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

  1. #706
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Thank you all for your kind words. I find my journey through life challenging, yet I have no choice but to keep trying to get into the mainstream of life. My brother said that he thought that I was "so calm" when he saw me during my hospitalization for evaluation of my paraplegia. He did not see me when I woke up at 0700 to the phlebotomist wanting to draw my blood when I discovered that neither of my legs moved at all. I became hysterical crying and sobbing in distress that things had deteriorated to this point before the eyes of the many doctors that somehow could not figure out what was happening. How could so many so intelligent people not be able to figure this out? I remember grabbing the hand of one of the doctors and asking him to come back because, "We need to figure this out!". My son remembers me in the first nursing home as my paralysis was not improving saying that we would somehow, "make this work", that we would figure out what to do to help me walk.

    And now, a year later, I am walking some with crutches and using the wheelchair at other times. The tightness around my abdomen, my crutches, leg weakness, I could go on an on are constant reminders of what was as well as what I still need to do to get into the mainstream of life. I try not to dwell on the "shoulda, coulda, woulda" which would be an easy retreat for me, but not useful for moving forward. I have visited there over and over again in the past year recreating possible scenarios and possible interventions with more favorable outcomes.

    The past 2 weeks and this week are difficult for me as I am on the one year anniversary of an ill-fated month from 24 July to 20 August. I visited my primary MD last week for my annual Medicare wellness visit, and I must admit a little PTSD in the clinic as I relived my ill-fated entry into 2 weeks of spinal cord injury. I find myself looking at the date on my watch and wanting to go forward to 20 August when I had emergency surgery with Dr. Hiratzka and then began my journey through rehab into my regaining some of my life that I have lost. There is a lot more of life for me to grab and embrace.

    Susan
    Last edited by susancook; 08-10-2015 at 01:44 AM.
    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 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at 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 + prayer

  2. #707
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    You are one remarkable lady. I can only imagine what the anniversary date brings to your well being. Hopefully the date will make a great improvement this year. Take care my friend
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    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

  3. #708
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    I think most of us can't even imagine the terror of not being able to move our legs. I hope you eventually start to forget those moments.

    ---Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  4. #709
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Quote Originally Posted by LindaRacine View Post
    I think most of us can't even imagine the terror of not being able to move our legs. I hope you eventually start to forget those moments.

    ---Linda
    Fortunately, paraplegia from instrumentation problems/loose screws is quite rare. While the hours of paralysis were terrifying, the most frustrating/scary part was the inability of medical persons to find the reason for the abrupt change.

    Forget? I will never forget those hours and time spent in the hospital and nursing home last summer. Yes, the memory is fading as I progressively gain some strength and ability to ambulate with crutches.

    Susan
    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 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at 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 + prayer

  5. #710
    Join Date
    Aug 2015
    Posts
    27
    Hi Susan, I just read this entire thread and want to tell you how sorry I am for all you have been through. I thought I read on another thread you have a broken iliac screw. I hope I got this right. If I do and you do have a broken screw, did they find the cause and are they going to remove it? I am so happy you shared your journey with us. I appreciate the honesty and feel this is the kind of thing people need to read when researching if they should have surgery. I think it's pretty clear, we will never be perfect! A revision may help one symptom, but can cause further problems in other area. We all have scoliosis and unless we have had our first surgery in the last few years with the current updated rods and we are under 30, we are all going to be imperfect for life. It's not logical to believe we will come out like a new person. I just wish I could give you a great big hug Scolii sister. You are my true hero.

  6. #711
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Quote Originally Posted by Jamie1955 View Post
    Hi Susan, I just read this entire thread and want to tell you how sorry I am for all you have been through. I thought I read on another thread you have a broken iliac screw. I hope I got this right. If I do and you do have a broken screw, did they find the cause and are they going to remove it? I am so happy you shared your journey with us. I appreciate the honesty and feel this is the kind of thing people need to read when researching if they should have surgery. I think it's pretty clear, we will never be perfect! A revision may help one symptom, but can cause further problems in other area. We all have scoliosis and unless we have had our first surgery in the last few years with the current updated rods and we are under 30, we are all going to be imperfect for life. It's not logical to believe we will come out like a new person. I just wish I could give you a great big hug Scolii sister. You are my true hero.
    Jamie: You are very sweet to call me your hero, but I am just a scoliosis/degenerative disc surgery survivor like you. My usual style in life is to be fairly transparent and self-disclosing. I am happy that you found that my journey had helpful information. Yes, I did have a broken pelvic anchor, but Dr. Hart says that it probably is not significant since so far, I do not appear to have any problems with it.

    When I had my spinal cord injury, I thought that I was everyone's biggest nightmare. Yes, it is a very rare occurrence, fortunately....but so many others on the forum have other problems that have imposed other limitations on their lives. I remember saying to Irina that I was glad that we were not on the forum of people that had a second surgery.....and then, it happened and I am there!

    I am now dealing with sacral "tightening" that increases when I walk with crutches. I had an SI joint injection last week which did not help so far. Bummer. My Pain Management doctor, Dr. Grace Chen said that she had, "other procedures to do if this one does not work". Hmmmmm...........

    Take care, Susan
    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 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at 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 + prayer

  7. #712
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Susan,

    I hope that Life starts getting better for you

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  8. #713
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    I had a replacement of my broken Inter-Stim generator wire [R buttocks, ??? TMI] yesterday under conscious sedation. In case you have not read the volumes before this, the I-S is implanted in the buttocks and a wire is inserted in S3 space. It is supposed to help with incontinence which occurred after my spinal cord injury last summer.

    Here's hoping that I do not break anything else!

    Susan
    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 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at 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 + prayer

  9. #714
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Hope it helps
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  10. #715
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Praying that this resolves that problem and that YES, you do not break anything else! Love and hugs, Susie
    66 and still heartbroken...
    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
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  11. #716
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Hi Susan,I hope all went well. You are in my prayers. It has been a challenging year for you. I am sending gentle hugs
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    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

  12. #717
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275
    Hi Susan!
    Sending prayers for NO more breaks! Think of you, often.
    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!

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