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Thread: 3 Years and 7 Months Later...

  1. #1
    Join Date
    Feb 2011
    Location
    London, UK
    Posts
    102

    3 Years and 7 Months Later...

    Dear All,

    It's been a while since I've posted here and for that I apologise. For the pre-op forum trawlers, I'm well aware of the importance of finding positive posts within the plethora of those regarding complications, pain and revision surgery. Here is mine.

    My Scoliosis journey has been rather fortuitous thus far. I was diagnosed with scoliosis at 12 years old after getting checked out for some on-off back and shoulder pain I was having. The double curvature was fairly mild and, like many, I was advised to return to the hospital every year to check for progression - this went on for another 12 years. Over that time my back pain worsened and my stamina in daily life decreased. Giving up contact sports at school, limiting the hours I could practice music (my posture whilst playing the 'cello seemed to aggravate things and I eventually had to give it up), needing to stop and lie down multiple times a day and sometimes just needing to stay home altogether when I should have been at university lectures etc... These things are often part and parcel of the scoliosis journey.

    At age 23 I had the appointment with my surgeon (Gavin Bowden) that determined my curvature was not going to stabilise, and at 60deg thoracic and 40deg lumbar it was time to operate. A daunting prospect for all.

    I spent most of my time researching after that, watching videos of the operation and spending hours searching through forums trying to work out what I should expect. Most of the time I'd come across horror stories regarding paralysis or chronic pain and, although these things CAN happen, no one ever told me that a lot of the time those with successful outcomes go off and live their lives and don't post any more.

    My surgery was on the 3rd January 2012, they fused T3 to L1 and it took 9 hours. The first few days afterwards were probably the hardest of my life so far. The pain is pretty astounding but, for me, the hardest part was, when the anaesthetic had subsided and I was wheeled into the ward, I had an overwhelming sense of aloneness and a total lack of control. This was probably not helped by the hospital staff who, bar one, rarely spoke to me with compassion or made me feel looked after.

    It seemed like progress was slow for the week in hospital and although I didn't feel ready, I headed home with my parents. This was when things took a turn for the better. It must have been my mums cooking. Day 1 at home was tough as I spent it throwing up from the medication (bad idea... pain...) but form there I made unbelievably swift progress. I was walking more and more every day and feeling happier and more comfortable by the hour. The pain was subsiding at such a rate that in under 3 weeks I was completely off any pain medication (having been given 3 months worth..). After 3 months I moved out of my parents back to London and instantly got back to work going on a 2 month tour singing.

    Since then I haven't been restricted once. Physically I've been able to do everything I want to - surfing, climbing, hiking, skydiving etc... with next to no issues. After particularly intense days I sometimes find my lower back takes a bit of time to ease in when I lie down so I know I need to address this and strengthen it with exercises. I'm sure it's because those lumbar vertebrae and discs are taking all the strain now that most of the rest of my spine is fused (do you think this is a fair assumption?). Every few months I may also experience a short sharp pain in my ribs but that used to happen before too. Apart from these minor issues I'm trouble free and often forget about what happened completely.

    So that's about it. Away from the spine related, all is going well. I'm still singing and loving my new-ish lung capacity. Things are busy and I'm getting to sing all over the world with trips to Morocco, Portugal, South Korea, France and Costa Rica coming up in the next few months, then I'll be taking a little time off at the beginning of next year to go and see the world on my terms

    I hope this has helped a little bit to convince anyone who needs convincing that this operation can fix you. I know things can go wrong, drastically for some, but it can also go very right. Thanks to wonderful forums like this everyone is able to make an informed decision and, whatever it is, I wish every one of you all the luck in the world.

    Billy x
    Billy
    32 year old male from UK
    Fused at 25yrs
    62 degree thoratic curve
    45 degree lumbar curve
    Fused T3-L1 on 3rd Jan 2012

  2. #2
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,262
    I am so glad to hear from you Bill . I am equally glad to hear that things are going so well for you. You are correct that people tend to disappear after surgery. Please keep in touch to continue to let others know that you are doing well.
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  3. #3
    Join Date
    Jul 2011
    Posts
    535
    Great to hear!
    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!

    http://thebionicachronicles.blogspot.com/

  4. #4
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,712
    Bill,
    It is great to read that you are doing well after your surgery and back with your singing career! Wonderful news!
    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/

  5. #5
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,394
    Yes, great news Bill.....

    How long did it take till you felt you weren’t improving anymore? Or at least 95% completed with your recovery?

    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

  6. #6
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Great to get your follow up Bill! Have wondered how you were going. Enjoy your life!
    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

  7. #7
    Join Date
    Feb 2011
    Location
    London, UK
    Posts
    102
    Thanks for your replies and kind words everyone.

    Quote Originally Posted by titaniumed View Post
    Yes, great news Bill.....

    How long did it take till you felt you weren’t improving anymore? Or at least 95% completed with your recovery?

    Ed
    Ed, It was probably around the 3 month mark if I'm honest. The only thing holding me back then was the mental worry of, because I felt fine, doing too much too soon. I could still feel the metalwork as I still can but there was no discomfort or any negative feeling towards it.

    B
    Billy
    32 year old male from UK
    Fused at 25yrs
    62 degree thoratic curve
    45 degree lumbar curve
    Fused T3-L1 on 3rd Jan 2012

  8. #8
    Join Date
    Aug 2009
    Location
    St. Louis Missouri
    Posts
    50

    Most pain is sugeries fused to sacrum

    Bill...glad to hear you are doing ok.

    But most severe pain post surgery patients, I believe, have been fused all the way down to sacrum.

    My first surgery 40 years ago was down to L3.

    Was ok for probably 30 of those years.

    Now since I am fused now down to sacrum, pain and limitations are constant.

    Thanks for your input.

  9. #9
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,394
    Age 23, 3 weeks of meds, and a 3 month recovery.....

    Its almost hard for me to believe.....I just started flapping my wings a little bit at that point. Well, only one wing since the other was broken.

    Thanks for posting.....Its nice to read these testimonials....

    Got any more music vids?

    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

  10. #10
    Join Date
    Aug 2014
    Location
    Kansas
    Posts
    14
    Billy,
    I understand completely what you mean and why you started this thread....I am 29 and hit my 1 year anniversary July 28th. In fact my 1 year check up is this Monday. I am on the forums often but no longer with all the questions, mostly just browsing now. I am fused T4 to L5, I chose to not fuse to my sacrum.... not sure how that'll pan out but I have high hopes. I am back at the gym at least 4 nights a week, lifting again "no squats or dead lifts' and I began running again 6 months post op. My stamina is back and my core is back to itself again. I am a cosmetologist and am feeling well enough to open my own salon at the end of the month!
    I guess what I am saying is....I too read so many posts that make me so sad for people, pain sucks...hurting sucks! I have bad days, mostly if I over do it and 9 times out of 10 it's in my shoulder blade area at the top of my fusion. But I would say I am doin alright!
    I am so glad to hear your doing well! I found your story to be quit uplifting! Keep on livin!!!!
    Ronee

    Fused July 29th 2014 T4 to L5

  11. #11
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    1,053
    Very nice to hear that both of you are doing really well. Young people getting on with their life . It is great!
    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

  12. #12
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,394
    Very nice to hear all three of you are doing very well. Young people getting on with their life. (smiley face)

    Well there Mrs Krier, so glad to hear that things are fantastico! Whoo Hoo! Still waiting for those Belize photos.....

    Jackie, Its hard to comment on your situation being such a rare thing......maybe one in a billion? I guess when you think about how special we all are, we are all one in a billion.....

    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

  13. #13
    Join Date
    Feb 2011
    Location
    London, UK
    Posts
    102
    Quote Originally Posted by dailypain View Post
    Bill...glad to hear you are doing ok.

    But most severe pain post surgery patients, I believe, have been fused all the way down to sacrum.

    My first surgery 40 years ago was down to L3.

    Was ok for probably 30 of those years.

    Now since I am fused now down to sacrum, pain and limitations are constant.

    Thanks for your input.
    I'm sorry to hear of your discomfort and am aware that for some who have been fused to sacrum, the pain is debilitating. I hope you know I'm not trying to pull the wool over peoples eyes that their are risks - I just wanted to give testimony that things can go well. Might I ask what happened that meant you had to have surgery to sacrum after your initial fusion?

    -

    Ed, I'm sure there are plenty of videos knocking around, yes! I'll have a look and post one soon for you guys.

    -

    Yes Mrs. Krier! Glad to hear you're moving on with things I'm looking to get into some kind of exercise regimen specifically to strengthen the rest of my back that isn't fused... Any ideas what would work best? Should I be looking for a yoga/pilates route? Have your sessions at the gym been helping?


    B
    Billy
    32 year old male from UK
    Fused at 25yrs
    62 degree thoratic curve
    45 degree lumbar curve
    Fused T3-L1 on 3rd Jan 2012

  14. #14
    Join Date
    Aug 2014
    Location
    Kansas
    Posts
    14
    Billy,
    YES! Since I've started back up at the gym my flexibility has improved greatly! As far as your workout, I was told that I needed to keep a strong core and work the hip and butt muscles because all of them will play a huge role in supporting the fusion. I saw a sports medicine doctor just for input and he agreed with all the above. Start with cardio, stick with an elipticle or eliptamill because there's less impact on the lower back, for your core....a stability ball is going to be you very best friend! It'll support you back completely while doing ab workouts. I even lie on the ball while I do presses because the pressure feels way better then that of the actual bench used to bench press. Planks are a big one too, there's a ton of diffrent versions of the plank to keep it changing! Best of luck....I can't wait to hear how you feel after starting, I had a huge burst of energy and regained some of the old me!!
    Ronee

    Fused July 29th 2014 T4 to L5

  15. #15
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,394
    Quote Originally Posted by Scoligal85 View Post
    I had a huge burst of energy and regained some of the old me!!
    This is so nice reading this.....I am so happy for you Ronee......

    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

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