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Thread: New body

  1. #1
    Join Date
    Nov 2014
    New York

    New body

    How do people come to terms with their new body? My fusion of T3 -sacrum with pelvic fixation was in January. I still feel like my body is not mine. Every move I make is different than before. Plus I am still in a lot of pain, so reaching for things, using the bathroom, sitting for a long period of time, giving someone a hug, doing things in the kitchen. ....everything is different. Everything. Every damn thing. I try to ignore it, or I think about it and then get very upset. I feel like I can't escape this world of being a scoli fusion patient. Does that go away? When? How?

  2. #2
    Join Date
    Dec 2008
    It is very different for sure. It takes time and even then it takes doing about everything different. At about 2 years it just seemed to become a way of life. Even after 6 years I do not sit well, so I plan on where to sit. Whether it is eating out or going to the movies, it requires a plan to sit were I can stand if needed. I love to garden so most of my plants are now in pots so I can have them up higher. I can get all the way to the ground but often can't reach well.
    When do you get used to it---slowly over time. I still protect my spine in a crowd. I don't want anyone smacking me on the back. Getting in or out of a car--I still back in and then turn . It will become a way of life. The pain should go away or greatly lessen soon for you.
    Do try to be patient with yourself. It does take at least 2 years. And then one day you don't even think of it.
    T10-pelvis fusion 12/08
    C5,6,7 fusion 9/10
    T2--T10 fusion 2/11
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16
    Broken neck 9/28/2018
    Emergency surgery posterior fusion C4- T3
    Repeated 11/2018 because rods pulled apart added T2 fusion
    Removal of partial right thoracic hardware 1/2020
    Removal and replacement of C4-T10 hardware with C7 and T 1

  3. #3
    Join Date
    Apr 2012
    San Jose, CA
    I think that you'll feel more comfortable in your body when your pain subsides. I also felt like I was transported into someone else's body in the beginning, but not anymore. People who didn't know me before the fusion tell me that they would have never guessed that I am fused (I am t6 to sacrum).

    Are there any things that are easier to do now than before? Like walking, standing? I always thought about things that became better after the surgery and it helped. It will get better, ksmom, hang in here.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  4. #4
    Join Date
    Jan 2012
    Yacolt, WA
    How long were you in your "old" body with scoliosis? A long time! Give it time and you will learn to like your new body. Sure, there are some things that are different after surgery. The fact that you are still in a lot of pain makes your moves tentative at best, your disposition unsettled, and your mood kind of depressed from all of the sedative pain meds. The best part after I finally got off pain meds, started exercising and walking, and resumed my social and friend lives was the lack of severe pain and restrictions that I had preoperative. I didn't have to sit down every half block or lie down with ice packs on my kyphotic back like I did before surgery.

    Yes, you will never escape from the world of being a scoli SURVIVOR.....we are a unique club and have the battle scars to prove our toughness. I say that in a good way. Give it time. Get a pedicure, treat yourself to lunch in nice restaurant with a good friend [don't stay too long], get your haircut/colored/whatever, rent a movie and invite a friend good to yourself! You deserve it, and things will gradually and slowly improve.

    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

  5. #5
    Join Date
    Jul 2011
    3.5 years postop, I'm still not used to my new body. It took me a solid 1.5 years to come to terms that I need help in certain situations. I have daily pain at varying levels but have been off all meds for a year due to lifestyle changes. I'm am absolutely thrilled I'm at the point where I am now. It's never been easy, still isn't. I feel my hardware with most movements and that is still such an odd feeling. I was bedridden with pain in the year leading up to my surgery, so it's amazing I'm able to live a new life I never imagined. The postop pain is completely different from preop pain, but it's manageable now.

    You'll continue to see improvements in the years to come.
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

  6. #6
    Join Date
    Oct 2014
    I'm guessing you have better days and worse days, like I do. We are month twins, having our surgery in January. I was going along great and thinking how much better I feel, and then today, I have a pretty big pain (for me) mid back this afternoon and I worry that something is wrong, or if I shouldn't have been sewing, which probably makes me bend forward more than I should. Hopefully tomorrow will be better. There is a down side to feeling good and that is in thinking you can do whatever you want, which is probably not advisable six months post op. It's hard to know what you really should be doing sometimes.

    Have you been to physical therapy? I found that SO helpful as far as making me feel more normal. Maybe it gave me too much confidence. I can get down on the floor much more easily and my legs and abs are much stronger which also increases my mobility. They also worked on stretching my hamstrings and other places that I don't know the names of.

    I hope you feel better soon. I think it will get better.
    Before 39* lumbar at age 18, progressed to 74* lumbar and 22* thoracic age 55
    ALIF Jan 13, 2015, PLIF Jan 15, 2015 with Dr William Stevens, Honor Health
    Fused T-7 to S-1 with pelvic fixation

    After 38* lumbar



  7. #7
    Join Date
    Nov 2014
    New York
    Thank you for all the support and kind words. All of you made many good points. The continued pain, the current muscle limitations are things I forget will get better with time. When you're stuck in the middle of it, it's hard to realize there is a light at the end of the tunnel. I'm happy to hear that some (hopefully most) people just learn to live with this new body without thinking about it all the time. I just want to detach my head from my body and live without the body for a while (not literally, of course). It's helpful to know others have gone through it and have learned to adjust, and that some people still struggle. That's reality and that helps me prepare for things and not get disappointed. Thank you all again!

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