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Thread: Home but thinking I'm sliding backwards in progress...

  1. #1
    Join Date
    Jan 2013
    Posts
    21

    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. #2
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Quote 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

  3. #3
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    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

  4. #4
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    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 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  5. #5
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    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. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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  6. #6
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    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 at 04:39 AM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision 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 + prayer

  7. #7
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    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

  8. #8
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    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!
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

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

  9. #9
    Join Date
    Jan 2013
    Posts
    21

    Smile 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!

  10. #10
    Join Date
    Jan 2013
    Location
    Willington, CT
    Posts
    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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