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  • I'm new here, C5 Incomplete

    It took me a while to get enough strength to type here's my story.

    My injury level is C5 incomplete ASIA C

    I have a genetic disorder called Neurofibromatosis.

    Wikipedia's Artical

    (commonly abbreviated NF) is a genetically-inherited disorder in which the nerve tissue grows tumors (i.e., neurofibromas) that may be harmless or may cause serious damage by compressing nerves and other tissues. The disorder affects all neural crest cells (Schwann cells, melanocytes, endoneurial fibroblasts). Cellular elements from these cell types proliferate excessively throughout the body forming tumors and the melanocytes function abnormally resulting in disordered skin pigmentation. The tumors may cause bumps under the skin, colored spots, skeletal problems, pressure on spinal nerve roots, and other neurological problems.

    Neurofibromatosis is autosomal dominant, which means that it affects males and females equally and is dominant (only one copy of the affected gene is needed to get the disorder). Therefore, if only one parent has neurofibromatosis, his or her children have a 50% chance of developing the condition as well. The severity in affected individuals, however, can vary (this is called variable expressivity). Moreover, in around half of cases there is no other affected family member because a new mutation has occurred.

    I have type 1,

    Neurofibromatosis type 1

    Neurofibromatosis type 1 - mutation of neurofibromin chromosome 17q11.2. The diagnosis of NF1 is made if any two of the following seven criteria are met:

    * Two or more neurofibromas on the skin or under the skin or one plexiform neurofibroma (a large cluster of tumors involving multiple nerves); Neurofibromas are the subcutaneous bumps that are characteristic of the disease and increase in number with age.
    * Freckling of the groin or the axilla (arm pit).
    * Café au lait spots (pigmented, most often a shade of brown, smooth edges(coast of California)[2] birthmarks). Six or more measuring 5 mm in greatest diameter in prepubertal individuals and over 15 mm in greatest diameter in postpubertal individuals
    * Skeletal abnormalities, such as sphenoid dysplasia or thinning of the cortex of the long bones of the body (i.e. bones of the leg, potentially resulting in bowing of the legs)
    * Lisch nodules (hamartomas of iris), freckling in the iris.
    * Tumors on the optic nerve, also known as an optic glioma

    Around mid June of last year my body very slowly started deteriorating first my hands and then my legs. I went to the ER where they ran lots of tests and an M.R.I. showed the tumors compressing on my spinal cord at C5.
    The date of my surgery date was Oct. 2nd 2009. I had to get a Cervical Laminectomy to relieve the pressure on my spinal cord and the surgeon had to cut the tumors off my spinal cord.

    The complications of my surgery caused my injury. I have a good prognosis but it's going to take a while. I have limited use of my right hand, my left hand is slow but it's trying to come along. My left leg is stronger than my right leg. I can't walk yet but I'm close to doing so. I still have a lot of neuropathic pain and spasticity.

    I'm getting extensive physical and occupational therapy in outpatient.
    Voluntary control of bladder, bowels starting to return.
    Injured October 2nd, 2009. C5 incomplete ASIA C
    C2-C3 fusion, C4, C5, C6 and C7 laminectomy.
    And after another operation on February 14th 2014, I am now C1 to T1 incomplete ASIA C, with C5 incomplete neurological function at ASIA C.
    C1 foraminotomy, C1, C2, C3 laminectomy, scar tissue removal from C3 to C7, nerve root decompression of C7 and C8 and a Cervical Re-fusion. All due to a gradually worsening genetic disorder that I have and the other collateral complications that comes along with it.

  • #2
    Welcome Randy, it's great that you've found your way to this site. Sounds like you have a comprehensive rehab plan, that's so important. I wish you the very best in your recovery process.
    MS with cervical and thoracic cord lesions

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    • #3
      Hi Randy,
      Welcome to Care Cure Community. Glad to have you here.
      I did a search on this website for Neurofibromatosis. If you haven't already, you might want to use the search feature for this website and find what has been written and discussed here about this disorder.

      Looking forward to hearing more from you about your progress.

      All the best,
      GJ

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      • #4
        Hi Randy.

        Comment


        • #5
          Hi Randy,
          I had a cervical spinal cord tumor removed from the base of my brain to C-5, 17 years ago. It did not migrate or grow back.
          I hope that is good news for you.
          C3,4,5....no deltoids.

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          • #6
            Welcome Randy! Glad that you found us. Keep writing!

            Comment


            • #7
              greetings Randy

              Comment


              • #8
                Originally posted by johntom View Post
                Hi Randy,
                I had a cervical spinal cord tumor removed from the base of my brain to C-5, 17 years ago. It did not migrate or grow back.
                I hope that is good news for you.
                Thanks for the warm welcome every one. Johntom is the strength in both of your hands good? My surgeon told me that I had no nerve damage and that I should get everything back. But I had some post-op. swelling but it all went down now. I am noticing small improvements as time passes.
                Injured October 2nd, 2009. C5 incomplete ASIA C
                C2-C3 fusion, C4, C5, C6 and C7 laminectomy.
                And after another operation on February 14th 2014, I am now C1 to T1 incomplete ASIA C, with C5 incomplete neurological function at ASIA C.
                C1 foraminotomy, C1, C2, C3 laminectomy, scar tissue removal from C3 to C7, nerve root decompression of C7 and C8 and a Cervical Re-fusion. All due to a gradually worsening genetic disorder that I have and the other collateral complications that comes along with it.

                Comment


                • #9
                  PM'd my reply

                  Originally posted by RandySCIC5 View Post
                  Thanks for the warm welcome every one. Johntom is the strength in both of your hands good? My surgeon told me that I had no nerve damage and that I should get everything back. But I had some post-op. swelling but it all went down now. I am noticing small improvements as time passes.
                  Randy,
                  I PM'd my reply.

                  jt
                  C3,4,5....no deltoids.

                  Comment


                  • #10
                    Nice 2 meet u Randy..its gonna get better...

                    Comment


                    • #11
                      Welcome Randy. Sorry you had to find us but glad you're here. All the best in your recovery!

                      Comment


                      • #12
                        Welcome Randy....stay strong I am newly injured 11/5/10 and I have found lots of information and strength, support, and hopefully some new friends also.
                        JeAnNE L1Burst Fracture inc. 11/5/10

                        Live Well--Laugh often

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