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  • I'm home and having troubles

    Hi everyone,
    Thanks for the kind words and well wishes while I was in the hospital. My husband relayed them to me.
    I returned home Tuesday afternoon and am now officially recovering and rehabing before surgery #2 April 15th. (I think i need a calendar).
    I have such a feeling of pressure and stiffness.......argh! what makes that go away? I am wearing a soft corset but i just feel like stretching. I can't seem to get comfortable either, most chairs don't work for me and as far as reclining, all i can manage is flat on my back on our temperpaedic matress. But even that does not feel great - feels like im laying on a bunch of hardware or something! seriously, it's so difficult to lay on either side - am i doing damage to myself when i lay on my side? I know this sounds so stupid but i just need to rest myself and i don't seem to be able to find relief.
    might also add that while in hospital had a pnuemothorax, chest tube for 4 days of my stay. I'll fill more in later on that - what an experience! wow.
    any advice would be vastly appreciated!
    Thanks
    Julie
    Julie - 51 yrs old

    Dx'd 1973 - 43* thoracic curve / rotation
    Wore Milwaukee brace 1973 - 1979
    Pre-surgery: 63* thoracic / 52* lumbar curves


    Surgeries: P - March 16, 2009 - Fused T3-S2 with pelvic fixation
    A -April 14, 2009 - Fused L5-S1
    Achieved +70% Correction
    Dr. Khaled Kebaish, (and team) Johns Hopkins Hospital, Baltimore


    Standing x-ray
    New Spine 03/19/2009
    New Spine Lateral 03/19/2009

  • #2
    Julie-- it's great to hear from you! Others may have much better advice for you than I do. I don't think I got "comfortable" for quite awhile myself. The only position I could tolerate in bed was flat on my back, but with pillows under my knees. It's taken me a l-o-n-g time to get to the point where I can sleep on my side. Like just recently. Even now, it doesn't last for long-- maybe an hour. I've gotten very used to sleeping on my back. Best wishes as you try to adjust to being at home and getting ready for the next surgery.

    I don't think you'll do damage by lying on your side. My doctor said I could-- it just didn't feel ok at all to me. But everyone's different. Also, time makes the feeling of pressure and stiffness go away. You'll get there! The recovery time is a great teacher of patience. Rest up as best you can for now. Gentle hugs, Susie
    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


    • #3
      Julie,

      I don't think you'd hurt yourself laying on your side. For me, it wasn't comfortable to lay on my side for MONTHS. Like Susie, for at least 3 months, the only way I could be slightly comfortable was laying on my back with pillows under my knees. As far as the pressure and stiffness, it does get better, but it takes lots of time.

      Are you taking your pain meds as prescribed? I wouldn't try to cut back on pain meds until after your next surgery.

      I hope you can get some rest!
      __________________________________________
      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


      • #4
        also adding about chairs--

        The only chairs I could sit on when I first came home for WEEKS were hard backed chairs that I put bed pillows behind me. No sofa's because they were too soft and the leg length on the seat was too long. Reclining was just out of the question. I was disappointed because we had just bought new family room furniture with reclining seats and I thought I'd never be able to sit in them. After maybe 3 months, I can sit and recline in them just fine now. It just takes time.

        Take care of yourself,
        __________________________________________
        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


        • #5
          Thanks so much debbe and susie for replying. Today Chris bought a foam topper for our bed so hopefully my night will go better tonight - it's softer yet still supportive so I'm keeping my fingers crossed! The first night home i only woke to go to the bathroom and slept like the dead. The first time I woke up i had a visual image of a being inside of a Monte Cristo sandwhich - the covers felt so heavy and i was really disoriented Chris is ready for a better night's sleep, which I think he might be able to get because i was able to get myself up into a sitting position from reclining in bed, by myself 3 times today, which means no more nocturnal trips to the potty with me! I also am able to 'do my business' by myself too! yea! It's been a good day.
          Debbe I can sympathize about power recliners - we got new stuff too and i anticipated lots of relaxation time in those cozy chairs - oh well, at least i know you're enjoying yours now - something to look forward to.
          Thanks ladies
          Julie - 51 yrs old

          Dx'd 1973 - 43* thoracic curve / rotation
          Wore Milwaukee brace 1973 - 1979
          Pre-surgery: 63* thoracic / 52* lumbar curves


          Surgeries: P - March 16, 2009 - Fused T3-S2 with pelvic fixation
          A -April 14, 2009 - Fused L5-S1
          Achieved +70% Correction
          Dr. Khaled Kebaish, (and team) Johns Hopkins Hospital, Baltimore


          Standing x-ray
          New Spine 03/19/2009
          New Spine Lateral 03/19/2009

          Comment


          • #6
            Ah Julie! Congrats on having surgery #1 over with.

            My Surgeon told me in hospital that I could lie whichever way was comfortable. As it was, no way was comfortable, but it was the bed that was at fault because as soon as I came home and lay on my bed, I could lie in whatever position I wanted, with comfort. I know everyone's different but I am equally comfortable on my sides or back.

            I can't sit in a chair and lean back. The feeling of the rods in my back is not pleasant but I guess I will get used to it in time. I am having no trouble walking except when I'm feeling a bit woozy, due, I think, to low blood pressure. (That's what was causig it in hospital anyway.)

            All the very best for your upcoming surgery and hope you'll be home and on the mend very soon after.
            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


            • #7
              Originally posted by doodie View Post
              I returned home Tuesday afternoon and am now officially recovering and rehabing before surgery #2 April 15th.
              I'm interested in why your doctor decided you needed two surgeries. I have heard about this happening but just wondering why your doctor thought it is best for you. What are the two surgeries? And why so far apart?

              I haven't had my surgery yet but I've heard the first couple weeks are hard. Hope you are feeling better REAL soon.

              Sheri
              56 and haven't had surgery yet
              Exact date and type of surgery to be set after bending xray appointment on April 27th
              At age 56 my curves measured: 48/60/30 with lots of rotation and getting worse
              Posterior fusion T5-L4 June 30, 2009
              Excellent correction

              Comment


              • #8
                side sleeping

                Jennifer,

                So glad to hear of someone being comfortable sleeping on their side. Rachel also mentioned rolling over into more comfortable positions from time to time. I sooo hope I can do that. I hate sleeping on my back. As a matter a fact, I don't think I ever have! I read a post where some one likened it to being like a turtle stuck on their back....yes, that will be I just know it! We shall soon find out. I guess that's the least to be worried about :O)
                Susan

                Diagnosed at 10, Boston brace from 11-13 yrs old.
                50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
                Surgery Date: April 15 and April 22, 2009
                X-LIF approach for disc repair L5,L4,L3,L2
                Posterior Approach for fusions L5-T5
                Dr. Fox @ Naval Medical Center Portsmouth
                Nice and straight now!!!!!

                Comment


                • #9
                  Originally posted by asccbodypro View Post
                  Jennifer,

                  So glad to hear of someone being comfortable sleeping on their side. Rachel also mentioned rolling over into more comfortable positions from time to time. I sooo hope I can do that. I hate sleeping on my back. As a matter a fact, I don't think I ever have! I read a post where some one likened it to being like a turtle stuck on their back....yes, that will be I just know it! We shall soon find out. I guess that's the least to be worried about :O)
                  Susan-- I was never a back sleeper either, but I have adapted just fine to it, post-op. I think you do what you have to do. It's really not been a problem, even though I would have thought it would be if someone had said, before my surgery, that I'd have to sleep on my back after surgery... Actually I remember trying to sleep on my back occasionally in my adult life because I read it was better for your back and then thinking how I hated it. My preferred position was on my tummy-- or curled up in a fetal position.
                  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


                  • #10
                    Sleeping

                    After my surgery, I slept on my back exclusively for the longest time only because I was only comfortable that way. When I got on either side I felt weird for some reason, even claustrophobic. I don't know why. But as time went on, I graduated to sleeping for short periods on my sides with pillows between my legs. Now,10 months out, no pillows and I prefer side sleeping. I rarely sleep on my back now. But, boy getting my nest ready was a big big routine for the longest time!! Good Luck, you reminded me what it was like in the immediate post op period. It WILL get better.
                    May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

                    March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

                    January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

                    Comment

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