommended surgery. I would be fused from T3 - L3 and I thought that would be a long stretch as well.

                  Based on some of these posts and some other posts on another thread, I'm a little more nervous about going through with the surgery. My pain at this point is basically muscular, but it seems that there's a possibility it would be much more than that after the surgery. Feeling the hardware or bones sticking out frightens me!

                  I'm the most concerned about how high I will be fused and the limitations on mobility. I just don't know what to do!
                  MishP
                  38 y/o
                  Diagnosed with Scoliosis at age 6 - Bracing didn't help
                  Brace off at age 12
                  Saw Chiropractor/massage therapist
                  Pre-op
                  Upper Curve - 115 degrees
                  Lower Curve - 85 degrees
                  9/18/07 Anterior/posterior surgery w/Dr. Boachie-Adjei
                  Fused T2-L3
                  Not sure of post-op correction

                  Comment


                  • #10
                    Hi Dan,

                    I just went through the surgery myself from T2-L2, on Jan. 12. I am not yet 3 months out but I do have a lot of flexibility I believe. I can turn my neck all directions without any problems, and I can twist at my waist a bit though I try my best not too as the surgery is still recent. I feel that in a few more months and later down the line I will have 90-100% of my prior flexibility back. I've never been able to touch my toes and I don't expect to be able to later, but as far as driving and using the toilet and such, I have enough flexibility that it isn't a huge issue. All of that is based off of twisting though. I can bend at forward at my waist a bit but again I try not to since my surgery is so new.

                    I am younger and was always active, so that might be playing a part now. I decided to have my surgery done now (at 28) rather than later in part becuase the younger you are, the more flexible your spine is, so the better correction the surgeon could get, I was shrinking rapidly and didn't want to end up much shorter, and the younger you are the faster you typically bounce back.

                    Admittedly, there are moments when I ask myself why I went through with the surgery, but being that I am still at home recovering and frustrated by some of the pain and sensations my body is currently going through, that is understandable. When I look at myself in a mirror though and I see how much straighter (my stomach is no longer squishing itself on the sides either due to the former S of my curve) and how much taller I am, and I realize I should (hopefully) never have to deal with scoliosis bothering me again, and I relieved that I choose to have the surgery. The other day I was even able to fit back into my prom dress! Something I have not been able to do for a long time because of the increasing growth of my former rib hump.

                    Good luck with your decision. Feel free to contact me if you have any more questions.

                    Jennifer
                    28 years old
                    Wore brace for 3 years as a teen
                    Successful surgery with Dr. Lenke on January 12, 2007

                    Comment


                    • #11
                      just told about long fusion with prof fairbanks at nuffield uk

                      hey everyone
                      i had my first consultation in 13years yesterday and found out that my curve is a whooping 80 degrees (c curve, thoractic right side), it was amazing to see my spine xray after so long, we even bought a disk with the xray on, like going to a theme park and getting a picture of yourself on the log flume . They wanted to operate when i was 15 (and curve was 60 degrees). Anyhow i went in and he asked me why i was back and i said i wanted to have an operation (it was so nice for me to tell Prof Fairbank what i wanted doing and not him telling me what i had to do!). i will be fused from T3 -L3 so pretty much my whole back, he was very confident and i feel that getting the operation now aged 24 i will recover quicker. He said that he probably wont get a great correction (and wouldn't tell me what the curve could be reduced to) but it will stop the progression, he will remove 2 inch sections from about 5 ribs to remove rib hump.
                      After 13 years of worry i am finally going to have the operation as i have decided that the anticipation/ worry of the operation is only equal or less than that of the progression (i dont want to be 40 with 100 degree curve in lots of pain) so he said he will make it after september and before xmas.
                      I was told i will have to wear a brace for 3 months and after the three months i will be pretty much back to normal (only prob alot stiffer) and fully recovered 1 year post surgery.
                      Has anyone else either had prof fairbacks or been to the nuffield hospital in oxford or had a similar operation
                      thanks for reading
                      sam/ the optimist

                      Comment


                      • #12
                        Congratulations on your decision

                        Optimist:

                        Congratulations on taking control of your future! It's a big descision and you have taken a huge step toward your future!

                        Ann
                        44 year old female
                        Surgery on Nov. 1, 2010
                        Dr. Darrell Hanson, Methodist Hospital
                        Posterior Only, 9 hours
                        Presurgical: T 61 Degrees, L 58 degrees, with 15 degrees of thoracolumbar rotation
                        Postsurgical: T 26, L 25

                        Comment


                        • #13
                          Surgury thoughts.

                          Dan.

                          It looks like you have gotten a lot of good information here.

                          I was fused T7-L2 in 1986. I was very young at the time and I don't remember much about the recovery. I do remember that I had a lot of pain initially, but not so much after a couple of weeks.

                          As far a flexibility, I must say it is reduced. I tend to compensate by using my hips and knees more to bend. It helps to stretch your legs often. I used to be able to touch my toes, but I can't do it right now.

                          After my surgery, my doctor gave me no restrictions on lifting or bending. I did everything that I wanted. The rule of thumb is "if it hurts, don't do it". Several surgeons have told me that.

                          You will have additional stress on the unfused vertebrae. It was 15 years before I had any correction done on my back. I had some pain over the years, but it was minimal. I had surgery in 2000--rod removed and fusion repaired. Now, I will probably get my fusion extended,

                          I never regretted having the surgery done. I had an S curve 42 and 46 degrees. It progressed very rapidly and I was told that it was likely to get worse quickly if I did nothing. So my situation was very different from yours. I wasn't in any pain either. I guess the surgery decision is a matter of what you are comfortable with.

                          Some of your questions might be best answered by the doctors who are for and against surgery. See if you can get some questions answered via phone or email. It saves making another appointment.

                          I wish you the best, no matter what you decide.

                          Comment


                          • #14
                            thanks

                            Thanks folks for the insights

                            Dan

                            Comment


                            • #15
                              I have 15 levels fused and my flexibility is very, very good, as in I can touch my toes without bending at the knees. But then, I was like this beforehand. I always stretch after my workouts to maintain that looseness.

                              Comment

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