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Thread: setting realistic expectations for life after scoliosis surgery

  1. #1
    Join Date
    Mar 2016
    Posts
    153

    setting realistic expectations for life after scoliosis surgery

    - having a job that demands a large amount of travelling ( like switching cities and home)
    - having a lifestyle or job that demands use of light/moderate force for endurance or casual lifting.
    - have kids

    Let's be real.
    I would like to hear real stories or opinions of those who have endured the surgery in their early 20's or so.

  2. #2
    Join Date
    Jul 2012
    Location
    Warsaw, MO
    Posts
    373
    It is hard to gear your results to someone else's due to surgical complications or recovery. Some have absolutely no problems with travel and some can't take being in a care for more than thirty minutes. Some of us have kids requiring much attention (I have four) and some have nine or that are fully grown. I was blessed to have a great support system each and every time I was having surgery or a bad day. I drive 45 minutes to work and 45 minutes home. My job takes a lot of mental and physical strength for I work in medical.

    My realistic advice is to not compare your situation with anyone else and to make sure you take the necessary precautions, recovery time, and support system that you need. The more you put into recovery and the slower you handle the healing the stronger you will become. Your case will be different than every member in the forum because not one case is alike. So only you can set realistic expectations for life after surgery.

    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)

  3. #3
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    1,079
    I agree with Tam. But realistically you can do most anything but maybe just a little different or maybe it will take you a little longer, after you are healed approach everything with the attitude that allows you to figure out how to accomplish it, You will be fine and find your limitations are few.
    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
    Osteotomy

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,213
    Quote Originally Posted by richardis View Post
    - having a job that demands a large amount of travelling ( like switching cities and home)
    - having a lifestyle or job that demands use of light/moderate force for endurance or casual lifting.
    - have kids

    Let's be real.
    I would like to hear real stories or opinions of those who have endured the surgery in their early 20's or so.
    If you were a patient at UCSF, you would likely have been released to do all of the above by now. If you can't do it, you might want to start questioning why.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  5. #5
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    567
    I can't comment on a large amount of traveling, but we just came from a vacation in Japan. We stayed in Japanese style accommodations, ryokans, for 11 nights plus 2 nights in western style hotels. Ryokans are different from western hotels in a sense that there are no chairs in the room, only pillows, and you sleep on tatami mats, which are a few thin mattresses, not even close to those cushy western style mattresses. I wouldn't do it again because I like more comfort, but I didn't have any back pain from substantially sleeping on the floor.

    Flight was a breath, I just always take a small pillow with me. We visited six cities and moved by trains, so there was a lot of running between train stations with luggage. My legs were tired, but back was absolutely fine.

    I am one of the fortunate ones though. I try to be sensitive of people who are not as lucky, but happy to share if someone asks questions. Every time I come back from a vacation, I am thinking of my dear doctor Serena Hu, who gave me the ability to do the things I love.
    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

  6. #6
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,317
    I can't recall too many 30 yos posting about their life after fusion but I would be surprised if you didn't group with the adolescents. That is, I agree with Linda that I think your surgeon would have released you to do everything you mention. My kids have no restrictions (except for bungee jumping) nor do they feel restricted.

    You have a fusion that ends above the lumbar, your lumbar appears completely straight, and you appear to be hyper-corrected to the point that you no longer technically have scoliosis (residual curve <10*). Given that people don't bend too much anyway in the area where you are fused, I can only report that my twins report feeling normal. My one daughter has a slightly longer T fusion than you but was hyper-corrected like you. The surgeon told her surgery was one-stop shopping for her. I suspect if you asked your surgeon he might say something similar or at least there is no reason to suspect at this time that you would need any more surgery in your lifetime.

    My twins resumed their lives less than a year after their fusions and never looked back. They have no reason to look back because they feel normal.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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