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Pt II Falling! Worried about effects of meds, sleeo deprivation, pain.

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  • Pt II Falling! Worried about effects of meds, sleeo deprivation, pain.

    Pt II Fear of Falling at Night

    Last and most, I worry about falling, getting up for the toilet especially. A bed rail might help and other adjustments might be desirable too (a high bedside commode?). Waking - rather half-waking - from a sound sleep, could be very dangerous for me. I’m already prone to problems with sleep, and suffered over the summer from extreme insomnia when I had to self -detox from a very high dose of narcotics.

    The insomnia was the hardest symptom. The powerful sleeping medicine ( the only thing that finally allowed me to sleep), threw my coordination off. It was a rough period, and falling several times, I broke furniture and ribs. I didn’t even go to the hospital figuring nothing needed to be done unless I had a pneumo-thorax (perforated lung) . And besides, how to get there? But, yes, it hurt. Seven ribs in all, which later showed up on X-rays.

    That was bad enough, but what could happen after this surgery? Perish the thought!

    I still have trouble getting up , and lose my balance sometimes. Even in the morning, the first few steps throw me off, because of pain in my lower spine. Maybe when I sleep I curl up in fetal position, so uncurling to stand, hurts.

    These are realistic concerns. Basically, I’ll be “walking under the influence” - a risk to myself. My S.I.L reports that after her knee joint replacement, my mother (early 80s) had to be physically restrained from climbing down from her four poster bed to use the toilet when she was half awake. It was the pain medication that affected her. (haha. I’m immune to pain med side effects, having lived with them 24/7 for so long! The only one that still gets me is - you know - constipation! ).

    The “influence” I’m under, will be some combination of: exhaustion, pain, pain medicine, pain medicine withdrawal and/or that sleeping medication. I can’t even count on fluid restriction to avoid getting up at night, since I have neurogenic bladder (it’s probably from cord damage). I may have to self catheterize bedside - done that before - but it requires scrupulous hygiene or bladder infections result. What's wholly unknown, is how post-surgical pain will add to the mix.

    This is not something I can just “will “ myself through. I’m good at the will part (otherwise I couldn’t have toughed it out without sleep so much in my life) . I had to survive on only a few hours sleep/week when detoxing from narcotics. “No choice” is a great inspiration! My insurance didn’t cover a facility to make it easier.

    I don’t see how I can avoid going through it again, though, especially if I’m not allowed to use NSAIDs for the first three months after surgery. Without them, I’ll need more opiates no matter how stoic I try to be. As one surgeon told me, without narcotics, I won’t be able to go through PT which is indispensable - meaning, lots of walking, to start.

    But I dread getting addicted to opiates again, and most of all, I dread the withdrawal. Now I have the added fear of what falling could do to me. The sleep medicine to treat the insomnia is just as bad (no, nothing else works), but the alternative - exhaustion from sleep deprivation - is just as dangerous.

    The nights are what I fear the most. When I get up at night to pee, I won’t be fully conscious and coordinated. If the lights are turned on full blast to wake me, I won’t be able to get back to sleep (unless I take more medicine ).

    Before my surgery for cervical stenosis, I worried about falling (falling could have led to total paralysis), but this is a thousand times worse - maybe because the other was only a possibility, but this would be a certainty. (Do we ever get beyond being endangered by falls?)

    Has anyone else worried about falling - at night especially, or when you’re not fully conscious from exhaustion or pain or pain meds? How did you handle it?
    Last edited by Back-out; 05-20-2010, 10:04 PM.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  • #2
    I definitely worried about it right after surgery....I nearly lost my balance once or twice but managed to catch myself. My wife used to give me grief as I walked with my head down just to be sure I didn't trip. At this point, 2 months post op, I rarely think about falling at all. Of course, now that I wrote this I'll probably fall over getting up to go to the bathroom tonight. Thanks for jinxing me! :-)

    Rich
    Pre-Surgery Lumbar 65 degrees
    A/P Fusion T10-Pelvis by Dr. Christopher Good
    Virginia Spine Institute, Reston, VA 3/17/10, 3/18/10
    Post-Surgery Lumbar 19 degrees, and 2" in height

    Comment


    • #3
      It sounds like this is a very real danger for you. Would it be possible to put your mattress on the floor? And maybe a bed pan nearby? Maybe that would get you through the first few weeks, at least. I realize getting to the floor would be no piece of cake, but if you did it fully conscious you might be able to manage, vs. risking falling when half asleep. Just a thought.

      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


      • #4
        Thank you, Evelyn. Good idea - as long as I remember it's there. Or maybe an extra mattress on the floor next to the bed.

        When no one wrote, I figured they were all afraid to suggest "Depends". I thought of it. A last resort! I think I'll have some on hand as a back up plan, since I don't know how bad it'll get. When I have back up plans, I tend to need them less!

        The main thing is to get through it, somehow. One day and one night at a time. And hopefully, my S.I.L can stay for a good while.
        Not all diagnosed (still having tests and consults) but so far:
        Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
        main curve L Cobb 60, compensating T curve ~ 30
        Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

        Comment


        • #5
          Hi Amanda
          i dont understand.... your worrying seems so....intense..and...all over the place...i think you will make yourself crazy with it!!...do you have a surgery date that is worrying you? i know there are a million things to worry about before this huge kind of surgery...but some system of making a list and checking things off might help... there needs to be some kind of peace of mind before going into this! otherwise, you can "what if" yourself to death!
          if you have a time frame...a surgery date...to plan for..i think it would make things easier...to have a target...and a plan...

          a bed on the floor can be dangerous....it can require some manipulation to get in and out of, if i remember my undergrad days....and could put pressure on other parts of the back that dont need the pressure! whatever bed you buy now you might want to consider how it will suit you after surgery...what feels good now might not feel good afterwards...that is a concern i think every fusion patient has...it has has shown up here on forum in several threads concerning memory foam mattresses and mattress tops...ultimately, it is a guessing game...you cant know how you will feel after surgery til you get there....you can read what others have done in the same situation, but it still doesnt mean it will be true for you...or for me...

          jess
          Last edited by jrnyc; 05-22-2010, 02:06 AM.

          Comment


          • #6
            jess:
            whatever bed you buy now you might want to consider how it will suit you after surgery...what feels good now might not feel good afterwards...that is a concern i think every fusion patient has...it has has shown up here on forum in several threads concerning memory foam mattresses and mattress tops...ultimately, it is a guessing game...you cant know how you will feel after surgery til you get there....you can read what others have done in the same situation, but it still doesnt mean it will be true for you...or for me...
            Well, hey, this is exactly what I was trying to do in the "bed thread" . Of course, everyone's different, but I thought patterns would emerge among post surgical pts compared to what they had liked before. I also thought for sure that doctors would have had strong opinions - no, actual specific requirements, for what they did and didn't wanted their patients to lie on (especially during the initial healing stages).

            If fusion length and presenting problems were factored in too, I suspect individual differences would turn out to be a lot more predictable than they appear at first glance.

            Asking is my way of reducing uncertainty in shopping. I hate to shop blind, but this IS the time to shop - especially being alone! After my brother's hip joint replacement, his wife could go out and make different sleeping arrangements if his weren't working. Likewise, after my mother's knee jt replacement, she had help. This is a much bigger deal. I expect I won't be able to "dash out and get milk", if I run out - much less a new mattress! So now's the time to prepare.

            Again, I still find it hard to believe doctors haven't set rules at least for the first few months! With all the serious limits I'm hearing on other threads about "no twisting, bending" etc (I hadn't known - not to that degree!), I'd think the mattress was REALLY important. If the fusion has to stay aligned without stress, how can the mattress not be a major consideration, since it's the only way to protect against damage when we're unconscious?

            Considering how definite people have been about what they can SIT on comfortably, I'm really surprised there aren't stronger opinions about what they can LIE on! Not just after surgery, but specifically comparing the first stage to later on. In fact, there does seem to be a tendency to change preferences. I just don't have enough feedback to generalize yet. I'm sure not in a position NOW, to know what will feel comfortable for me after this major body rearrangement. I want to avoid another expensive mistake if possible, especially when I can't shop easily for a replacement.

            And I still wonder about the pillows and bed itself - height and location. If I need to adjust the commode height, all the more so for the bed, no?

            That's why I wanted to conduct an informal poll now. But all this really belongs in that thread and maybe I'll copy it there.
            Not all diagnosed (still having tests and consults) but so far:
            Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
            main curve L Cobb 60, compensating T curve ~ 30
            Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

            Comment


            • #7
              hey Amanda
              i get what you are saying...and now is definitely the time to shop...i just dont know how anyone can know...maybe if you just listen to the folks who have been fused in the same area that you will need...i do remember one person saying on forum that her nice comfy soft bed was too soft after surgery when it came to log rolling....maybe it got better with time, i dont remember...
              too bad beds are so expensive...not like you want to have to buy a before surgery bed and an after surgery bed! i am actually playing with buying a memory foam pullout couch...that way, if it wasnt good after surgery, i'd still have a bed to go back to...but i dont want to get ahead of myself...since i change my mind about surgery just about daily! i just cant decide...on rainy cold days i am ready...but every time i curl up in bed with puppy or bend forward in the shower to let the water pound down on my lower back, i change my mind again

              jess

              Comment


              • #8
                Originally posted by Confusedmom View Post
                It sounds like this is a very real danger for you. Would it be possible to put your mattress on the floor? And maybe a bed pan nearby? Maybe that would get you through the first few weeks, at least. I realize getting to the floor would be no piece of cake, but if you did it fully conscious you might be able to manage, vs. risking falling when half asleep. Just a thought.

                Evelyn
                Right after surgery, I don't know how you'd get off the mattress if it were on the floor. It doesn't sound like a good idea to me.
                __________________________________________
                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
                  Back-Out,
                  I received a Spine Fusion Booklet from Dr. Lenke's office that answered so many of my questions. It gave me a fairly clear idea of what to expect after surgery and even a timeline of when one could hopefully resume various activities. It says that your bed cannot be too low to the ground, so I definitely wouldn't put a mattress on the floor.
                  Karen

                  Surgery-Jan. 5, 2011-Dr. Lenke
                  Fusion T-4-sacrum-2 cages/5 osteotomies
                  70 degree thoracolumbar corrected to 25
                  Rib Hump-GONE!
                  Age-60 at the time of surgery
                  Now 66
                  Avid Golfer & Tap Dancer
                  Retired Kdgn. Teacher

                  See photobucket link for:
                  Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
                  Before and After Picture of back 1/7/11
                  tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
                  http://s1119.photobucket.com/albums/k630/pottoff2/

                  Comment


                  • #10
                    Whoah! Let me make one thing clear. I won't be alone right after the surgery. The first few weeks I'll go to a nursing/rehab facility and after that (so she says) my S.I.L will be coming to help for an as yet undetermined period. I hope a few months! I'm worried about what happens after she leaves, Especially after my detox last summer, I know risks I'm apt to still be running.

                    One of the first fears I had when this surgery started to materialize, was that period of falling and insomnia. That was even before I learned how dangerous falls will be this time! I just couldn't stand the thought of another detox-insomnia hell. (Note: I had worked up to ~ 120mg+ hydrocodone and at least 20 mg oxycodone/day!). Because I was on opiates for so long, I will habituate much more rapidly than most of you and probably also need more for relief.

                    Getting off opiates was an especially serious problem for me, because of the degree of insomnia I suffered and the sleep meds I had to take as a result. This is a double risk because I have neurogenic bladder (I have to get up at night to pee sometimes more than once). I MUST make some realistic plans for how to cope with all this. Getting my room (and house) clear, is a necessity to minimize tripping. But there's more...

                    My coordination and consciousness will be more impaired than average while I'll have to get up more no matter what state I'm in. I'd think some of you would be dealing with some of the same issues, though - especially those unused to pain meds, who may also get disoriented.

                    This is a common problem with older people post surgery (or even just alone with meds, whose doses they may have trouble keeping track of!) Nb example given of my mother after knee jt replacement, It just happens to apply to me because of my medical history. And, of course, it also just so happens to be humongously serious because of the nature of this operation!

                    Not that falls aren't dangerous even for those who haven't been fused. Fragile elderly persons living alone, are at high risk of fractures (hip especially). Such a break is often what does them in, as they often never quite recover and suffer other complications while increasingly debilitated - embolism, etc. It's what often lands them in nursing care - GOD FORBID! That and risk of falling, living at home alone.

                    Seriously, if I have to, I'll use #&^%"*& "Depends" - worse things happen. No one ever died of embarrassment and, of course, you will keep my secret it if it comes to that, I'm sure... )

                    But I need to somehow account for this real risk in my planning NOW. It's one reason I'm also asking for suggestions about the bed and mattress (other thread).

                    BTW I see Melissa is having trouble with her too-high bed. Exactly the kind of thing I'm worried about. And getting up at night to pee, makes that problem a thousand times worse, if you're under the effect of various medications - and pain, insomnia, etc. Lack of sleep itself can have the effect of intoxication!

                    As you can tell, I tend to be anxious and unfortunately, my life has justified it. In fact, it produced it! (I didn't used to be anxious )

                    That's why I'm trying to prepare - both to BE prepared while I'm (relatively) mobile, and also because I feel less anxious if I know I've protected myself in all ways that are realistically necessary. Feeling calmer, is a safeguard in itself. Better safe than sorry, has become my motto - that and "Be prepared". *Sigh*

                    My sons and I would have perished many times over, if I hadn't thought our lives through in advance - on the basis of "what ifs". It's no joke to raise two special needs kids with ZERO help from their father. On the contrary, without detail, he tripped us up as much as possible. There are such things as psychopaths...

                    So this is just the latest (but probably not the last) time I'll need to be protect myself by anticipating problems BEFORE they happen. In order to avoid them. This time, what's good: I'm not caring for children. What's bad: I myself don't have as much protection as I really need. My situation isn't common, thank God. Not that this is Fun City for anyone, but I have to put together solutions for a number of conditions and limits, that are out of the ordinary. Yes, even just possibilities - but that's how I have to function, unfortunately. Now you know more "where I'm coming from".
                    Not all diagnosed (still having tests and consults) but so far:
                    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                    main curve L Cobb 60, compensating T curve ~ 30
                    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                    Comment


                    • #11
                      To ask again...

                      I'll ask again...Do we EVER get to where we are past the extreme risk of falling? I don't mean that we can fall with impunity, but that it becomes so much less dangerous, that we can --- exhale a little?

                      Remembering my late lamented neighbor ( a very good friend), who suffered from Charcot-Marie-Tooth. Even though his grandson lived with him after his wife died, he was at constant risk of falls day and night. No musculature because of his genetic problem, and his balance was terrible walker or not.

                      But at least. he wasn't as "breakable" as I'll be. Hopefully, this fragility will decrease as I fuse, and falling will also become much less likely after I get through the initial painful period, when my meds haven't stabilized. Also, once I get my muscle tone back, that is bound to help loads too!
                      Not all diagnosed (still having tests and consults) but so far:
                      Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                      main curve L Cobb 60, compensating T curve ~ 30
                      Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                      Comment


                      • #12
                        Amanda,
                        I have been through this surgery 2 times now, and I havent felt extremely unbalanced at any time even in the hospital getting up for the first time. You will have a walker upon discharge if you feel you need it. There is always the faint fear of falling because of my new back but I definitely do not feel like I will fall even while on pain meds.
                        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


                        • #13
                          I agree with Naptown - just get yourself a walker - that's what I did. I put it up next to my bed at night, and I woke up (still do) to use the bathroom about five times a night, and the walker would be there for me to lean on while drugged up on the drugs and feeling sleepy. That's your safest bet for the beginning part of post surgery.
                          Lynette - 44 years old.

                          Pre-surgery thoracic 55 degrees
                          Pre-surgery lumbar 85 degrees

                          Post-surgery thoracic 19 degrees
                          Post-surgery lumbar 27 degrees

                          Surgery April 1st 2010.

                          Posterior spinal fusion from T9 to sacrum.
                          Dr. Cronen at University Community Hospital - Tampa, FL.

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