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  • Miscellany questions about mobility limitations

    (in order of association not importance)


    a) turning head to drive?
    b) dressing - bras? any other problem articles of clothing? (I hear socks are a biggie and I assume one can't fasten dresses in back Tying shoes? Lord, I got SO tired of wearing rubber soled slippers everywhere after hand surgery!)
    c) reaching things on kitchen or other shelves?
    d) routine things like hanging clothes in closets
    e) scrubbing burnt pots (don't ask! )
    f) how far does one have to squat to compensate with knees (thinking of having knee joint replacement first, to salvage a little more of my independence!
    g) opening and closing sticky garage doors
    h) sitting at computer (my lifeblood)
    i) will I be allowed to climb on stools to reach higher things?
    j) (most of all) sleeping! How is one to lie after a back incision or a front AND back incision? Can I ever lie on my back again (like for MRIs or - more - social - activities?)

    Guess that's enough for now. As I live alone, I need to anticipate as much as possible. Even planning for the hand surgery ("front loading" bras etc) I found there was a GREAT deal I hadn't thought of. Each one made my life that much harder, especially as I had a surgical complication.

    I apologize for this very demanding query! Perhaps some kind souls will take a stab at it, if only in part.
    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
    Forgot to give my specs

    My projected fusion (so far, consults ongoing), looks to be from T4 to pelvis, probably with anterior fixation at lumbar area. Also lumbar kyphosis, marked rotation and a lumbar Cobb of 60 deg!

    I'm sure it's highly variable by person, age and fusion length, but I need to know/guess how much I can tough it out on my own and how much I will have to rely on other(s)

    Remember : NO one else at home is very different from even a few minutes help in the AM and PM! I should have help for a month (or two?) but then....

    Thanks and blessings on you all again!
    Last edited by Back-out; 04-28-2010, 03:54 AM.
    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


    • #3
      Hey Back Out Amanda
      i started a thread..."all the pelvic people"...there may be some answers on there...a few other threads have addressed the same questions...most of which i've asked in various ways many times
      everyone has told me that oner really bends from the hips...so, using hips and knees is about it...

      but i guess i wont be doing too much hip dancing after surgery

      i am sure some pelvic people who have had the surgery will answer you...see also Titaniumed's threads!

      jess

      Comment


      • #4
        (a) I bought myself an extra wide rearview mirror which gives me more visibility since turning my head around to back out of a parking space is no longer doable.
        (b) I still use a sock aid to get socks on. It’s just easier and quicker. Gave up on pantyhose. I like opaque hose with skirts during winter, but it’s a struggle to get them on. I bought walking shoes with Velcro straps…so much easier than trying to tie my shoes. I can do it, but the tie is off to the side. I have no other problems with other pieces of clothing.
        (c) No problem there.
        (d) It helps to use a grabber to retrieve laundry from washer and dryer especially during early recovery. Grabbers come in handy for lots of routine things.
        (e) I don’t burn my pots. Loading a dishwasher can be difficult during early recovery. I have no problem now.
        (f) I don’t squat. I get down on one knee.
        (g) Can you get yourself an electric garage door opener? I would never attempt to manually open a heavy garage door.
        (h) I can sit all day with no problem.
        (i) I keep a little step stool in my kitchen to reach things on high shelves. But I will not get on a ladder. I call a friend if I need assistance with anything that requires climbing a ladder.
        (j) I have no problem lying on my back. I was a stomach sleeper so it took some getting used to. But now I alternate between my side and back. A good comfy bed is in order.

        I live alone too and I was able to be independent at two months. Since my surgery almost two years ago, I’ve never fallen or encountered any problems that I could not handle. And if I did, friends were just a phone call away.

        Comment


        • #5
          Originally posted by Back-out View Post
          (in order of association not importance)


          a) turning head to drive?
          b) dressing - bras? any other problem articles of clothing? (I hear socks are a biggie and I assume one can't fasten dresses in back Tying shoes? Lord, I got SO tired of wearing rubber soled slippers everywhere after hand surgery!)
          c) reaching things on kitchen or other shelves?
          d) routine things like hanging clothes in closets
          e) scrubbing burnt pots (don't ask! )
          f) how far does one have to squat to compensate with knees (thinking of having knee joint replacement first, to salvage a little more of my independence!
          g) opening and closing sticky garage doors
          h) sitting at computer (my lifeblood)
          i) will I be allowed to climb on stools to reach higher things?
          j) (most of all) sleeping! How is one to lie after a back incision or a front AND back incision? Can I ever lie on my back again (like for MRIs or - more - social - activities?)

          Guess that's enough for now. As I live alone, I need to anticipate as much as possible. Even planning for the hand surgery ("front loading" bras etc) I found there was a GREAT deal I hadn't thought of. Each one made my life that much harder, especially as I had a surgical complication.

          I apologize for this very demanding query! Perhaps some kind souls will take a stab at it, if only in part.
          Hi Amanda,

          Just my experience:

          1. Driving was not a problem for me, I turn my body...not my head. Driving in a brace is a little weird.

          2. Bras...for some reason never felt comfortable in a bra after surgery but camis with a built in bra became my best friend.

          3. At first reaching was difficult for me but that got better with time.

          4. No problems

          5. No problems ;-)

          6. Squatting has been difficult for me as it is hard to get back up again ;-) but I try.

          7. I tried this once. Never again.

          8. Hard at first, better with time.

          9. I too keep a step stool in the kitchen for the high shelves. No ladders for me either.

          10. I have always slept on my back since having both my surgeries. It seems to be the only comfortable position esp. at first.

          Its been just over a month since my second surgery and I feel physically I could manage on my own (I mean just taking care of my personal needs) but this silly brace fastens in the back so I still need hubby to fasten me up after my shower. Good luck in planning...there's always something new to think of!
          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


          • #6
            God bless all of you!!! That question was a whopper.

            To Chris - great info. VERY encouraged about the sitting (read elsewhere too). Standing will always be hard for me I fear owing to the lumbar compression and hardware to come. That's RIGHT! rub it in about the burned pots!

            naptown - you too! Many thanks. Can you sit at the computer now and if so for how long? What's the problem if you can describe it?

            jess, thanks too = will look up your thread!

            Best!

            Amanda
            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
              Practical question...for "pelvic people"

              how does one put on pants or jeans after fusion to sacrum or pelvis...i think about this every day now...i wear jeans most of the time at home and often when going anywhere...i am usually in some kind of pants or other...soooo...i just tried today...to put on jeans bending from "hips"...couldnt do it...needed to bend from waist...????
              if panty hose are difficult...arent pants difficult too...?

              thanks for any answers....
              jess

              Comment


              • #8
                Yesss

                I'm a jeans and slacks person too...

                Please tell.
                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


                • #9
                  Originally posted by jrnyc View Post
                  Practical question...for "pelvic people"

                  how does one put on pants or jeans after fusion to sacrum or pelvis...
                  if panty hose are difficult...arent pants difficult too...?

                  thanks for any answers....
                  jess
                  Jess - We put our pants on one leg at a time! Sorry, I couldn't resist that one!

                  I had to think about the pants. Right after surgery I wore flannel sleep pants or comfy cotton stretch pants that had elastic waist bands. I usually stood up while getting dressed. I used my reacher to hold on to one side of the pants while I put my foot in - pulled it up so I could hold onto the waistband with my hand as I put my foot into the other leg and pulled them the rest of the way up. Just bending from the hips.

                  And now I just get dressed as I normally did. Socks and shoes I usually sit down and just put my foot on the opposite knee. I don't have trouble with laces now but for the first two months I had to have someone lace my shoes for me when I went out for walks.

                  I'm working on a reply for the other questions!
                  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


                  • #10
                    How about Bathing suits?

                    Not talking tiny little 2 piece nothings/ but bigger one pieces?

                    Is this going to be possible this summer for me?I am having surgery next Tuesday May 3rd.

                    Melissa

                    Comment


                    • #11
                      Julie, doesn't Dr. Kabeish use minimally invasive?

                      How was it at JHU?

                      And is he as hunky as he looks in photos?
                      Last edited by Back-out; 04-29-2010, 01:58 AM.
                      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
                        Thanks, Julie..thanks for the reply....had that joke coming to me

                        i guess i meant do you have the stability to stand while putting on slacks...one leg at a time...and holding yourself up while putting on the other leg...or could you put on the slacks sitting down...? it must look funny, me standing up in the morning trying to put on my jeans without bending too much...trying to get my foot into the pants leg without falling over while trying to stand(while i try to imagine 2 rods and 16 screws holding me straight)....i dont think i will be able to figure it out until i actually HAVE rods and screws in me to the pelvis...all this "imagining" and trying to do it now is just scaring me...and making me crazy with worry....

                        thanks for the description, though....i kinda figured on grabbers for socks and shoes n' stuff...the pants had me stumped

                        jess

                        Comment


                        • #13
                          That's what I was wondering, jess, but I was too embarrassed to ask. It's been a long time since I could put shoes or pants on, standing unsupported. I even need to lean on the sink to brush my teeth. It’s not balance, but the compression on my spine, that I can’t stand - all my body weight bearing down on it.

                          It was especially hard after hand surgery, but if I'm ramrod straight and unable to bend...I dunno,

                          It’s hard to imagine not hurting - so that I could stand and dress even without bending at all, It's a lovely thought - all except for the price I 'm afraid of paying for the privilege, in …..discomfort. I try to avoid the word "pain" - started that in my Lamaze class before giving birth to my first son. And it worked FWIW! I didn't need any medications.
                          But, of course, I had a baby to look forward to in the end.

                          Not sure what I’ll have here, even after the “Labor” of the first few months of recuperation (and apparently, certain weight loss! So hard to imagine a procedure so devastating to my body that even without activity, I’d lose so much weight, so rapidly.)

                          I picture this transition kind of like the Little Sea Maid in Hans Christian Andersen's tale. Remember how she "paid" the sea witch for gaining human legs, by agreeing to feel with every step that she was walking on knives?

                          It seems like a lottery ticket, and even if the odds are in my favor (not sure) I am not by nature a gambler.

                          That’s why I ask so many questions - trying to understand the way the game is played and making the best bet I can, the most informed decision (and hardest of all, trying to accept that in the end, the outcome is not in my hands) . Yet, as with the stock market, not investing, is also a decision involving loss, and that’s hard to accept too.

                          At this cross-roads, we are all brothers and sisters - holding hands before we take the leap of faith. At the moment we jump, we call out to each other - God-speed and (I love the French expression) “bon courage”! It means both good luck and good courage!
                          Last edited by Back-out; 04-29-2010, 01:56 AM.
                          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


                          • #14
                            Hey Amanda
                            i hate the word "discomfort"...when doctors use it, it always means "pain," and they just dont want to say it! glad if it helped you through labor, though

                            jess

                            Comment


                            • #15
                              I agree, it has to be consensual. Euphemisms bug me too, especially when I feel they're being used to spare someone else's sensitivities rather than mine.

                              OTOH I don't think it's a great idea to say "pain" in a situation which is variable. It can set people up to feel it and tension makes pain worse. Unlike labor, though, which is exciting, I think I would resent anyone's trying to palm this operation and recuperation off as anything but painful!

                              But I'M allowed to say it! Believing? Well, I'd like to know more about what this "discomfort" feels like! Wish someone were really good at describing it (Ouch Ouch Ouch Ouch)

                              All I know, is that generally bone - pain - is serious. To think of someone cutting and screwing in all that bone (I just mean the vertebrae), and so near the spinal cord itself - it's very hard to imagine it! Adding the pelvic fixation? - I just don't know.

                              I had a part of a rib used as a graft for relatively minor surgery, and even that wasn't very comfy for weeks. More?

                              Then again, there are so many kinds of pain. A good friend had serious cancer surgery on his abdomen half a year ago, and he will only say he "wasn't a very happy camper for over a month" . I know he was in and out of the ICU under heavy sedation for a LONG time. Kids with serious burns have the dressings changed daily for months. Folks in terrible car crashes have multiple surgeries, hovering between life and death in semi comatose states. You do what you have to do. I guess.
                              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

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