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CRPS....anyone have it?

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  • CRPS....anyone have it?

    OK, stop laughing. You think that I left the "A" out of CRPS, right? When my Pain Management MD told me about CRPS as a possible diagnosis, I said to myself, "finally a problem that has a fitting name!" It stands for Complex Regional Pain Syndrome. Anyone with the diagnosis and what has worked or not worked?

    "Spinal Surgery, the gift that keeps on giving".

    Susan, feeling a little bit CRPY today
    Last edited by susancook; 08-02-2017, 03:31 AM. Reason: always a better way to say something
    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
    yes - it is another name for Chronic Pain but more significant because Scoliosis is a complex condition

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    • #3
      Hi Susan, while I wasn't diagnosed with it, the diagnosis I do have (arachnoiditis) has similar symptoms. I'm not sure if CRPS has the neurological symptoms . I think it can be treated similar. Check out my latest thread and Ed posted a pamphlet that describes treatment.
      Last edited by jackieg412; 08-02-2017, 09:30 PM.
      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

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      • #4
        Hi Susan, I have a question about CRPS~~ what are your symptoms? I know pain for sure, but Is it all over your body? You always seem to be able to put a smile on my face , while telling us about a serious condition!!! I have been wondering about you and how you're doing.I guess I know now. (sad face).What does your pain management Dr. suggest for you? I'm sorry you're having to deal with this. Warmly , Linda
        Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
        Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
        This started adult onset scoliosis
        July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
        Oct.20th 2010, extended rods to T4 / did osteotomy at L3
        Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
        May 30th 2013 revision
        May 8th cervicle surgery 2016
        May 31st Dr. Gupta revision 2017

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        • #5
          Linda Luker, who was a participant to the listsrv that predeceased this forum, was diagnosed with Reflex Sympathetic Dystrophy, which was later renamed to CRPS. Typically, there's only one body part involved (e.g., one leg), but in Linda's case, and probably Susan's as well, the spine being the area of trauma causes pain in the entire body. Linda suffered for about 15 years. She could barely move. She spent 95% of her time in bed. Linda died late last year, finally out of pain.
          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

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          • #6
            How old was Linda when she passed. Very sad to hear.

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            • #7
              Originally posted by dailypain View Post
              How old was Linda when she passed. Very sad to hear.
              - - - - - - - - -
              75
              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

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