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  • Frustrated.....

    Hi everyone I am 8 weeks post today. Getting very frustrated because of mainly two reasons and was wondering if any one has experienced either. #1 I am STILL doing the robot walk which is driving me crazy. I can't walk as much as I would like to because of it and I am tired of people staring at me. I go back to work in 4 weeks and don't want to walk worse than my patients do. Can anybody shed some light on when I may actually look normal???? Hopefully, the answer is not never. #2 I was always a stomach sleeper. The last 3 nights I have not been able to fall asleep till the point where I have given myself severe anxiety. I want to lay on my belly soooo bad and cannot no matter how hard I try. (Using pillow ect.) I think that this did not bother me at first because of meds. which I am taking nearly none except for my sleeping pill which is not helping. Just hoping for some feedback. I am feeling agitated and am starting to wish I didn't have this giant rod stuck in my back .
    Thanks for letting me let loose!
    Janet
    36 year young cardiac RN
    old curve C 29, T 70, L 50
    new curve C 7, T 23, L 20
    Surgery June 11, UCH, Dr. Cronen T2-L5, posterior
    Revision December 20 L5-S1 with pelvic fixation
    and Osteotomy to L3 at Tampa General Hospital

  • #2
    Hi Janet-

    I am still doing the "robot" walk too. We had surgery the same week so we are both 8 weeks post op. I think it is getting better each week but I am still getting very frustrated like you. I have a post-op neck issue which is slowly getting better but that makes me very frustrated too. I just went clothes shopping and I am soooo happy my humps are barely noticeable and now I can wear shirts 2 sizes smaller!, but there are still days I wish I never had these rods in my back. Do you ever get a burning sensation after doing alot of activity in one day? I have been on my feet all day, it's 4pm, now I have to lay down for like 2 hours so it goes away. I am still taking 2 pain pills a day so that I can keep up with my 3 year old and 5 year old. How are you doing with your driving? I took my first drive last night, but didn't go far because of what's going on with my neck.

    Keep in touch! Hopefully, the "robot" walk will get better each week!! I hope some other post-op people respond to your post and tell us it will get better with time.

    Jen
    Surgery date: June 8, 2010 with Dr. Boachie
    Thoracic curve: 55 degrees, corrected to 25 degrees
    Lumbar curve: 58 degrees, corrected to 27 degrees
    Posterior-only surgery, Levels T3-L3
    31 year old mother of 2 young kids

    Comment


    • #3
      Since I started PT, it seems like every time I do something my shoulders tense up.(From the exercise) Then I have to rest a little while and start all over again. I don't really notice any difference in my curves. I think my body is still holding me in the same position (Left hip higher, R shoulder higher). I don't know about the rib hump. I am wearing the same size. People say I look thinner. I think this was from lack of exercise. Since I started PT I eat more and weigh more. I don't have a problem driving I am pretty comfy in the car. I am taking about 1 pain pill a day, 2 when I am very busy, like camping.
      Janet
      36 year young cardiac RN
      old curve C 29, T 70, L 50
      new curve C 7, T 23, L 20
      Surgery June 11, UCH, Dr. Cronen T2-L5, posterior
      Revision December 20 L5-S1 with pelvic fixation
      and Osteotomy to L3 at Tampa General Hospital

      Comment


      • #4
        Wow, Janet. Sounds like we are having the opposite problem. I lost 40 pounds before the surgery. Then after the surgery I lost 20 pounds! I think all the weight loss is from lack of appetite from the surgery. I haven't been this thin since high school! I am now wearing a size small (instead of a large shirt) since my rib hump was greatly reduced. Because I gained over 2 1/2 inches in height and lost so much weight, I think people think I had a gastric bypass operation or something! Everyone that sees me asks me what happened! I am scared to wean down to 1 pain pill a day, or I don't think I'd be able to keep up with my kids.
        Surgery date: June 8, 2010 with Dr. Boachie
        Thoracic curve: 55 degrees, corrected to 25 degrees
        Lumbar curve: 58 degrees, corrected to 27 degrees
        Posterior-only surgery, Levels T3-L3
        31 year old mother of 2 young kids

        Comment


        • #5
          At 8 weeks and one pain pill per day, and chasing kids, I reckon you girls are doing great!

          Wish I could help with the robot walk problem, but am not sure what you mean exactly. My walk is still slightly wonky at 17 months (I tip slightly to the left and feel one leg is slightly shorter than the other because when I raise the heel on that foot/leg, my walk is much smoother, plus it makes my shoulders even when I lift that heel. But dr. doesn't want me to use a heel lift.) But I don't think that's what you're talking about. Do you mean like a tin man walk? A leaning forward or backwards walk?

          Just know, whatever it is, it's still very early days and there will be massive improvement yet to come. I know it's frustrating and you have had enough of it and want it 100% NOW, but whatever your outcome, it will be a lot better than it is now. I promise!
          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


          • #6
            I had to smile at this post, because just yesterday JenM and I were talking about doing the "robot walk." We must all be normal (robots!)

            Comment


            • #7
              I don't know girls, we are not getting much reassurance this will go away?
              36 year young cardiac RN
              old curve C 29, T 70, L 50
              new curve C 7, T 23, L 20
              Surgery June 11, UCH, Dr. Cronen T2-L5, posterior
              Revision December 20 L5-S1 with pelvic fixation
              and Osteotomy to L3 at Tampa General Hospital

              Comment


              • #8
                Hi ladies, be positive. I know I'm young and my fusion wasn't as big but I'm nearly 12 weeks and things are getting better quicker now.. I could only
                Sleep on my back for first 8 weeks.. Now I turn
                On my tummy for the last 2 hours and the stretch feels great. I walked 8 kms yesterday and had a lie down for an hour then felt really good. I take about 2 panadols a day but prefer to lay down when I
                Get tight than take pain killers. I am a little bit stiff in my shoulders and the muscles are still numb which makes me slouch a bit and I have to be careful because I need to make sure my bottom Curve gets better so I can avoid having that fused too.. But it's still early days so
                I try not to worry but you still have good
                Days and bad. Good luck ladies..
                Kellie 25yrs
                Melbourne, Aus
                Diagnosed 1998- brace for 3 years
                2006 curves showed progression
                Before surgery T45* L43*
                25/5/10 posterior fusion T4-T11
                Post surgery T<20* L27*
                Fingers crossed for more improvement on lumbar before 12 months!

                Comment


                • #9
                  Hi all, some reassurance -- it will gett better and better with time, I am fused way down and did also have that robot walk, at a little over a year post op, definatey do not walk like a robot anymore. Just take it slow, keep walking as much as you can, the robo walk will ease up!
                  Dolores A
                  June 4, 2009 Anterior L3 - S1
                  June 8, 2009 Posterior T4 - Pelvis
                  Mark Agulnick, MD FAAOS
                  NY Spine & Scoliosis Center

                  Comment


                  • #10
                    Trying to prepare - beyond anecdotal data (&quot;ROBO-WALK&quot;? Whazzat?)

                    This is the first I'm hearing about this so-called "robo-walk".

                    I'm sure I can speak for other "PRE's" and especially Non-Committeds, in orienting to such new negative expectations.

                    It's not that we're wallowing in bad news, but rather that we want to know what is apt to befall us BEFORE rather than having this or anything else come as a big surprise. That way we can include everything into our "cost-benefit" analysis - both to make the most informed decision and also to brace ourselves for what will/MIGHT happen. This is most important for outcomes which are almost universal even if they're temporary. It's easiest to weather any storm if we know it will blow over and about how long it's apt to last.

                    In view of Linda's thread about what older patients can expect (MANY complications), clearly, we in that demographic will have quite a lot to contend with. Some of you may disagree, but personally, I do better when I can prepare emotionally - and, of course, physically (if that's a possibility).

                    For instance, walking poles and good supportive shoes may help with this issue. Also - most importantly perhaps - just KNOWING something is a common part of recovery, can allay fears that one is experiencing something out of the ordinary. Best of all, is when one can ready oneself, knowing a difficulty is both common and TEMPORARY ! Also, if we have such things formalized to an extent, each new crop of "Surgies" won't have to "re-invent the wheel' .

                    That said, I repeat - this IS the first I'm hearing of it. To those long out of surgery, could you please comment on whether or not this "robo-walk" (WHATEVER IT IS!) was something you went through and if so, how long it lasted? If you could also notate yr fusion length and age at surgery, I'd much appreciate it - and I'd bet others would too. (I.e. is this more common w/ those fused to S1 w/w-o pelvic fixation?) .

                    It's always most useful it we end up with something semi-organized for reference - beyond anecdotal data.
                    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
                      I never considered my walk as a "robo walk", although that's kind of a cute saying. Mine was just an old lady walk... shortened gait, slow walkin' type of thing. It just takes awhile to get back into a normal walk for some of us, but with a lot of others, it sounds like it was a matter of weeks rather than months. Remember, we are all different, so there isn't a "one size fits all" verdict for how recovery will be for any of you. The extent-- (as in extra procedures, how many surgeries, etc.) (and length, both in duration and #vertebrae fused) of your surgeries are different, your age, your health (including the health of your spine--ddd, arthritis, other problems, etc.) all come into play. There are so many facets that we can't possibly figure in, so when it comes your turn, you can be prepared for the worst and hope for the best. Some of us are turtles/tortoises in our recoveries-- very slow, but steady. Others are like the hare-- outta here, and fast. The end result is the same-- we finish the race and we are all winners, barring any major complications.

                      As far as Linda's study goes-- that would include, I'm sure, things like an ileus, which is short-lived. When you look at the big picture and see what all can go wrong-- and there are a ton of little things like that, it would be so nice to be able to sort them out and then look at just the biggies. Unfortunately, I don't think they let us know the percentage of biggies... but maybe Linda can address that if she finds out. When you are older and already have pain and look at the possibility of at least stabilizing your curve and maybe reducing or getting rid of the pain, it looks like a win-win shot worth trying. Even if you don't get rid of the pain, you won't be having your curve increasing anymore. That's why a lot of older people, I think, choose surgery.

                      Surgery is not a panacea where your back will be straight, no more rib hump, and no more pain. But with surgery your back will be straightER, your curve will be stabilized, and there is the possibility of less or no pain. But that is not a promise. And there is always the possibility of complications. And with long fusions there come some limitations. But they are do-able. You just have to adjust to doing some things in a different way.

                      BTW-- I liked New Balance 801 shoes -- they're a slip on tennis shoe type-- no laces. They are like those Easy Spirit ones. I've been wearing them for about 3 years, although I can't find them as much anymore... maybe the number has changed.

                      I hope I haven't confused anyone...
                      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


                      • #12
                        Amanda,
                        I'm with you on at least knowing more of what to expect prior to surgery. This forum is certainly good for that. I was thinking that I would likely walk cautiously after surgery, but didn't think I'd have to put a lot of effort into walking normally. I guess that's where a physical therapist can help.
                        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


                        • #13
                          I agree, that pre-op you need to know the good, the bad and the ugly. As I've said before, knowledge is power. But you also need perspective. On this forum, we read about lots of scary issues related to the surgery and they seem to stand out from the smooth recoveries. They are very worrying for a pre-op, naturally.

                          What we all need is a list of possible complications with a occurence percentage for each age group. Is there anything like that around?

                          When I first saw my surgeon, he gave me a list of possible risks and complications with a percentage point showing the likelihood of this happening, but it wasn't broken up into age groups. I don't have it any more. If my memory serves me correctly, infection was the highest risk but it was still small.
                          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


                          • #14
                            Let me give you a example.....I feel great and feel like I am walking much faster and able to keep up with family and friends. However, both this weekend and last weekend my family went tubing at the State Park and both times I got asked if I "needed assistance" while walking from one place to another. Obviously, I feel well enough to go on these outings, I just wish I looked well enough to go on them. Being 36 years old it is quite odd to have the elderly staring at you at the gym or supermarket, just saying. I wish I could describe the walk. Maybe kind of stiff with the top portion slightly bending over and swaying side to side? Anyway, I do hope it goes away with time. The sooner the better. I don't like being looked at or treated as different.
                            Janet
                            36 year young cardiac RN
                            old curve C 29, T 70, L 50
                            new curve C 7, T 23, L 20
                            Surgery June 11, UCH, Dr. Cronen T2-L5, posterior
                            Revision December 20 L5-S1 with pelvic fixation
                            and Osteotomy to L3 at Tampa General Hospital

                            Comment


                            • #15
                              Hi Janet,

                              I am 9 weeks away from surgery, so I don't have any advice to offer about your gait. But I've been wanting to tell you that I am incredibly impressed and encouraged by your recovery so far. I work in the cath lab, and I am hoping to go back to work (8 hr shifts, light duty, very accomodating employer, no wearing lead apron) around 12 weeks, like you. I am truly amazed by your recovery. Going camping and tubing at 7-8 weeks...that is truly impressive!

                              What did your doc say about your gait? I wonder if you could start some PT at this point or if it's too soon?

                              Take care, and I hope your gait will improve with time.
                              Gayle, age 50
                              Oct 2010 fusion T8-sacrum w/ pelvic fixation
                              Feb 2012 lumbar revision for broken rods @ L2-3-4
                              Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                              mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                              2010 VBS Dr Luhmann Shriners St Louis
                              2017 curves stable/skeletely mature

                              also mom of Torrey, 12 y/o son, 16* T, stable

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