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Thread: Susan's surgery at UCSF with Dr. Hu on 19 and 22 March, 2013

  1. #511
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    Dearest Susan,

    I have been beyond busy this week with work/kids/visiting relatives, but I just got caught up on your posts… I never made it to the two year mark after my original surgery either, and it was incredibly difficult to mentally cope with everything in recovery being reset to zero. Fast forward to now where I am 2.5 years post revision, and in October it will be 4 years since my original surgery. I made so many improvements after the 2 year mark! I still feel that I am making improvements in ability to move and other things. I took tylenol twice a day every day at the two year mark, and I maybe take tylenol 3 times a week now, usually in the evenings after a long day.

    As far as how it happens to us to be "the one" to have the rare complication, at work we refer to it as "the friends and family" plan (remember those dumb old cell phone commercials?). I am a hospital nurse and so many of my coworkers and their families have had unusually bad things happen to them medically. It seems like the bad things happen more often to the nurses and their families! My point anyway is it is apparently random and we never give a thought to rare complications until one happens to us or someone we know. I simply do not believe we are chosen and that this stuff happens for a reason. My beliefs go along the lines of "shit happens." Just my two cents worth here!

    Take care and thanks for keeping us posted. Your fan club is following along.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  2. #512
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275
    Hi Susan!

    I'm glad you'll be going home soon!

    Please tell me what PJF & PJK stand for. I tried to search the internet, but got a bunch of jibberish! I'll be having my scoliosis surgery soon & there'll be a procedure to try to correct kyphosis, so I'm curious.

    Praying for lots of improvement & strength as you adapt to your new normal at home - May your progress increase your independence!

    I have learned a lot from you. I sincerely appreciate your posts AND your sense of humor!
    Peg
    61 yrs old
    75 degree lumbar curve with thoracic kyphosis
    T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
    Working on healing in Columbus, Ohio!

  3. #513
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    PJK: proximal junctional kyphosis
    PJF: proximal junctional failure
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  4. #514
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275
    Thanks, Gayle!
    Peg
    61 yrs old
    75 degree lumbar curve with thoracic kyphosis
    T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
    Working on healing in Columbus, Ohio!

  5. #515
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Susan--I feel like I've been reading a drama catching up with your experience but always your courage and sense of humor comes through. I don't know how you do it! Hope you are done with setbacks and there is smoother sailing (and walking!) ahead. Many prayers and positive thoughts for you. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  6. #516
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,598

    Home tomorrow!

    Home tomorrow! I started this journey on August 7th when I walked into my Internal Med MD office with leg weakness. The summer has passed me by. Bummer. I can walk 75 feet with a walker and spotter. I cannot get up from the ground if I fall, so I guess that I will not plan to fall. I practiced and practiced, but my legs are too weak when I have them folded under me.

    Again, I start the "two year plan". I plan to work hard to get back to the "old Susan". I miss her. I have my 6 week appointment with my spinal surgeon tomorrow. I have a few questions for him, mainly how to prevent a misplaced screw in the future. Screws that indent the spinal cord can't be good.

    Thanks everyone for your support.

    Susan.....in a rad wheelchair
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe 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 Spinal Cord Injury T4,5 sec to PJK
    2015: Revision 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

  7. #517
    Join Date
    May 2009
    Posts
    3,745
    hi Susan
    so that means you are meeting with surgeon who did your
    emergency surgery....not with Dr Hu....yes?

    i hope you make progress every day....bit by bit, small tiny
    steps, leaps and bounds, miniscule little bits of progress...
    any old kind of progress....just so it is going in the right
    direction....and slow CAREFUL steps forward at home.

    wishing you only the best....
    jess...and Sparky

  8. #518
    Join Date
    Jul 2012
    Location
    Warsaw, MO
    Posts
    373
    Susan,
    I have had you on my mind and in my prayers. Going home is a positive thing. Means you are gaining some strength. Take it slow and don't get discouraged.

    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)

  9. #519
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    Susan - that is great progress! It will be so nice to be at home again!!! I sure am praying for your safety and continued progress. Just remember, as you said, it's baby steps that will get you "there". Do you have a plan in case you do fall? Is someone with you or do you need one of those medical alert buttons that you wear? Just in case. You are so strong and determined that you will build yourself up, even though it will take time and work. And we are all rooting for you. Cyber hugs and love, Susie
    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

  10. #520
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    881
    I hope your journey home went well. How was your Dr visit? Glad you got to go home .

  11. #521
    Join Date
    Feb 2014
    Posts
    99
    Hi Susan,

    Just wanted to chime in that I am thinking of you as well and very happy to hear you're heading home. I'm sure being home will help your healing process.

    Please keep us posted. Maybe if you have Netflix or Amazon you can get into some good distracting tv for the down times...
    Surgery Jan 6, 2014 at 38 yrs
    Posterior Fusion T10-L4, osteotomy 1 lev.
    Pre op-Thoracolumbar Curve-50 degrees

  12. #522
    Join Date
    May 2009
    Posts
    3,745
    hi Susan
    thinking of you at home...must feel good to be back home,
    even though you won't have the hospital staff around you...

    i hope therapists....OT, PT, etc....are sent to your home and
    that you do not have to travel anywhere for that...

    wishing you healing days, restful nites, progress towards your
    goals(no matter slow or fast, just progress), and better days to come...

    jess...and Sparky

  13. #523
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978

    Susan

    Your message box is full.
    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

  14. #524
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Hi Susan,

    Best wishes for your continued recovery at home. You've come a long way since August 7th.
    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

  15. #525
    Join Date
    Jun 2013
    Location
    Muskoka, ON Canada
    Posts
    98
    Susan, glad you are home again. You have been through so much, I know your recovery is slower then you hoped for.
    Wishing you all the best like every one else on the forum.
    ((Hugs))
    Marianne
    rotoscoliosis, subluxation and spinal stenosis
    Surgery April 15, 2015 at age 67
    T11-L5
    Decompression with multiple discectomies
    Concord cages @ L2-3, L3-4, L4-5
    Osteotomies and local bone grafting
    Revision Feb.22, 2018
    Replaced rods
    Took out L5 disk to free up nerves
    Used BPM to help with fusing
    Fused T10-S1 with screws in pelvis

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