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

  1. #481
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,607
    Quote Originally Posted by jrnyc View Post
    sounds like a "code blue" yes?
    i had one once, years ago...saved my life...i had 2 hours
    of oxygen left in my blood at the time....and i was already
    IN the hospital when it happened...had i not been, i might
    not have made it...
    but when they all came rushing into the room at once, all working
    on me at once, putting in a triple IV line, catheter, etc...all at
    the same time...i was too out of it from septecemia (splg?)
    and 103.8 fever to really realize til later what was happening...
    and i was hallucinating music playing too...(there was no music actually coming from anywhere)

    i am glad the thrombosi... or whatever you call the plural of that...
    were taken care of without major damage being done...

    i am hoping and praying for you that what happened with your
    spine so many months after original surgery will resolve
    in a good way... with you walking again as the end result...

    best to you from me and Sparky
    Code Blue usually means that CPR is needed but "Rapid Response" is for chest pain.....or so I understand it.
    Generally, the Rapid Response team is looking for MI or Pulmonary Embolism.
    Susan
    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

  2. #482
    Join Date
    Mar 2010
    Posts
    2,748
    Susan,
    I'm glad that they caught the pulmonary emboli as quickly as they did.
    You are in intensive PT/OT because they are trying to make sure you CAN walk before you go home.
    They won't send you home unless you have a very responsible caregiver and aren't a super duper risk to yourself.
    You'll be fine!
    Remember, You'r back!

    (((HUGS)))
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #483
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,158
    Dear Susan,

    I have been too busy to post, but I read your posts every day if possible and I can't say enough how tough you are. Everyone above posted such kind, eloquent words so I would just like to echo those sentiments and send my support. It is incredible what you have been through these last few months. I know you are tough and that your great sense of humor is helping pull you through all of this.

    Please keep the updates coming. Your fans are following along.

    Fondly,

    Gayle
    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. #484
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    I will echo what Gayle just said. I have been following along as well and keep meaning to write... I'm having a little difficulty focusing close up right now due to my cataract surgery, but I always manage to get yours read. I am having the 2nd eye done next Wed. Gayle just said what I would have said, and everyone else has been saying it all before she did. (big smile). Susan, you are in my prayers and thoughts so much of the time. Please know that!
    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

  5. #485
    Join Date
    Jun 2013
    Location
    Muskoka, ON Canada
    Posts
    98
    Susan keep strong, you will get through this! You are a tough lady.
    Sending positive thoughts and well wishes.
    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

  6. #486
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,443
    Quote Originally Posted by susancook View Post
    I have so much more work to do before I leave. I am really scared that I will not be able to walk.

    Spinal cord injury recovery and healing continues on and on and can happen years after the injury.......never lose hope.....every day counts...

    I take it they want you up and moving all the time now....

    Stay strong

    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

  7. #487
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,607
    I walked in the walking frame today and basically came back to bed and slept soundly for 2 hours. Later when using the commode, I did a "controlled slide to the floor". Crap. Nothing hurt but pride. The walk was exhausting and I looked like Frankelstein. This a one of the premiere rehab facilities in the US. Almost all of the beds are full every day. There are people there with strokes, brain damage, accidents with neuro complications. There are quads and paraplegic and a gaggle of walking wounded....and not so much walking.

    I sent my statement of inquiry to OHSU a couple of days ago. Dr. Hu said that she would also send a letter to the university faculty who obviously could not figure it out.

    Meanwhile, I am dealing with my anger at the delay in diagnosis with the largest concern being, did the 2 week delay decrease my chance of a better outcome? Nobody knows. Spinal cord injuries are time sensitive. I am trying to deal with this and the implications that it will have on my ability to do the things that I want to do.

    Thanks everyone for your kind words. I will probably be here until 30 September and then go home and try to make it work. I am scared.

    Susan
    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

  8. #488
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    1,079
    Susan I don't have any words to make this journey any easier for you. This just doesn't seem like it should have gone ignored like it did before treatment. I think I would do what you are. Getting stronger first and then let the lion roar. The human body is hard to predict as far as outcome but we always want the answers. I am praying and hoping all gets better for you. Jackie

  9. #489
    Join Date
    Mar 2010
    Posts
    2,748
    Susan, if it makes you feel any better, I look like Frankenstein when I walk, too. People stare... I'm not used to it and am embarrassed to go in public. Some people just smile a pitiful smile. I've always tried to be aware of how handicapped people feel, especially since my dad. But you never really know until you wear those shoes, and mine get bigger every day. :-(

    I know that with my grandsons cut on the finger, they thought both nerves and the tendon were cut. They told us he had to have surgery within 10 days of the injury or the surgery wouldn't work. I'm not sure if it's the same for spinal cord injuries. Work on getting well. But it wouldn't hurt to hire a lawyer to do the worrying of the other stuff for you. He/she can collect the data while you work on healing.

    Best wishes and hopefully you'll at least be walking with a walker by the 30th.

    (((HUGS)))
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  10. #490
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,267
    You are such a inspiration to us all here.

    You are in my prayers


    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    April 21, 2020- another broken rod surgery

  11. #491
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,607
    Quote Originally Posted by mabeckoff View Post
    You are such a inspiration to us all here.

    You are in my prayers


    Melissa
    Thanks to everyone for your support. Melissa, I wish that I could inspire myself.
    Susan
    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

  12. #492
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,607
    Quote Originally Posted by rohrer01 View Post
    Susan, if it makes you feel any better, I look like Frankenstein when I walk, too. People stare... I'm not used to it and am embarrassed to go in public. Some people just smile a pitiful smile. I've always tried to be aware of how handicapped people feel, especially since my dad. But you never really know until you wear those shoes, and mine get bigger every day. :-(

    I know that with my grandsons cut on the finger, they thought both nerves and the tendon were cut. They told us he had to have surgery within 10 days of the injury or the surgery wouldn't work. I'm not sure if it's the same for spinal cord injuries. Work on getting well. But it wouldn't hurt to hire a lawyer to do the worrying of the other stuff for you. He/she can collect the data while you work on healing.

    Best wishes and hopefully you'll at least be walking with a walker by the 30th.

    (((HUGS)))
    Roarer, thanks for sharing your similarity in walking with me. I imagine that my postings scare some people wondering if their screws will become loose and they might also suffer a SCI. I remember with morbid curiosity how I read and reread the postings of forum participants that had bad outcomes somehow trying to decrease my chances of having a bad outcome. I may be the worst nightmare of some of the forum participants. Susan
    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

  13. #493
    Join Date
    May 2009
    Posts
    3,729
    hi susan
    no, back then i did not need CPR....i needed immediate pressurized oxygen on my face....and a triple IV line for blood transfusion, antibiotic and something to take the fluid out of my lungs....an IV steroid i think....
    ...just trying to say that a CODE BLUE can be for any immediate danger to the patient's life...that was what i was told by the hospital staff who saved my life...

    i am hoping and praying that you can come back from this injury
    that i am hoping is a temporary injury....the shock of it happening so far after the operation by Dr Hu must be hard to wrap your mind
    around....
    i think a lawyer might not be a bad thing...but only if he/she will handle everything and not be a bother to you....
    you need all your energy directed toward healing and i hope the
    anger helps motivate you to try every day to get up out of bed....
    i cannot imagine what it is like right now for you...
    only pray that it changes for the better....even if by inches every
    day....as long as the changes are in the right direction....

    best to you always...
    jess...and Sparky

  14. #494
    Join Date
    Dec 2012
    Posts
    30
    I hope you at least consider posting, perhpas anonymously, about your doctors and hospital on Yelp. It would help others and also maybe allow you to feel that you had some voice in all this as well. I always post about all my doctors and facilities. It helps me to read the good and the bad from others so I know what to watch out for. Until Yelp, patients did not have a voice. Now we do! Best of luck to you.

  15. #495
    Join Date
    Jul 2014
    Posts
    28
    Best of luck to you. I am jealous of you in that you have made the decision. I am in pain every day but too scared of the pedicle subtraction osteotomy revision surgery to have it. I wish I could talk to someone who ahs actually had it. That would help me a lot. Cause the internet can only go so far. A real person goes a long ways. I wish you the best.

    Sheila

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