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Thread: Parsonage Turner Syndrome

  1. #1
    Join Date
    May 2010
    Thornton, CO

    Parsonage Turner Syndrome

    Please read my bio or signature to get up to date. It is a long, agonizing story. I still have pain and pressure in my lower spine and if I try to walk to far (through WalMart or Target) my legs go numb. My ortho doc said there is nothing left he can do for me. I am fused from T4 to S1 and after all my infections, surgery is out of the question. We went and bought a wheelchair recently. My favorite sport - shopping - is now a chore and there is no pleasure.

    The begining of March, I started with SEVERE pain in my shoulder. My ortho doc though I might have an infection and sent me to the ER. After a biopsy, MRI and EMG he told me I have Parsonage Turner syndrome. I am in week 2 of PT, my arm is weak and it HURTS! I can handle muscle pain but nerve pain is the worst. I am starting to see a pain management doc. She prescribed Cymbalta 30 mg twice a day. She said it helps with the nerve pain and might help me sleep. She said she will add another med when I see her in 3 weeks. I still take gabapentin 600 mg twice a day from the latest spinal fusion. From info on the internet and from the doc, I am in for a long recovery.

    My husband and boys are getting tired of not having their mom. I sit in my bed most days. I rarely cook or do any cleaning. Right now the future looks bleak.

    Has anybody else experienced this???

    Thanks for all the support.

    11/1976 15th B-day
    Fusion with Harrington Rod, Milw, WI
    T4 to L4
    Pre-Surgery: 76 & 80
    Post-Surgery: 18 & 21

    5/2010 48 yrs old, Thornton, CO
    Flat Back, severe arthritis on bottom, severe pain & can barely walk

    7/13/2010 surgery - anterior
    7/27/2010 surgery - posterior
    8/30/2010 infection in abdomen surgery - 5 in hole
    10/28/2010 infection surgery - bigger hole
    11/03/2010 more infection surgery (18 cm by 14 cm hole), 20 lbs of flesch & tissue removed & wound vac attached

  2. #2
    Join Date
    Sep 2003
    Northern California
    Hi Barb...

    I'm so sorry about all you're going through. It must be torture.

    Another thing to check in to is Complex Regional Pain Syndrome (formerly known as Reflex Sympathetic Dystrophy).

    Hope the Cymbalta helps.

    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

  3. #3
    Join Date
    May 2008
    long island, ny
    Hi Barb, I have not experienced what you are going through, just wanted to say be strong as you can with physical therapy, hopefully that will help with some of the pain, along with the medication. Try to keep strong!
    Dolores A
    June 4, 2009 Anterior L3 - S1
    June 8, 2009 Posterior T4 - Pelvis
    Mark Agulnick, MD FAAOS
    NY Spine & Scoliosis Center

  4. #4
    Join Date
    May 2010
    Indianapolis area
    Hi Barb,

    I'm sorry to hear about all you're going through. How is treatment for the infection going?

    Thinking of you,
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

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