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Still having phantom pain

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  • Still having phantom pain

    Is it normal to still be have phantom limb pain after over a year post-op? I have nerve pain at my injury site but hte two pains are not the same. My legs "feel warm and swollen". Kind of like they fell asleep. I know there is no way I can actual feel them, I am definitely a complete injury.
    T6 complete since 3/21/2012

  • #2
    you mean your legs are gone? or your spinal cord is completely severed?

    I am an incomlete, and three years after a mole was cut off of my foot, I still at times feel the fresh wound and the pulling stitches.

    After an emg, I feel the shock and stab of it for months.


    I think it is normal, and something not well understood.

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    • #3
      No I still have my legs. Im a complete SCI at T6. Ive just heard phantom pain is suppose to go away after a while but I swear I can feel the "presence" of my legs and its very uncomfortable. A burninhg warm pressure feeling
      T6 complete since 3/21/2012

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      • #4
        I believe you should be talking about your neuropathic pain, or central neuropathic pain. Phantom pain is not associated with SCI; it is something seen in those with amputations, usually of the leg(s).

        (KLD)
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        • #5
          Originally posted by SCI-Nurse View Post
          I believe you should be talking about your neuropathic pain, or central neuropathic pain. Phantom pain is not associated with SCI; it is something seen in those with amputations, usually of the leg(s).

          (KLD)
          KLD, I recall reading of a case from Dr Sergio Canavero in Italy where he performed a procedure on a patient and in the aftermath the patient experienced phantom pain of a third arm that never existed.
          In this report, the authors describe a case in which the patient began to experience a supernumerary phantom arm after she received motor cortex stimulation for central pain. The patient had a history of right thalamocapsular stroke. It is speculated that the motor cortex activation triggered a response in the patient's parietal lobe, precipitating perception of the phantom limb. To the authors' knowledge this is the first reported case of its kind.
          http://www.biomedexperts.com/Abstrac...in_Case_report

          I also recall something Alan posted here that sounded much like phantom pain in the way he described the sensation of his shoulder blades protruding the skin. Perhaps my memory on that is off, if he sees this thread I'm sure he can describe it better.

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          • #6
            Shoulder blades and vertebrae through skin are but one aspect of my central pain syndrome portfolio.
            Alan

            Proofread carefully to see if you any words out.

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            • #7
              I thought the scapula thing was physical. I didn't know you meant it was a feeling. mine roll or slide into a locked position sometimes. it is visibly sticking out, and bumps across some ribs.

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              • #8
                ARRRRRRRRRRRR...I HATE THIS NERVE PAIN
                It hurts in my stomach and right hip to talk and eat, just moving my jaw feels like someone is ripping my gut apart and feels like someone hit my hip with a bat. Came on 7 years after c5 injury. I use to be very active and social, now i'm just a boring mute.
                To add to it I get terrible butt pain for two days in a row and maybe a day off. So bad I cant stand to sit in my chair towards the end of the day. The Crazy thing with that is sometimes I can nap in the morning and it will go away, about 25% of the time, and if I am butt pain free and doze off my butt pain will come back. I need my brain rewired I think.
                DON'T UNDERSTAND HOW DIFF. NERVE PAIN CAN DEVELOP 7 YRS POST INJURY.

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                • #9
                  Thanks for putting a name to what I've been feeling in my left leg recently. It feels swollen and very warm all the time. I thought it was my imagination. Nice to know I'm not going crazy.

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                  • #10
                    Originally posted by jody View Post
                    I thought the scapula thing was physical. I didn't know you meant it was a feeling. mine roll or slide into a locked position sometimes. it is visibly sticking out, and bumps across some ribs.
                    The sensation of bones sticking through my skin is part of my pains list (they don't actually protrude through my skin.) My winged scapulas rubbing and sticking on other bones is physical.
                    Alan

                    Proofread carefully to see if you any words out.

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                    • #11
                      Originally posted by snider7779 View Post
                      ARRRRRRRRRRRR...I HATE THIS NERVE PAIN
                      It hurts in my stomach and right hip to talk and eat, just moving my jaw feels like someone is ripping my gut apart and feels like someone hit my hip with a bat. Came on 7 years after c5 injury. I use to be very active and social, now i'm just a boring mute.
                      To add to it I get terrible butt pain for two days in a row and maybe a day off. So bad I cant stand to sit in my chair towards the end of the day. The Crazy thing with that is sometimes I can nap in the morning and it will go away, about 25% of the time, and if I am butt pain free and doze off my butt pain will come back. I need my brain rewired I think.
                      DON'T UNDERSTAND HOW DIFF. NERVE PAIN CAN DEVELOP 7 YRS POST INJURY.
                      I've got that, too - the extreme abdominal pains which are aggravated by breathing, swallowing, etc. It's all unbelievable, but all too real.
                      Alan

                      Proofread carefully to see if you any words out.

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                      • #12
                        Originally posted by AnnieM View Post
                        Thanks for putting a name to what I've been feeling in my left leg recently. It feels swollen and very warm all the time. I thought it was my imagination. Nice to know I'm not going crazy.
                        you should go see if you have a blood clot.
                        call your gp if your leg is feeling swollen and warm. if it hurts or there is any discoloring like a darker area go to the ER.

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