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Thread: 2 Years 4 Months post op

  1. #1
    Join Date
    Nov 2012
    Posts
    88

    2 Years 4 Months post op

    Greetings brave friends.
    I'm a bit quiet but still here. I just thought I'd check in and share something I wrote at three months post-op. I don't even remember writing it.
    =============
    3 months post-op

    Up with pain from 4 am to 9 am. I think I'm going to study babies. They thrive quite well by being up all hours of the night. I think their secret might be multiple naps during the day. ... "Good luck on that," she said to herself. haha

    The pain is multi-dimensional.
    There is pain from severed nerves regenerating. I experience random stabs that are identical to being plunged with a long hypodermic needle. Much to my embarrassment, the stabs usually make me yelp. The pain lasts about 30 seconds and then fades. It never reappears in the same place twice, evidence that that particular nerve made it’s connection. To deal with this, I picture a spindly little nerve reaching out its fingers, trying to grasp the next nerve in line. When the connection is made, it lights up as healing energy and electricity flow through it. It’s a brief flash and then the nerve hums with happiness to be back online.

    Another pain is the vertebral and pelvic bones repairing from being drilled with 29 holes. From neck to hips I’ve got some serious aching going on. I watched our neighbor put in a septic system. The machinery lowered the huge auger into the ground, churning up the soil and ripping through roots. Yeah, that.

    But the most aggravating pain is muscle pain. It feels like my arms were ripped off and sewn on upside down. And as if my torso was ripped in half and sewn on crooked and twisted. Even though the surgery corrected my scoliosis curvature, the muscles retain their twisted memory. They ache and spasm, trying to accommodate this massive change after 53 years of living.

    For the first four weeks after surgery, my muscles were confused. If I closed my eyes, I was unable to tell whether my arms were down by my sides or extended over my head.. Lying flat on my back with my eyes closed, I remember wondering “Where are my arms? Where are my arms!!!” It was an alarming thought. Still with my eyes shut, I would move my hands to identify where they were on the bed. “Oh, my arms are down by my side. Ok.” The disconnect was strange and unsettling.

    At 3 months, I find many of my movements to be sloth-like, slow and strangely anti-gravity in motion. I raise my arm and the movement is smooth. I lower my arm at the exact same speed, with no evidence that gravity is pulling my arm down. The muscles across my back move with great deliberation.

    ================================
    I wrote that so long ago! Wow, the time passed slowly but beautiful in a way.
    I’m really glad I wrote that. Post op seems to be an other-worldy time, brutal and nearly unlivable. I remember weeping for many months. I should have called the surgeon and asked for another prescription of narcotic when mine ran out just 3 months post-op. But I didn’t. I was stupid and just toughed it out with Tylenol. Who on earth does that? Oh my goodness, that was insane.

    ================================
    And now here it is, 2 years and 4 months since my surgery. I am very well indeed.

    One memory I still have though, is from before surgery, when my back was broken. Those were months of searing pain with no relief. But more than the pain was the terror. I don’t like remembering how perilous I was living. Such fear! The grinding and popping and Knowing exactly what the grinding and popping was. The death grip I held with my right hand, sometimes with both hands, on my waist to literally keep my spine together, to keep the top half of my body from slipping off the lower half. Pushing a gallon size bag of ice in between my super tight back brace and holding my breath as I used the hard ice to push my bones back up on top of each other from where they slid. The frantic prayers “God, please don’t let me break in half!” as I tried to lay down at night and then get up in the middle of the night. The gold stars in my vision and hyperventilating to keep from passing out every time I moved from sitting to standing and my spine shifted. The streaks of numbness down my legs and across my feet. The incontinence and loss of bowel control. Perilous and frightening. It was a journey that I didn’t tell anyone and no one could accompany me. I was incredibly stupid. Because I knew without a doubt that my back was broken and I was living on borrowed time.

    Three weeks after surgery I went back to the hospital because my pain was so severe. Everything seemed ok. One doctor told me “You were told in addition to your surgery, you are also healing from your injury, right?” “Yes,” I lied. I wasn’t told. But having a broken back was something I didn’t talk about to anyone and they didn’t talk to me. It was an unspoken part of my condition, which was strictly scoliosis corrective surgery. I don’t know if the insurance would have covered it the same so perhaps that was why we didn’t talk about it. But I watched their eyes, the caution, the tiptoeing they all did around me. I felt in charge and I was comfortable with that.
    “I need surgery for scoliosis,” I told them.
    “We can do that,” they stated.
    That was all.

    It took a full 24 months after surgery until I started to feel healed. It took 24 months until I started to walk faster. But that was due to an error the surgeon made in the correction. He didn’t realize my pelvis was higher on my right side so his perfect pelvic fixation, 90-degree spine-to-top-of-pelvis correction, actually gave me a permanent lean to the left. I now need a significant 5/8+” lift in my left shoe and must always sit on something under my left hip, such as a sweater or scarf, to raise my left hip so I can sit straight. I knew the very first time I stood up post-op, even on strong pain killers, that something was wrong with my correction and actually mentioned in the hospital that I was having trouble walking post op. That’s because I didn’t know that I now needed a 3/4” lift in my left shoe. I never had trouble walking before surgery. Getting the lift immediately would have sped up my healing exponentially!!! After surgery, all they had to do was measure my height standing on my left leg and compare it to my height standing on my right leg. Now how simple is that! We would have noted the 3/4" difference immediately post op.

    At two years post op, the pain diminished rapidly and I now I finally feel excellent. I'm glad I got scoliosis surgery! It was very very worth it.

    At 28 months I think I might be strong enough now for a very light jog. But I’ll give it a couple more months first. I want my pelvis, with those four big bolts, to be completely strong. I've managed to lose 15 pounds and get more muscle mass than I had before surgery. I feel 10 years younger and life has a lot of good ahead.

    To all of you thinking of surgery, it it Totally Worth It!!!! And don't get discouraged before you've had a good two years of recovery. You'll be amazed at how your body continues to repair. I'm 56 years old and have no doubt that I'll feel even better this year.
    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

  2. #2
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    570
    Congratulations! Glad to hear you are doing well.
    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

  3. #3
    Join Date
    May 2009
    Posts
    3,745
    very happy for you, Julia Ann
    but i thought running of any kind was the one activity forbidden
    after fusion....please be careful.

    jess...and Sparky

  4. #4
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Great to hear that, at last, you're feeling "excellent!"

    As Jess mentioned, please check before you jog. You still have the unfused vertebrae to consider. They will be taking all the bouncing.

    I was told no running. I walk fast, for long distances instead. I feel fit as a fiddle.
    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

  5. #5
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,551
    Julia

    I will never forget your pre MRI.....that was quite a shocker.

    On the jogging, you might try a fast walk......bouncing isn’t a great activity for us....

    I recently went horseback riding, and in using the stirrups you can prevent the bouncing so that all worked out quite well.

    You made it..... Huge congratulations!

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  6. #6
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Julia,
    It is uplifting to read how well you are doing. Congratulations! You have come a long way!
    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. #7
    Join Date
    Aug 2014
    Posts
    170
    Good grief, Julia Ann - your preop x-rays look a lot like mine, except I only had three broken facet joints, and my vertebra moved from back to front (instead of left to right or vice versa). I always had one slipping in front of or in back of the vertebra below (L4-5 on L5-S1). I walked around for four years with two broken facet joints, and they had me on the emergency surgery schedule back then because my spine was not stable. I waited four more years.....until I broke another facet joint at the level below the first two that were broken.

    I had an audible "clunk" when I would lie on my stomach and the massage therapist would (gently) work on me - a clunk when the vertebrae realigned. As soon as I stood up, they were out again. The area from about L2 through S1 was a mess, had torqued/turned, and I needed two cages plus an extra rod (a third rod) from L2 to the sacrum to try to hold it all together.

    Anyway, I find your story very helpful - thank you. You've given me hope today on a day when I needed it. Your original post was beautiful. As I'm sure you know, some days you don't have any hope that things will ever get better, then you notice one little thing, then another, and another.....I'm just an impatient soul and I need things to happen MUCH faster than they are.

    I'm happy you are doing so well. I've been either crying or screaming at my husband (who deserves a medal for his patience and tolerance....and for not admitting me to a mental institution) for the last couple of months. I can't seem to find a balance on the meds. Anyway, I'm glad you posted today. I needed to hear your story.

    Thank you and I will keep you in my prayers for continued good health!

    Hugs!
    Fifa

    EDIT - Sorry, it is late and I am tired, but your original post was so meaningful to me because I had surgery November 10th, so I'm just a few days away from being three months out, and I've been so hopeless (mostly medication induced).
    Last edited by fifa; 02-04-2015 at 03:00 AM. Reason: see EDIT note in post

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