How do I test for longterm (9 years) suspected nerve avulsion in neck?

Posted by gjs411 @gjs411, May 26, 2016

HI there, thank you for helping if you can. I am desperate for help. I was hit by a drunk driver from behind 9 years ago and the seat belt caught me across the neck. I had immediate loss of the use of my left arm, had temporary loss of both legs. the nerve pain went from the top of my head to the bottom of my feet and I was on fire, could not think, could not function (lift anything), my left eye bulged and my left ear pain was horrendous. (horners syndrome in right eye diagnosed years later) I have been a ball of electrical fire since that day, have completed every type of therapy (most to gain use of left arm which took a year to be able to lift but always with terrible pain) , seen way too many doctors and had two major surgeries when my spine collapsed (lost control of bladder and couldn't walk-being forced to retire ultimately from 30 year career). One surgery in the neck. I have said from the beginning that I "broke" a nerve in my neck. I could feel it, I have had MRI's, CT's, seizure EEGs, nerve conduction studies and more. Most nerve studies showed nerve damage but it just showed what it was affecting not where it was. I recently learned from my own research of brachial plexus injuries and that CT myleograms and MR neurographies can "see" nerves coming off spinal cord. My pain doctor is in agreement with me that I probably suffered a nerve evulsion but said it is too late to do anything about it except manage the pain. I become partially paralyzed every day depending on how much I use my left arm and how much movement, standing or sitting upright that I have. I cannot escape the intolerable pain. I finally got a neurologist to agree to give me a brachial plexus study but understand that it is not a neurography, only a regular MRI (just looking in different place). How can I expect to find this nerve evulsion with a regular MRI? Why wouldn't other MRI's have shown it? By the way, I have been tested for stroke many times especially since I feel faint when my central nervous system is overwhelmed and my symptoms worsen. Do you know anyone that has ever heard of a person having a nerve evulsion in the neck area that immediately took out the entire left side and ultimately affected the whole body? I really want to improve. I have living to do and I am barely able to function for more than minutes at a time. I don't know what else it could be and I am tired.

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You are an inspiration. God kept you alive for a reason. Clearly you have a powerful spirit. On this Memorial Day weekend, know that your service is valued and appreciated. Perhaps you are Marine Corps! If I were in your area, I would just come help you with chores, etc. as a friend. : ) Your spirit and your love of being alive will restore you. Semper Fi. : )

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@susanacj

I am sorry about you are going through, you just need to the right doctors and I think Mayo is your answer. I had root avulsion from c5-t1
Surgery to 'repair' and I do have lots of pain. I don't take medicine, but lately I have tried a meditation app called 'OMG I can meditate' it has helped my overall mood and reducing the pain somehow.

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There are ways to find out, didn't even have a chance to get a test because I was 4 month pregnant when I had the accident. They waited only 3 months until I was 7 months pregnant. I had the brachial plexus surgery and they discovered the avulsions. I was in surgery for 12 hours here in Houston. I wasn't able to really go anywhere else, butt I did go once to mayo just to find out if there was anything they could do later. My pain is like a spasm on my arm, it can start from my shoulder, elbow or anywhere on my arm and it travels like fire down to my fingers. I didn't have any other damage in that car accident, thank God. Also, my daughter and I survived the surgery too. She is a healthy13 year old now and was delivered until the 9 month. Don't worry, it seems like a lot to you because you don't know what really is causing all your problems, but God is with you and know you will be in the right hands. <br><br>Susana

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@jms7

You are an inspiration. God kept you alive for a reason. Clearly you have a powerful spirit. On this Memorial Day weekend, know that your service is valued and appreciated. Perhaps you are Marine Corps! If I were in your area, I would just come help you with chores, etc. as a friend. : ) Your spirit and your love of being alive will restore you. Semper Fi. : )

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Semper Fi to you jms and thank you. I am Navy but I worked with Marines my whole career. One big happy family right? haha. crazy Marines Best to you and thanks for your upbeat message!

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I am wondering how you are recovering, I am on a journey with my son for very similar symtoms. Drs have no idea as to a diagnosis for my son. He gets severe muscle spasm and ends up in the hospital for months and weeks at a time. I hope you have recovered and are enjoying your life!

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@cillamac

I am wondering how you are recovering, I am on a journey with my son for very similar symtoms. Drs have no idea as to a diagnosis for my son. He gets severe muscle spasm and ends up in the hospital for months and weeks at a time. I hope you have recovered and are enjoying your life!

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HI there -we think we have it narrowed down to a brachial plexus and facial nerve evulsions plus I have an EMF sensitivity. If your son has similar issues I hate it for him and wonder if he is also now sensitivity to wireless? I will become partially paralyzed every day dependent on movement. The wireless affects me so horribly, I can't escape it I have learned so much about it. http://www.bioinitiative.org/ sending love and healing to your son!! (and you)

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