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  • Home but thinking I'm sliding backwards in progress...

    Hi everyone. Well, I'm finally home. My surgery was May 9th and had a few complications. I developed a blood clot in my left lung then came down with pneumonia. To put the cherry on top, I then had to be intubated...(not fun). Anyway, I then was transferred to a rehab facility where I was for a week. Here's the issue I'm facing: while in rehab I was fine. I was doing 3 hours of rehab a day and "only" taking two naps.

    Now that I'm home, I find myself not being able to stay awake. I want to sleep constantly but I'm not taking any of the hard narcotic pain relievers. I really am lost on what to do about this. I find that people are thinking that just because I'm home, I should be awake, etc. Has anyone else felt this? If so, what did you do? I start outpatient rehab on Wednesday and am dreading it because of my sleepiness issue.

    I'm also wondering what everyone else did once they got home from either the hospital or rehab. Did you stay in bed? Out of bed? Also, I am wearing the ever-famous brace which I absolutely hate. My hips ache constantly and I hate wearing it. Did anyone else have to wear a brace and if so, how long? My Dr. said the only time I don't have to wear it is in bed and the shower. But for how long?

    Thanks everyone!!!!
    Chris

  • #2
    Originally posted by Christyne View Post
    Hi everyone. Well, I'm finally home. My surgery was May 9th and had a few complications. I developed a blood clot in my left lung then came down with pneumonia. To put the cherry on top, I then had to be intubated...(not fun). Anyway, I then was transferred to a rehab facility where I was for a week. Here's the issue I'm facing: while in rehab I was fine. I was doing 3 hours of rehab a day and "only" taking two naps.

    Now that I'm home, I find myself not being able to stay awake. I want to sleep constantly but I'm not taking any of the hard narcotic pain relievers. I really am lost on what to do about this. I find that people are thinking that just because I'm home, I should be awake, etc. Has anyone else felt this? If so, what did you do? I start outpatient rehab on Wednesday and am dreading it because of my sleepiness issue.

    I'm also wondering what everyone else did once they got home from either the hospital or rehab. Did you stay in bed? Out of bed? Also, I am wearing the ever-famous brace which I absolutely hate. My hips ache constantly and I hate wearing it. Did anyone else have to wear a brace and if so, how long? My Dr. said the only time I don't have to wear it is in bed and the shower. But for how long?

    Thanks everyone!!!!
    Chris
    Chris, first of all, the first few weeks at home are difficult for many of us for various reasons, but time really does heal. You've been through such a lot (sorry to hear about that) and your body needs to rest. Right now it's healing at a rate of knots. You are lucky you are able to sleep because many find it very difficult and get very down about it. This is the time to give into it, sleep as much as you can, eat red meat if you're a meat eater, or other iron-rich foods (because I'm wondering about your blood count) and plenty of water. Try for one short walk per day, then sleep if you can. This time will pass.

    I can't help with the brace because I've never had one but feel for you having to wear it!

    Good luck and I hope you get some brace-wearers come in and reply.
    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


    • #3
      Hi Christyne,
      Do try to give yourself more time. The tiredness lasts a very long time. It was at about 1 1/2 years that I felt sooo much better.I did not face as much as you did with the breathing issues. I did wear a brace--everytime I was up until 3 months. Then I wore it while I was at work and always in the car for another 3 months. It did rub and I had to pad it. I did not stay in bed--I do not think you DR will want that.I did walk every day and increased the time as I could.I am 4 years later and I still need to walk everyday to keep thing mobile.If the brace is hurting your hips, have someone check it. Also, my hips hurt while I laid down and my Dr said it was because of the fusion.
      Do take very good care of yourself
      Jackie
      T10-pelvis fusion 12/08
      C5,6,7 fusion 9/10
      T2--T10 fusion 2/11
      C 4-5 fusion 11/14
      Right scapulectomy 6/15
      Right pectoralis major muscle transfer to scapula
      To replace the action of Serratus Anterior muscle 3/16
      Broken neck 9/28/2018
      Emergency surgery posterior fusion C4- T3
      Repeated 11/2018 because rods pulled apart added T2 fusion
      Removal of partial right thoracic hardware 1/2020
      Removal and replacement of C4-T10 hardware with C7 and T 1
      Osteotomy

      Comment


      • #4
        Are you taking muscle relaxants? Those can make you very sleepy, too. I agree that you should rest and sleep as much as you need to/want to. Then when you are awake, try to walk a little bit each time. Even if it's just in circles around your kitchen or whatever. Walking is important to get the blood flowing and keep muscles from atrophying.

        Best wishes,
        Evelyn
        age 48
        80* thoracolumbar; 40* thoracic
        Reduced to ~16* thoracolumbar; ~0* thoracic
        Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
        Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
        Not "confused" anymore, but don't know how to change my username.

        Comment


        • #5
          Hi Chris...

          Your sleep patterns may go all over the place, and I don't think it's anything to worry about. You may find that you can't sleep at all in a week or two. It's really pretty normal. If possible, you should try to get in a couple of short walks every day. If you can't, don't beat yourself up. If it goes on for more than a week, you should probably talk to your surgeon. If you're off all narcotics less than a month postop, you're doing REALLY well. What new drugs are you on by the way?

          As far as the brace, you should follow your surgeon's instructions. You might, however, want to call his office and mention that the brace is making your hips sore. It's possible they can make adjustments to fix that.

          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
            I agree with all of the above. I had my brace modified twice. I still have a love/hate relationship with it, but it does not hurt. It should not hurt your hips, so call for a revision. Mine dug in my front when I sat down....I also developed a sore on the side before they made it shorter.

            Be patient with your sleep/rest. I am not a patient person, so I have problems with that. Never eat in bed. Try to get outside once every day if only for a short while. That helped me. Be patient with your recovery.

            Susan

            Yikes!! I just reread that your surgery was May 9th with complications.....give yourself some credit girl and don't worry about being in bed!
            Last edited by susancook; 06-04-2013, 03:39 AM.
            Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

            2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
            2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
            2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
            2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
            2018: Removal L4,5 screw
            2021: Removal T1 screw & rod

            Comment


            • #7
              when I first came home, I was like a baby; I'd eat, sleep & poop! LOL I remember taking many naps during the day. Your body needs the rest, so if you feel like sleeping do it!
              __________________________________________
              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


              • #8
                I'll just echo what many of the others have already said. Your body right now is wanting you to rest. That is its primary defense mechanism against the trauma it's been through. Eat healthy, nutritious meals, and do your walking. In other words, take care of yourself. But sleep as much as your body tells you to as long as you also get up and get around some too.

                About the brace-- I wore a brace and it did need to be adjusted, so you do need to mention that it is hurting you. Mine was tight in the armpits and also in the leg/hip area. The orthotics fellow needed to cut more out so that it fit me better. It was ok when standing, but horrendous when I sat down. Fortunately, I got mine while still in the hospital, duly noted, and we were able to stop by on our way out of Chicago for the changes.

                Best wishes! Listen to your body!
                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


                • #9
                  You all are the best!!!!

                  Hi everyone! I tell ya, if you all were standing in front of me, I would be bowing down to each and every one of you. I feel a lot more comfortable right now. I think my major issue right now is the muscle spasm/pain/numbness I'm feeling in my hip area. Which actually makes sense since the new rod went into my sacrum.

                  Again, thanks everyone!

                  Comment


                  • #10
                    Yes, let yourself rest!!! Sleep is nature's cure. Get some books you've wanted to read, and then let yourself fall asleep to them! Fusion surgery is bad enough, but with your complications, your body needs rest. In my last round of surgeries, I had deural leaks and then got a staph infection. I think I slept through most of the next four months. Now, when I am in pain, my body just shuts down and I go to sleep. So you are developing a really good pain strategy!!! When all else fails, play Sleeping Beauty for a while! Have compassion for yourself. Your recovery is not a race. You deserve to do whatever it takes to feel better. I will think of you each time I take a much-needed nap!
                    Fused T10-S1 and C5-7
                    Adult Onset at 25, with first surgery at 38
                    Six total surgeries, including one for staph infection
                    Found relief from pain without pills

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