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Central cord syndrome

Has anyone experienced this ? The more we learn about my symptoms and more digging the doctors are doing it is starting to be clear I had an injury to the central cord in 2011. My degenerated neck and the headlock, wrestling that resulted in a hyperextension is likely to have pinched my cord. Central cord is also known as inverse paraplegia, which mean your arms may be paralyzed and yet the legs are fine. That is exactly what happened to me for that short moment a couple hours after the injury , which is believed to be delayed and the swelling / spinal shock caused that. It was minor since i regained use of arms shortly after , but went on to confuse doctors for 3 plus years. The autonomic stuff is believed to be the result of this. The tremors, the inability to deal with cold, the progression of neurological problems and pain, spacticity, axiety for first time in life all are common with this incomplete injury as I have met several that had it on another forum. Some from injury , some from spine surgury or herniations left to long. Reading about it is a light bulb for me and it fits to a tee hearing their stories. The crazy thing is your MRI may be clear, my neuromuscular specialist says if she showed you an MRI of one of her patients you would say thats a great spine and then she would wheel her in because she is paralyzed ,and common with spinal cord injuries no two are same. I have seen progress in many areas just with time, but also worsening in the neuropathic pain and inability to deal with temperature regulation as the injury has rewired portions of my body, breezes cause burning pain in arm. Bladder and ED still haunt me, but have seen some improvement. The small fiber neurpathy is still a mystery, the belief is it to developed with the autonomic after injury, but usually symetrical and mine is not, if you cut me in half my left side is great.
I wanted to share my updates so that hopefully some person can avoid the years I spent tossed between specialist and specialist and it definitly relates to the spine. I have a great team now of doctors and PT, and its crazy I tell them then same symptoms I told for 3 years and they know immediatly what occured based off their training and experience. All it took was finding right doctor for me. I am sad that my injury occured after I had worked to graduate but thankful because many with this do not regain use of arms. The more I understand the more I can be a little thankful. I am excited about many of the treatments ahead, steroid infusions, rewiring of autonomic system, visiting the PT place that brought that specializes in stroke and spinal cord injury who rehabilitated congress woman Gabriel Gifford after gunshot wound.
Keep searching , you believing in what you feel means everything, then finding the right doctor is the key.
Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.


  • SavageSavage United StatesPosts: 5,476
    Prior to your very clear explanations, I've never heard of such a thing.

    And always good reminder to continue searching for relief, at least understanding of symptoms and to keep searching!

    It's so good you found great team with understanding your situation!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • itsautonomicitsautonomic LouisianaPosts: 1,816
    I had never heard of it either before I went to the teaching hospital and they told me I had to have had a spinal cord injury. It has progressed in understanding from there with my team of drs. Of course with spinal cord injury early intervention is key, but when not diagnosed for years it's a harder road to recover. The steroid infusion I'm doing now should have been done immediately after injury stop swelling. I'm beginning to do sensory retraining at PT place that also deals with autism and learning some amazing things about the CNS ( central nervous system) from them. Many autistic kids have autonomic/ nervous system malfunction can't stop moving because they have lost propriception , where they are in space, so if they don't move their mind is getting no feedback so they move and run I to things to know where they are. I lost a degree of propriception early on , I'd have to look at my legs when walking cause couldn't sense where they were. It's very interesting.
    Just to expand how important it is to be an advocate for yourself ( fine line in driving drs crazy :). I was running 101 fever other day and I noticed all my burning was gone in right side. I didn't want to call my dr and ask her cause of the past drs telling me my symptoms were in my head so I heaitated but the engineer in me had to understand and I hve full trust and compassion from my dr she would never say it's in my head . So I sent her message in my portal. She called me the next day and said I am so glad you mention that and it's very astute observation and went on to explain the reason for it, and it led to me saying I feel better after exercise and taking Viagra oddly enough. Well there are reasons, I have a vasodilation and vasoconstriction problem with blood vessels , we knew this from nerve damage, but all those things that I felt better increase vasodilation short term and I'm getting blood to damaged areas hence feel better. She said they test nerve damaged patients and actually in the very short term after exercise their nerve conduction increases by 20 percent but short lived.
    So we are looking for things in my treatment plan to work with those observations of when I feel better , looking for medicines and such. I just can't explain what having a dr who you trust and trusts you can do . So many of my past drs I would have kept that info to myself out of fear they would make me feel crazy .
    There is a reason for almost everything that malfunctions in your body, you just have to find and understand the mechanism behind it. It's been the most terrible 3 years I could have imagined but I learned a lot and it's reinforced so much of what I've believed I right/wrong with health field.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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