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Thread: Adapting to limited mobility

  1. #1
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    Adapting to limited mobility

    Ok, One for recovered patients....... I don’t start too many threads anymore but this idea came up while I was responding to an e-mail.

    For full fusion patients that were operated on more than 1 year ago. How do you feel you “adapted to your limited mobility” on a 1-10 scale? 1 would mean that you didn’t adapt well and are totally struggling with it, 10 would mean that you are as pleased as you can be with your mobility given the circumstances. Patients that are healed have stopped bumping their heads in the car by now so you can understand why this pertains to patients that are basically done with their recoveries. (1 year or more)

    Please state if you wore a brace at any point because I believe that this does help “expectations” of limited mobility after a full fusion.

    Don’t worry about how many levels, just state what levels are fused if you answer. This is more about mobility, not about pain levels.

    People ask me what its like having a full fusion all the time and I just feel that this thread would be a good resource for those considering this route.

    Thx
    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

  2. #2
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    Hi Ed,

    10. I think I've fared far better than I expected. It's been a couple of years since I last bumped my head getting into a car! (I'm so glad I'm not the only person to do that!) There's nothing really that I can't do, only things I'm advised not to do i.e. running, lifting over 10 kilos.

    I'm fused T4 - S1 with pelvic fixation.

    I didn't wear a brace at any point.

    I have no pain.

    I have fingers, toes and eyes crosssed that I can still say this in 10 or 20 years.
    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
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    I could almost say "ditto" for Jennifer's post.

    My surgery was Jan. 5, 2011. I would give myself a 9 or 10 at this point, but it would have been about a 7 at a year. I am fused T4-sacrum with pelvic fixation. I never wore a brace before or after my surgery. During my first year post-op, I could not even imagine being able to play golf halfway decent ever again. In my signature, I have a video of my swing (pretty slow) during my first round of golf at 15 months post-op. Just yesterday, my golfing buddy told me she couldn't believe how much better my swing looks this year than last summer because of more flexibility and club head speed. I have no complaints with my mobility. Zumba moves aren't so hot, but I feel like I do well with my tap dancing.
    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/

  4. #4
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    Only 14 months post-op here, T4-sacrum. Hmm. 7? It's getting better all the time. Just in the past few months I have been able to put shoes and socks on without assistive devices, shave with a regular razor, and clean house (read: pick stuff up off the floor) without a grabber. Part of it is that my legs are stronger now, so I can squat easily. And part of it is that my restrictions have been lifted, so I'm not as worried about "bending" a little bit at this point. I don't really bend, of course, but sort of lean over things--like when making the bed. Doing the laundry and driving don't bother me anymore. I can carry laundry baskets and push a full grocery cart again. I have even been able to get underneath a desk attached to the wall and clean up pet messes on the carpet! Where I still need help: loading the bottom rack of the dishwasher. I still sit on a cane chair to do this if I have a full load. Also my biggest complaint that you've all heard 1,000 times: I still can't walk fast enough. I walk fine as far as my gait and appearance; it's just difficult for me to go fast enough to break a sweat. I feel like my stride is just difficult to extend, and if I try too hard, it hurts. I am hopeful that in another year or 18 months I will be able to give this thread a "10."

    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.

  5. #5
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    P.S. I didn't wear a brace with the surgery, though I wore one in adolescence. Also, I had very clear expectations of what this would be like. And, aside from the slower walking, it has been what I expected.
    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.

  6. #6
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    Thanks for the replies....but we need more on this study! (smiley face)

    Ed-10
    Jen-10
    Karen-9-10 10 on a good golf day.
    Evelyn 7 14 months post....still need time.

    I know people that have not adapted well.....I hope they post at some point. I suppose I could dig for their posts from years ago....

    We want this to be realistic for decision making.

    Keep em coming....

    Thx
    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

  7. #7
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    Nov 2012
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    88
    Thank you for this thread. It brought tears to my eyes, just for the hopefulness it affords. I had ZERO clue what I was getting into when I got surgery last fall. I didn't go into it as an option. I got the surgery because my scoliosis collapsed so much that my back literally broke. I never even asked Dr Hey would he would be doing. When you're broken in half, you seriously don't care what they do. In the hospital, all the staff entering the room saw my x-ray on the window and said "Wow, you really had a major surgery!" I'd never had any surgery before so had no idea what they meant. The physical therapist who came to work with me for the first three weeks said he'd never worked with someone with such a big fusion. I had no idea what to expect and never had a choice. I was just thrilled that I never had to fear collapsing pain or breaking again.

    Now at 8 months, it's all sinking in. I am fused from T1 to S1 with pelvic fixation. A couple friends have wondered what's taking me so long to get better. For months I was frustrated and wondered the same thing. But I'm finally realizing what "major surgery" was. This isn't a fast recovery but it is a really good long term situation.

    At 8 months, now that I am more mobile, I have more pain. I've been very protective of my neck, especially while driving, knowing that turning my neck now puts a lot more strain on it than when I had more vertebrae to work with. But overall, I am greatly encouraged. It has been critical to keep my legs, especially thighs, really strong. I've also had to work more at keeping my shoulders flexible because I no longer get involved in activity that uses a lot of arm and shoulder movement, such as gardening. So I have to do exercises to keep fit that which normal living used to keep fit.

    Thank you very very much to those who are posting here. I've looked all over the internet and it's hard to find testimony of those who have really big fusions.
    1973 Age 15 diagnosed with scoliosis but told too old for surgery.
    2001 age 43 told too old for surgery, did physical therapy & traction.
    2001 to 2008 Intermittent use of home traction machine and TENS unit.
    2009 traction no longer effective - physical therapy.
    2011 More physical therapy. 2012 Collapsing scoliosis - MRI before surgery
    At age 53, surgery on October 2nd, 2012 with Dr Hey
    Fusion with titanium rods and bolts from T1 to pelvis.
    Post op x-ray

  8. #8
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    Ed-- this is a toughie, because we can't ever return to the times when we rolled around on the floor playing with our kids. Even then I remember some tough back times. But those "floor rolling" times ended for me long before surgery. That ended and resulted in the surgery... JuliaAnn made me take time out in a very hectic schedule right now, as I'm feeling selfish with my time. I think most of us LOST some capabilities because of the scoliosis at some time or other. Maybe not the flexibility, but some of the other things others take for granted. I couldn't carry a 9x13 dessert in a glass pan to school any more, for Pete's sake. It weighed too much. (Of course, it still kind of does...--I take cookies on a plastic plate instead.) But by the end of the day the gravity pulling on my spine had given me that crushed and ground painful sensation. I called it ache-iness, but looking back, it was outright pain. I have a high pain tolerance.

    I am now 6 years (whoopee!) post-op, wore a brace for 5 months, fused T2-L4, and can do a lot of things that I want to do. I can pick up my grandsons for a tiny bit (they are 4 years old), but they can sit on my lap. (big smile) as long as they want to! I work full time (school year) as a school librarian and can manage all the shenanigans that come with K-5th graders all day long as I teach them, including lunch and recess duties, I can have all my grown children come visit for a week at a time and prepare meals and survive (whew!), and I mostly relax in the evenings because I get worn out by the end of the day.

    My husband does not like me to do anything that might compromise my lower vertebrae, but I always tell him he has NO IDEA what I have to do at school. However, since he wants to do some of the housework, that is fine with me. (big smile), so he changes the sheets and does the vacuuming and mopping so I don't have to twist (I am not supposed to). I enjoy life to the fullest and love everything about it. I have bitten off too much at the moment and am directing our Vacation Bible School that starts in 2 weeks, a large undertaking-- so soon after my other school finished, and my daughter and son-in-law from Texas are arriving tomorrow. I would like someone to examine my head the next time I go to the doctor because I think there is something missing that used to be there. Oh, right-- of all the things I've lost, I miss my brain the most. Ha ha. HOLP! (Any Trixie Belden fans out there? That's what her little brother used to say...

    For being 62, 15 vertebrae fused, listhesis, lamenectomies, etc., I feel blessed and full of life and vigor even if I am not the outside playing ball type. Oh, right, the kids at school think I am pretty good at some stuff. They know I am fused, but they forget. I am alert, energetic (till I get home) and I praise God that I don't have to worry about my back collapsing. JuliaAnn, it took 3 years and counting for me to keep getting better and better and I'm still getting better each year. It's a process. Some jump back immediately, some of us take our time. But hey, we are all doing what we do. We end up getting stabilized and hopefully that is that. Rank me fairly high, Ed. Maybe an 8??? (CHANGING-- I was thinking you meant can do-- I've adapted to a 10.) I don't know. I'm happy as a clam, unless you're quoting from The Walrus and the Carpenter-- oh, except those were oysters. I think I am a bit slap happy. You take care. Tee hee.

    PS-- JuliaAnn-- I remember people from my church asking me "what went wrong?" when it was taking me a long time to recover. You just have to grin and bear it and explain it's the kind of surgery that takes a long time to recover from. You had total reconstruction of your spine. It's the same (about) as being hit by a Mack truck. You have to start from ground zero...
    Last edited by Susie*Bee; 06-01-2013 at 06:09 PM.
    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

  9. #9
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    Hi to all,
    I can't assign a number to this yet. It has been a few years since my last surgery ,but my spine was built at different times. Ist was t10-pelvis, 6 days after surgery I fractured through t9, Then I had c5,6,7 fused and the t1-t10. My rods are joined at t9,10,11 area. I am more careful because of that.
    I find some things require different approch.And like Susy Bee I can not roll around with the grandchildren. My least favorite things are the car,getting dressed,opening heavy doors and walking on a windy day.{It makes me feel like a kite!}And I live near Chicago and it is windy a lot.
    I cannot assign a number yet--there is a reason for this,but maybe soon.
    Thanks Ed for the topic!

  10. #10
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    Quote Originally Posted by JuliaAnn View Post
    Now at 8 months, it's all sinking in.
    Well.....this is why I started this thread. To help others realize that scoliosis surgery is in a class of its own and can’t be compared to many other procedures......Its serious stuff, and it’s a life changing procedure and process. “Adapting to mobility”, the title of this thread, covers just what it means. It might be the first question that arises in everyone’s minds, but covers just a small understanding of what long fusion surgery entails.

    A good friend of mine had a fake aorta installed around 10 years ago and he recently came back from Hawaii for a mainland visit. He informed me that he needs more surgery because of ADHESIONS from his massive anterior, Similar to Karen Ocker’s testimonial.... I never KNEW about this and I consider myself fairly active in reading about scoliosis and its complications.....after all, its my disease......Karen, we hope your ok.

    Sometimes we have no choice and we have to do what we have to do because we are at the end of the rope.... There are others that are not quite there yet, that CAN take the time to get themselves prepared. I know its hard for us to try to “grasp” all of the medical lingo, but its almost a necessary thing if we really want to be prepared for what’s around the corner as we age.

    For seasoned members that have “been there, and done that” these testimonials are of great value to other scoliosis sufferers that are out there......active posters or not. I can also imagine not being able to assign a number Jackie, for some like you, revision patients, the process can continue for reasons we have no control over.

    I almost burned my steak writing this post......but I don’t sweat the small stuff anymore (smiley face)

    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

  11. #11
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    PS-- JuliaAnn-- I remember people from my church asking me "what went wrong?" when it was taking me a long time to recover. You just have to grin and bear it and explain it's the kind of surgery that takes a long time to recover from. You had total reconstruction of your spine. It's the same (about) as being hit by a Mack truck. You have to start from ground zero...

    I am 2.5 months postop and people of course have not asked me why I have not recovered yet....but when they see my brace or walking stick and ask, I show them my postop xrays on my cell phone. They usually say, "wow" or "How do you do anything?" The problem with our spinal surgeries is that our massive surgeries are invisible...unless you are at a nudist beach and then everyone could see your war wounds. Maybe I should go this summer and see the reaction!

    So, when someone asks, show your xrays!

    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

  12. #12
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    How much can you move or have range of motion at a year postop and after?

    I was ready to start a thread and saw Ed's [hope it's OK with you, Ed] and decided that my question was OK here since it seemed relevant to the thread.

    I am 2.5 months postop and wear a brace almost all day. When I do have it off, I sometimes "forget" my restrictions and will bend a little or twist a little and am amazed at how flexible I really am....I guess that I assumed that when someone was "fused" that you were stiff and sat up like military straight and had zero flexibility. I know that I am not yet fused, but when I am, what kind of range of motion can I expect?

    Also, HOW LONG DO PEOPLE USE THAT TONG EXTENDER FOR BUTT HYGIENCE AFTER A BM? Can I ever reach that far?

    Thanks, Ed for starting this thread. I am feeling quite hopeful in reading it!
    Susan
    Last edited by susancook; 06-02-2013 at 04:03 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

  13. #13
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    Susan

    I do have my mobility thread in my signature with some photos of me twisting and bending....Check it out.
    That thread covers me, this thread covers everyone with a full fusion......so if anyone has photos or videos of mobility, by all means, post them.

    Suzie Bee and others constantly remind me of things I would never think of......this proves the value of the forum....information that doesn’t get covered in any books hopefully get covered here.

    When will Dr Hu release you from the brace?
    When she does, she will probably have you just wear it when you leave the house. Remember, try NOT to fall. That should be a priority.......

    It takes 12 months for bone to fuse......plus or minus about 9 months dependent on age and body chemistry. This is also not guaranteed and fusion mass can be as hard as a rock, or end up as soft as cheese cake.....disrupting this fusion process too early with a fall is like hitting your finger with a hammer after you put the band-aid on it. We know that doesn’t work too well....

    I healed at a rate of approx 10% per month. That’s the easiest (adult age 50 formula) to remember....If you are 2.5 months, figure 25% plus or minus 10%. I was still VERY delicate at 2.5 months.....just walking short walks often and sleeping often. I hardly left the house for the first 3 months.

    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

  14. #14
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    Quote Originally Posted by titaniumed View Post
    Susan

    I do have my mobility thread in my signature with some photos of me twisting and bending....Check it out.
    That thread covers me, this thread covers everyone with a full fusion......so if anyone has photos or videos of mobility, by all means, post them.

    Suzie Bee and others constantly remind me of things I would never think of......this proves the value of the forum....information that doesn’t get covered in any books hopefully get covered here.

    When will Dr Hu release you from the brace?
    When she does, she will probably have you just wear it when you leave the house. Remember, try NOT to fall. That should be a priority.......

    It takes 12 months for bone to fuse......plus or minus about 9 months dependent on age and body chemistry. This is also not guaranteed and fusion mass can be as hard as a rock, or end up as soft as cheese cake.....disrupting this fusion process too early with a fall is like hitting your finger with a hammer after you put the band-aid on it. We know that doesn’t work too well....

    I healed at a rate of approx 10% per month. That’s the easiest (adult age 50 formula) to remember....If you are 2.5 months, figure 25% plus or minus 10%. I was still VERY delicate at 2.5 months.....just walking short walks often and sleeping often. I hardly left the house for the first 3 months.

    Ed
    Thanks Ed! Great info. The best part of this forum is the variety of experiences and the "handy tips" for getting though the day with limitations.

    Dr. Hu advises wearing the brace for 6 months, now [at 6 week checkup], I was given a break of 20 minutes 3 times a day. She probably increases the time off progressively....I made that part up, I'm just hoping that she does. In truth, I like it as I feel protected.

    I call my brace "Hot and Holey" as it is sweaty inside and I had them drill holes in it for heat relief [he said that it would not make a difference, and I don't think that it does, but it surely is stylin'].

    Irina always tells me to be patient, and I tell her that I feel like that vulcher on the perch who says, "Patience, my ass, I'm going to go out and kill something". I am tired to being limited and asking for help. I am an impatient patient.

    I will be 67 in August and although I do not have osteoporosis by hip measurement, when I fractured my ankle, the surgeon said that my fibula was osteoporotic and Dr. Hu had to use hooks in some of my thoracic vertebrae as they were osteoporotic. Unsure where my age and bone status fit into your formula, but I'm thinkin' that my fusion will be between 1-2 years.

    I have not fallen but that definitely scares me. I use a walking stick for stability. I wear my brace all of the time when walking.

    Again, thanks for support and information. 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

  15. #15
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    It's almost 5 years since my surgery, fused T3 to L3. On Ed's scale, I would give myself a 9. There isn't anything that I WANT to do that I CAN'T do. Of course, I'm not the adventurous type like our friend Ed

    If I explain my spine to someone new at my zumba class they say they are amazed that I'm fused as I am. For the first couple of years, I was very careful with everything I did and was conscious of my movements. But now, most of the times I forget about it myself and just do everything naturally. The fused state becomes the new normal. I even amaze myself sometimes thinking....wow I don't believe I just did that.
    __________________________________________
    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

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