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Thread: I'm new and I have been suffering with pain for 8 years (post op)

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  1. #1
    Join Date
    Aug 2012
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    Unhappy I'm new and I have been suffering with pain for 8 years (post op)

    I had Harrington rods and fusions when I was 12, at Syracuse University Hospital. My pain started in my hips when I was 16, I first when to a normal Dr. and they thought it was possibly ovarian cysts and the like so I went through trials with that with no luck. Then I went up to see my orthopedic dr, and he couldn't find anything wrong either, my xrays are perfect. So I went back every year complaining about hip pain, hip pain turned to combination hip and knee pain (right side) when I was about 20. I went back still nothing showed on my xray and every-time I went in I had no evidence of physical pain (go figure) which happens every time I walk into a hospital so no one ever takes me seriously.
    Fast forward, just before my 23rd birthday, the pain has gotten so intense that couldn't even stand to complete my shift and work, I stand for maybe an hour at most then I would be in excruciating pain for the next 8 hrs, then I couldn't lay down when I got home because my knee, hip and back hurt so much that being in anything other than a sitting position was excruciating. even sitting was extremely painful, but it was the most comfortable I could get. I slept sitting most nights, so I left work because of this and being coupled with my social anxiety getting sever to the point I was afraid to leave my house.

    I kept up on some exercises, like the ball, lifting some light weights to try and keep the fat off because I know being heavy puts strain on my back, but that too got to painful to complete. It seemed like every-time I reached a weight goal I was taken 20lbs back because I had to take so much time off because of my pain.

    I went back again and they did xrays again, and nothing showed, I had a choice between physical therapy or an epidural. I chose physical therapy, which was a bad idea because my anxiety was really bad and left after about a month of it. It didn't do anything at all anyways and I was going 3-4 times a week, on top of trying to exercise at home.

    I can't walk for more than 45 minutes now, and I don't really want to go back to hear the same results over and over and no one will help. I applied for disability because (TMI ALERT) I can barely twist far enough to wipe my a**, let alone work and my a** isn't big. They told me in the disability office that I only had 75% of my twisting mobility but I was fine, fine my a**! They denied me disability even though I can't stand to work, it sucks because I am only 24, who would have thought I would have been disabled at 24. NOT ME! I had big plans and I still do and this really gets in my way! I take my dog for a walk and I'm out of commission for the whole day and part of the next.

    This is kind of a post to get things rolling here and to talk to people who might be in my situation.

    What have any of you done to alleviate pain? I feel like nothing works and I often give up hope of ever being pain free.

  2. #2
    Join Date
    Jan 2008
    Location
    NC
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    Hi And welcome. Very glad you posted as others might be dealing with the same thing.

    I hope some adult patients come on here to advise you. I can only suggest that you go to a top revision spine surgeon to finally determine if your pain is due to the fusion or not. It sounds like it could be some type of arthritis completely separate from your fusion but of course I have no idea because I have no training.

    I hope some one here has heard about the type of symptoms you are experiencing and has some idea of if it is at all related to your fusion or not.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
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    Just to add, I don't believe you will ever be able to rule your fusion in or out as the cause of your pain until you go to a top revision guy or at least someone specializing in spine/scoliosis. I don't think any other type of doctor will necessarily be able to help you at this point except maybe an arthritis expert who can rule that in or out.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #4
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    I just read your other post and realized your operation was in 2001. I don't think Harrington rods were still in use then.

    Where does your fusion end? You say you had a double major curve. If it goes below L3 or so, you would be expected to need a revision some day as I understand it but I don't know if your symptoms map to that or something else. Other people here will know.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
    Join Date
    Aug 2012
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    4
    I do have Harrington Rods with a fusion, I don't remember where it starts but I think its either my T1 or T2 and ends near my L1 and the fusions go down to my L4 and the pain in between my L2 and L3, I also have upper back pain around my T5 which is right below-ish were the rod starts. Those spots are also painful to the touch, I jumped off the exam table in my disability physical exam because when she pressed on my spine it was a sharp stabbing pain all the way up to my neck.
    Last edited by SapphireTomoe; 07-01-2013 at 12:46 AM.

  6. #6
    Join Date
    Mar 2010
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    2,755
    Sharon,
    My DIL had her surgery 7 years ago. Her instrumentation looks eerily like Harrington instrumentation. She has the hooks and a couple of cross-bars instead of pedicle screws and a lot of rotation was left after surgery. Maybe the doctor was only trained in the Harrington procedure. She's an older lady.

    Sapphire, I'm sorry to hear that you are in so much pain. I do believe you that you have Harrington's.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  7. #7
    Join Date
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    NC
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    Quote Originally Posted by SapphireTomoe View Post
    I do have Harrington Rods with a fusion, I don't remember where it starts but I think its either my T1 or T2 and ends near my L1 and the fusions go down to my L4 and the pain in between my L2 and L3, I also have upper back pain around my T5 which is right below-ish were the rod starts. Those spots are also painful to the touch, I jumped off the exam table in my disability physical exam because when she pressed on my spine it was a sharp stabbing pain all the way up to my neck.
    Are they just attached at the top and bottom or are there screws and hooks at several levels?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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