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Thread: Adapting to limited mobility

  1. #46
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    Mar 2012
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    Hi Again Everyone,
    Ed, I completely agree about the safety issue with the headrest and was thinking lots about it today....and had a brainwave! I have tried turning the headrest around etc but today decided to try using the headrests from my husband's car (we both drive Hondas, his is a CR-V and mine is a Pilot) - and it WORKED!! His headrests are much thinner and smaller and aren't as "puffy" or rounded as mine and they fit perfectly in the Pilot's headrest slots. So my advice to others with the same problem is to maybe try a less expensive version of the same car company and see if their headrest doesn't push your head forward! VOILA!
    Also, about not being able to reach the car door to close it - I initially had a knotted tie around the armrest to pull the door in but now find I don't need it.
    Thanks for the thread, Ed - now that the headrest situation is better, maybe my adaptive level is more like a solid 8??
    Suzanne

  2. #47
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    Jan 2012
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    Yacolt, WA
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    Quote Originally Posted by leahdragonfly View Post
    Hi Susan,

    you mentioned up thread that you have tested out a little bending and a little twisting...my strong advice to you is DON'T right now!!!!!

    I understand how impatient you feel...I was very impatient with myself in recovery too, but it is simply not worth it to push your mobility limits now and find out later you compromised a solid fusion. I have posted before that I was hazy in my understanding of some of my restrictions, as I did not get clear instructions about my limitations that I recall (probably due to the post-op drugs). As you know I ended up with broken rods at L3 and L4 at 15 months post-op, and I will always wonder in the back of my mind if I did something to prevent a solid fusion. I will of course never know, but let me tell you, it REALLY sucked having to go through a major, 8 hour A/P revision. I am now about 16 months post the revision, doing very well, although I still feel sometimes like I'm waiting for the other shoe to drop. I think in time if all continues well I will be able to move beyond that.

    And finally, to answer your question, I was able to wipe the normal way without any tools or help from day 1. I have flexible shoulders which helps. We are all so different!!

    Take care, and please don't over do it.
    Thanks Gayle....you are right. I will be less adventurous in testing my limits. As much as I have a love/hate relationship with my brace, it does constantly remind me to be careful. It must be over 100 degrees inside my brace right now, really sweaty. Susan
    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

  3. #48
    Join Date
    Feb 2012
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    77
    Quote Originally Posted by twistedRN View Post
    Hi Everyone,
    It has been a long time since I visited the forum but it is great to see how much support you all continue to give to fellow scolis out there!

    As far as the answers to your questions, I was fused T2 to the sacrum with pelvic fixation and am now almost 15 months postop. I would rate my adaptation to my decreased mobility at about a 7-8 right now. I never did wear a brace, either preop or postop, although I often feel like I am wearing one now! I have adapted to getting things off the floor by doing deep knee lunges keeping my back straight. I am now able to tie my shoes either by putting my foot on something high (like a bed) or putting one foot on the opposite knee, although that is still very tight for me. I can shave my legs normally except I am unable to reach the outside of my left lower leg for some reason. I haven't used any of the assistive devices since about month 6 or so, although I do still use my grabbers because it is so much easier than doing those deep lunges! I have been doing PT for a few months now (3x a week) for decreased shoulder ROM related to my shoulder blades not moving well on my torso / fused thoracic spine. It is definitely helping with the ROM in both shoulder joints and also the tightness I feel across my mid back.

    One of my biggest issues is driving for two reasons : 1. my head is pushed forward/down when it hits the headrest if I try to sit in the seat with no pillow behind me....anyone else have this happen?? It is quite frustrating! 2. When I try to merge into a lane, coming from the right, it is very difficult to turn enough to see the cars coming at me from the left (especially since I am trying to preserve what few neck vertebrae that I have that are still unfused!). I usually try to not pull up as far into the intersection so that I can see the cars on the left easier before I reach it.
    Anyhow, hope that answered your question! I hope to be a good solid 9 on your scale this time next year!

    Hi, I just wanted to tell you that I too had similar difficulties when I started driving. My head was pushed forward and I felt like I was going to hit the ceiling (murano) I didn't however have the problem in my daughter's car (highlander). I am 13 months post op T9-S1 with pelvic fixation and things are much better now. My head is not protruding forward anymore and it is easier to turn - that was a challenge. I can only assume too that yours might be a little bit more difficult because you are fused from t2 down. I went to P/T for nine months and it helped me tremendously. Be safe and look forward to hearing when you are a 9.

  4. #49
    Join Date
    Aug 2009
    Location
    York, PA
    Posts
    332
    Just wanted to say hi to everyone. It's been quite a while since I've been on the forum and I see lots of posts from familiar names. I am a few months past 3 yrs. post-op, fused T-4 to sacrum and had a brace for about 3 months because some of my hardware wasn't completed due to surgical complications. For me, I would have to put myself in the 9-10 category. Like Debbie, there's nothing I can't do that I want to do. Yes, I tie my shoes by putting my leg up on my knee and can trim my toenails if needed but pedicures are so much more fun. I am in my second year of working with a trainer at the gym who has me doing just about anything that doesn't involve twisting or lying on my stomach to lift any weight. The worst thing is trying to get my feet out of the rowing machine because I can't really lean forward to open the straps. I still have a little trouble getting out of a car that's really low. Despite my efforts at the gym, I think there are some muscles that are just never going to be what they once were. Other than that, no issues. I only do "old fogie" amusement park rides anymore like the ferris wheel but who cares? My mobility would have been far more limited at this stage in the game had I not done the surgery.
    Anne (in my 3rd day of retirement after 34 years in public school music education!!)


    Anne in PA
    Age 58
    Diagnosed at age 14, untreated, no problem until age 50
    T4 to sacrum fusion
    63 thoracic now 35, 92 lumbar now 53
    Dr. Baron Lonner, 2/2/10
    Am pain-free, balanced, happy & an inch taller !

  5. #50
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Congratulations on your well earned retirement Anne! It's great to hear you're doing so well at three years post op.
    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

  6. #51
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,712
    Anne,
    You sound so good. Congratulations on your retirement. I retired 8 years ago after 34 years of teaching second grade and kindergarten. I still substitute but a little less each year as I keep finding other things to do. I'm with you on the pedicures and enjoy every minute.
    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/

  7. #52
    Join Date
    May 2009
    Posts
    3,729
    congratulations on retirement, Anne
    i left after 25 years with NYC DOE...but i left due to pain...

    after 34 years, it might take you awhile to sleep later...
    but i know you will enjoy retirement....

    jess...and Sparky

  8. #53
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Anne--
    Congratulations on your retirement! I retired in 08 after 35 years of teaching English--mostly in middle school. I so love retirement and truly hope it's great for you too. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  9. #54
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    Jan 2012
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    Yacolt, WA
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    Quote Originally Posted by golfnut View Post
    Susan,
    I know it's hard to be patient, but when you look at the big picture of a fused, straight spine for the rest of your life, it's so worth it. I would advise not bending or twisting at all for many more months. This is a crucial time for your vertebrae to fuse, so be very careful. I used the extender for wiping for probably 6 months or more and the razor with the long handle for a year. Look at the video in my signature if you want to see my mobility at 15 months. I couldn't imagine being able to do that during my first year. Now at over two years post-op, I know my swing shows more speed and a bigger turn. I don't have any pain during or after golf. You will be amazed at the improvements even after two years.
    Thanks. Part of my testing and trying to move in various direction, is that preop I had no idea really what postop looked like. I kind of thought that I would be stiff like I had a broomstick inserted into my back. I honestly thought that a titanium rod was like a stiff broomstick. So, I am so pleasantly surprised! It would have helped if I had met some woman preop with my same fusion. To relieve your concern, I barely move my back at all, just a little bit in all directions.....most of my moving is the minimal movements that I make during my brief times out of the brace. Honest.....I just want this surgery once.
    Susan
    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

  10. #55
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    Jan 2012
    Location
    Yacolt, WA
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    Having read this thread with a lot of interest, like Irina, I was reassured that mobility will get better.

    I see 2 questions really: 1). What is your level of mobility compared to preop?
    2). What percentage of things that you really want to do bother you that you cannot do or need to do in a similar or different way?

    While some people give a less than 10, they go on to say, that it really doesn't bother them that they cannot do something or another. If you gave yourself a 9 because you couldn't put on socks, but then said that that the inability to put on socks bothered you SO much, then it is important. If on the other hand, you say, that using the sock aid was, hey, no big deal and your just put it into your routine without even thinking and hey....who cares anyway about the sock assist? To me, that is the more important question.

    Susan
    Last edited by susancook; 06-12-2013 at 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

  11. #56
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,361
    Susan

    I think that “most” of us that are 1 yr post op or more have stopped using a sock installer.....I was around 8 months when I stopped.

    I used to be able to bend over and “palm” the floor.....I cant do that anymore after surgery and that’s fine. I have adapted.

    I should have titled this thread “Adapting to limited mobility, for decision making” I guess I could go and change it....Its for those pondering a surgical decision. Life after fusion is not the end of the world....but preparing for complications, and expecting the best is the mindset I adopted.

    Now, the people that have pain and are hurting after a long recovery because something is WRONG, should post in Linda’s thread “I’m sorry I had surgery”. This is another subject matter.....

    I hope that these threads help others in the decision making process.....

    One thing I have had problems with is the motorcycle thing......I used to ride supermoto years ago and realize that its nuts and have quit and sort of adapted.....I don’t know if I will ever get over this....Here is a sample. I sold my “hot” bikes during my recovery.

    200MPH in the rain. Isle of Man TT.
    http://www.youtube.com/watch?v=LU-ynRoqDEs

    Another example of adapting....mental and physical adaptation.

    “Conditions very iffy, but they are going anyway”

    Sound familiar?

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  12. #57
    Join Date
    Jul 2012
    Location
    Warsaw, MO
    Posts
    373
    Ed, I wish this thread had been there prior to my surgery for I may have skipped the short fusion and bit the bullet correcting both curves but I was so wrapped up in the idea of losing too much mobility. I was worried that I would not be able to adapt, but now I realize I was and am strong enough.

    Now on the topic of motorcycles, you can always go to riding a trike. I used to call them an old man bike, but have changed my mind since surgery (wink wink). It is now a safer option for bike lovers.

    Tamena
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

  13. #58
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    I am the culprit with the sock aid. I think there is something about my right hip- it just won't bend enough- and the fact that I have a short torso and long legs. It's just a l-o-n-g reach. Sorry! Kudos to the rest of you. (smile)
    67 and plugging along...
    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°
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show 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

  14. #59
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    970
    Quote Originally Posted by susancook View Post
    Thanks. Part of my testing and trying to move in various direction, is that preop I had no idea really what postop looked like. I kind of thought that I would be stiff like I had a broomstick inserted into my back. I honestly thought that a titanium rod was like a stiff broomstick. So, I am so pleasantly surprised! It would have helped if I had met some woman preop with my same fusion. To relieve your concern, I barely move my back at all, just a little bit in all directions.....most of my moving is the minimal movements that I make during my brief times out of the brace. Honest.....I just want this surgery once.
    Susan
    So you don't feel like you have a broomstick up there? I totally do!!! In fact, it's not just a broomstick, but a broomstick with metal ribs coming out of it!!! I'm not complaining. I expected it to be this way, and for me it is. Feels like a metal corset inside me. But it's oddly comforting in a way because I feel so stable.

    As to your question of what we can't do that really bothers us. I don't like that I can't just squirm around in bed and pull the covers up. I either have to have my hubby pull them up, or I have to get out of bed and pull them up. There are other reasons I don't like feeling like a turtle on my back in bed, as well. Part of this may be because we have a tempurpedic and I sink in. I don't know.
    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.

  15. #60
    Join Date
    Jan 2012
    Location
    Yacolt, WA
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    Quote Originally Posted by Confusedmom View Post
    So you don't feel like you have a broomstick up there? I totally do!!! In fact, it's not just a broomstick, but a broomstick with metal ribs coming out of it!!! I'm not complaining. I expected it to be this way, and for me it is. Feels like a metal corset inside me. But it's oddly comforting in a way because I feel so stable.

    As to your question of what we can't do that really bothers us. I don't like that I can't just squirm around in bed and pull the covers up. I either have to have my hubby pull them up, or I have to get out of bed and pull them up. There are other reasons I don't like feeling like a turtle on my back in bed, as well. Part of this may be because we have a tempurpedic and I sink in. I don't know.
    I may feel differently about the "broomstick" feeling once I stop wearing the brace. It is interesting that as much as I complain [b....] about my brace, it is comforting to me as I know that I will not harm the hardware with inadvertent twisting/bending when I wear it. I also feel a lot of back tightness....maybe the turtle phenomena that you describe.

    As to your comments about bed issues, I agree with you. We have a king bed, but when I try to turn over, pillow between my legs and log rolling, it is like there is a moderate earthquake in bed. It takes me about 10 moves to finally settle in [and unwrap all of the sheets/blankets, etc] and of course it wakes up my husband. Then, I frequently have to ask him to pull up my covers. We do not heat our home very much, so I have multiple layers of blankets and a quilt, all to get tangled.

    Susan
    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

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