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  • Don't have Scoliosis, but...

    I'm recovering from a lumbar L-4/L-5/S-1 fusion done on Oct 22, 2008. I am wondering (hoping) if I am welcome here, because I can't find a good board anywhere.

    Obviously, I won't bother anyone if I am alone. I do realize the purpose of the board here is for Scoliosis related issues. But I too need help and support, and can offer the same insofar as my situation.

    Seems like such wonderful folks around here, and it also seems that the Moderation is very reasonable. I need BOTH.

    My best to all.
    Paul (57 years old)

    ........

    Went in with lower back pain, diagnosed w/ Myelopathy late '07.
    Correction: 4-Level Cervical surgery Jan '08
    (Lumbar region continued to deteriorate...)
    Correction: L-4/L-5/S-1 Anterior fusion Oct 22, '08
    As of Jan 14, 2009... on my 11th week out...

    Both procedures: Rush Medical, Chicago.

  • #2
    I welcome you here and I am sure others will welcome you also. I am sure your pain and suffering before and after surgery is just as real as any of us here. Tell us a little about yourself such as age, where are you from and who did your surgery. I am sure your recovery will be very similar to mine and many others here except with a straight spine, your back muscles don't have to make adjustments after the surgery. Take care, and if you have specific questions, especially about recovery, people will help you with their experiences.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

    Comment


    • #3
      Thank you Sally,

      Here’s what I posted on another board just a week or so ago, where I was hoping to join some sort of community. I wouldn’t say anything different today, so I’ll just quote what I said there:

      (Also, you will see that I had cervical spine surgery in the beginning of ’08. Four levels. So, they got me at the top and the bottom in one year, so yes, there has been some SIMILAR suffering. If I am welcomed here, I will fill out my profile info ASAP. Thanks again, Sally.)

      Paul

      -=-=-=-

      Hello everyone!

      I had an anterior fusion on Oct 22, 2008, and looking for others to join with me during my recovery. I’m on my 10th week, and still dealing with some pretty significant pain, but I have made very good progress since day-1. I had no idea it was going to be so difficult in terms of “getting back to normal”.

      I’ve been out of work since Nov, 2007, and had Cervical spine surgery Jan 30, 08 (diagnosed with Myelopathy then). It all started with Lumbar pain. Long story short, I ended up needing L-4-L-5-S-1 fusion after all. So ’08 has been the worst year of my life, and I am hoping now to have a better year.

      Is it within the rules to have a Topic such as this? Where we can discuss various aspects of our respective conditions, the progress or lack thereof? I’d also like to discuss our walking/exercise progress, etc. What some of you do, what I do, and how it affects our recoveries? Pain levels, etc.

      Thank you. I hope this board is open for such discussion, and I hope I and others benefit by it.

      Mod’s, if I am doing something wrong by opening a somewhat “non-specific” Subject, PLEASE have pity on me and kindly direct me to the appropriate Rules. I’m just looking for help and friendship along the way. I will bow to your every wish and read and reread every link you suggest. So help me get it right, if I have transgressed. If this is OKAY, then please, people, join in and let’s HEAL!
      Paul (57 years old)

      ........

      Went in with lower back pain, diagnosed w/ Myelopathy late '07.
      Correction: 4-Level Cervical surgery Jan '08
      (Lumbar region continued to deteriorate...)
      Correction: L-4/L-5/S-1 Anterior fusion Oct 22, '08
      As of Jan 14, 2009... on my 11th week out...

      Both procedures: Rush Medical, Chicago.

      Comment


      • #4
        SRF-- I think it's fine that you are posting here. Welcome aboard! You have many of the same issues from your surgery and your recovery, so I'm sure it will be good for you-- and for us too.
        71 and plugging along... but having some problems
        2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
        5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
        Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

        Corrected to 15°
        CMT (type 2) DX in 2014, progressing
        10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

        Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

        Comment


        • #5
          Sorry, I'm 57. A carpenter/woodworker/decorative painter. I was building my own house with my own hands before I got sick. We are living in the home, but most of the interior is still they way I left it in late '07.
          Paul (57 years old)

          ........

          Went in with lower back pain, diagnosed w/ Myelopathy late '07.
          Correction: 4-Level Cervical surgery Jan '08
          (Lumbar region continued to deteriorate...)
          Correction: L-4/L-5/S-1 Anterior fusion Oct 22, '08
          As of Jan 14, 2009... on my 11th week out...

          Both procedures: Rush Medical, Chicago.

          Comment


          • #6
            Originally posted by Susie*Bee View Post
            SRF-- I think it's fine that you are posting here. Welcome aboard! You have many of the same issues from your surgery and your recovery, so I'm sure it will be good for you-- and for us too.
            Thank you Susie,

            I DID get help here already, and revived the old Post-op Pain Meds Survey thread. That was a big help to me. Thank you, thank you, thank you! <Big smile>.
            Paul (57 years old)

            ........

            Went in with lower back pain, diagnosed w/ Myelopathy late '07.
            Correction: 4-Level Cervical surgery Jan '08
            (Lumbar region continued to deteriorate...)
            Correction: L-4/L-5/S-1 Anterior fusion Oct 22, '08
            As of Jan 14, 2009... on my 11th week out...

            Both procedures: Rush Medical, Chicago.

            Comment


            • #7
              You're in as far as I'm concerned.

              If you haven't noticed, there are relatively few posters. It's a slow board to say the least.

              That's not to say that is why I am glad to see you. I think your situation is relevant in terms of treatment, recovery, etc..

              In re rules, moderators, etc. this place operates very much like an unmoderated forum in my opinion. In the spectrum of things that have been posted, your situation is pegged squarely at the "on topic" end.

              I'm glad to see another poster.
              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


              • #8
                Welcome Paul!

                Wow, 2 surgeries in one year, that's big. I hope 2009 proves to be much better for you. Your last surgery was close to mine, I had T3 to L3 fused Oct 15th of 2008.

                How are you feeling now? I had my parents with me for about 7 weeks after I came home from the hospital, and it helped tremendously. I've been off my pain meds since last Saturday, and though I wake up with a little pain (or stiffness, I'm not sure) I manage ok. I've got about another month left of physical therapy 3x a week, where they really work me. I'm able to do laundry, shop, cook for my family. One thing I'm NOT doing is much cleaning. That's what teenagers are for.

                I hope you stick around! Besides, we could use more of a male presence.
                __________________________________________
                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


                • #9
                  Wow, thanks!

                  I'm so grateful to have even a few folks, as you say...

                  My so-called therapy is essentially walking. My next appointment is March 5, '09, and my last one was Dec 4, '08. In my case, my surgeon told me it takes 4 - 6 months for enough bone growth to show up on the x-rays. So since my surgery, I have not been allowed to Bend, Lift, or Twist (BLT). It is my hope that I will be given the go-ahead for SOME sort of specific therapy for my back after the March x-rays.

                  Walking is good. Stair-stepping is good. Very light leg and upper body exercises are good, but NOTHING to stress my back at all. I have no access to a pool, but if I did that would be good.

                  I'm in the Midwest area. So walking outside is out of the question for me, especially with the ice. Within the 1st 6-weeks, I was supposed to have worked up to 1.5 miles per day. I was in a brace from hell, with a locking bar down my thiigh, so walking very not only difficult, it was dangerous. I could unlock it for sitting only, and remove it for showers and sleep, only.

                  So I do laps in my house (and stair-stepping).

                  1-lap = roughly 45'.
                  26-laps (per walking session) = 1170'

                  I try to do at least 6 sessions of 26-laps each, broken up during the day (rest between) to reach my approximate 1.5 miles per day. I have done as much as 8 sessions.

                  When i started out I could barely make 8 - 10 laps, and I was very "wobbly". I worked up to 22-laps. Now I do 26.

                  The last 2-days I have started the day with 1 session of 52-laps. (I tried this a few weeks ago, and found that it was too much.) I think I might be ok with this now, however.

                  I had also incorporated stair-stepping into my routine, though in the last few days I have backed-off on this do to pain-levels (I'll post more on this in the Meds Survey Thread). Anyway, I again started slow and easy, and worked up to 8 up-and-down non-stop sessions, and was doing about 4 - 6 of these and soon backed WAY down... WAY too much at the time. I had since successfully done as many as 6 - 8, 4 up-and-down non-stop sessions, per day/evening. This was much better, and frankly more sane! <smile>

                  Until now I have been judging my progress based on pain-levels mostly (because I have been in a lot of pain for 13 months, and pain levels was one of two reasons for the surgery to begin with), and actual physical strength/ability secondly. Now I am at a cross-road with this approach (due to reading here) and have made a change, and I think it is for the better and more sensible.

                  All in all, my recovery is much slower than what I had expected, but in fact I have been making progress and except for some sciatic pain I have not had what I would consider to be a set-back in any way. I was told I could have stabbing pains in my thighs for up to 3-months, and I haven't reached 3-months yet... so I am not complaining.

                  For the most part, every "morning" is just a tad easier. Ha ha ha... I say "morning" because me schedule is so messed up. I intentionally SLEEP as long as I can and I set NO alarm, so I can "get up" any time between 9:00 am and 3:00 pm... but now this might change again, because I am changed my medication philosophy/approach COMPLETELY.

                  Thank you so much for the welcomes!

                  I'm going to type up some stuff over at the Med Survey thread.

                  I'm sure everyone's surgeries and corrections are different, but are there fusions involved? I was assuming yes, but I was just curious. Does the Scoliosis solutions vary greatly? I'm sorry... I promise I will read more!

                  Paul
                  Paul (57 years old)

                  ........

                  Went in with lower back pain, diagnosed w/ Myelopathy late '07.
                  Correction: 4-Level Cervical surgery Jan '08
                  (Lumbar region continued to deteriorate...)
                  Correction: L-4/L-5/S-1 Anterior fusion Oct 22, '08
                  As of Jan 14, 2009... on my 11th week out...

                  Both procedures: Rush Medical, Chicago.

                  Comment


                  • #10
                    Hi Paul
                    I am Louisse from the UK and I just wanted to say Hi and welcome you to this site.
                    It has been an incredible resource and support to me before and now after my op and I have gained an incredible amount of knowledge and peoples experiences - so take the time and cruise the site - you will be reading for hours - I found it quite addictive initially, I must admit!
                    I had an upper 'C' scoliosis curve and was fused T3 - L1 on 4 September 2008.
                    I am sorry to hear about your two recent ops and wish you well for the future.
                    I'm off for a nice hot shower - thats always good!!!
                    All the best
                    Louisse
                    Diagnosed aged 17 thoracic curve of 40°/48? given brace worn for short time but was then told that I had stopped growing and it wasn’t likely to get worse. Follow ups ‘got lost in the system’ and I chose to ignore until age approx 33, after two children. Now nearly 42yrs curve was progressing (last xrays 67 degrees) and increasing 'backache' so surgery (posterior T3 - L1) went ahead beginning of September 2008 in UK - thoracic curve now approx 20° and I look a lot straighter!

                    Comment


                    • #11
                      Originally posted by StevieRayFan View Post
                      I'm sure everyone's surgeries and corrections are different, but are there fusions involved? I was assuming yes, but I was just curious. Does the Scoliosis solutions vary greatly?
                      I'd say virtually every adult (excluding people who post about their kids' scoliosis) has been fused or is in the chute. There are a scant few exceptions.

                      And of the parents who post here, I'd say it's half and half between those whose kids are fused and those who are braced or have non-fusion surgery like stapling.

                      I'm sorry... I promise I will read more!
                      Please don't be sorry. I think you have already contributed much to the forum.
                      Last edited by Pooka1; 01-15-2009, 05:31 PM. Reason: subject-verb agreement
                      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


                      • #12
                        Yep, lots of us have been fused-- and some others are courting surgery. I had 15 vertebrae fused, as my signature shows, so I have a long fusion. There's a variety of fusion lengths and you might see some of the info in signatures.

                        I sent you a PM (private message)-- if you don't know how to retrieve PMs, you can access them by clicking on "Private Messages" found in the upper right corner just below where it says "Welcome, StevieRayFan".
                        71 and plugging along... but having some problems
                        2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                        5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                        Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                        Corrected to 15°
                        CMT (type 2) DX in 2014, progressing
                        10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                        Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                        Comment


                        • #13
                          Thanks Susie.

                          So we are all mostly fused. Is walking highly recommended like it is for me? Do you break it up during the day like me, or try to go for a mile or more at a time and be done with it?
                          Paul (57 years old)

                          ........

                          Went in with lower back pain, diagnosed w/ Myelopathy late '07.
                          Correction: 4-Level Cervical surgery Jan '08
                          (Lumbar region continued to deteriorate...)
                          Correction: L-4/L-5/S-1 Anterior fusion Oct 22, '08
                          As of Jan 14, 2009... on my 11th week out...

                          Both procedures: Rush Medical, Chicago.

                          Comment


                          • #14
                            Working out in a pool is the best thing. It takes the stress off of your spine while you exercise. The pool where I go has an elliptical, exercise bike, and a treadmill in the water. It is great to be able to work out on the machines without the stress on my back. I also do leg exercises that I learned in PT and do some water walking (forwards, backwards, sidesteps). I do a little swimming (breaststroke) also to strengthen my back.
                            T12- L5 fusion 1975 - Rochester, NY
                            2002 removal of bottom of rod and extra fusion
                            3/1/11 C5-C6 disc replacement
                            Daughter - T7 - L3 fusion 2004

                            Comment


                            • #15
                              Originally posted by StevieRayFan View Post
                              Is walking highly recommended like it is for me?
                              Me too. While I recovered, all I heard from my doctor’s office was walk, walk and then go out and walk some more. I started out doing 20-25 laps around the driveway in my walker three times a day, then I progressed to a cane and would walk up and down the street and then eventually I worked up to two 30-minute daily walks outdoors. I’m so glad I had my surgery during summer. Here in the Midwest the weather is not conducive to walking outdoors during the colder months. Now that I’ve returned to work I use the treadmill in our fitness center.

                              Comment

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