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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Kelsey Mohring | @kelseydm | May 26, 2016

Hi @gjs411. Welcome to Connect! I'm so sorry that happened to you and that you are feeling beat down by the search for answers. But i'm glad you found our community and hope you find support here.

I can't answer some of the specifics of this question through this correspondence and without a doctor's input, but if you wanted to look at getting a second opinion at Mayo Clinic just contact the appointment office here: http://mayocl.in/1mtmR63.

In the meantime, here is some information from Mayo Clinic about nerve avulsion and brachial plexus: http://www.mayoclinic.org/diseases-conditions/brachial-plexus-injury/diagnosis-treatment/treatment/txc-20127386. Also here are a few additional Connect threads you may be interested in reading: https://connect.mayoclinic.org/discussion/c-5-palsybrachial-plexus-injury-7-month-ago-had-c-3-4/ and https://connect.mayoclinic.org/discussion/i-had-an-injury-where-my-arm-was-caught-under-a-100/.

Also, i'm tagging @vmitz, @susanacj, @bron, @spineaz, @paradiserealm and @Daniel_Munday who have all posted about this topic and may be able to provide some insights and support.

Have you found any of the therapies you have tried have made any kind of a difference? Have you completed the brachial plexus study yet? I'd be interested to hear the results. Take care!

jms7 | @jms7 | May 27, 2016

I am praying for you BIG TIME. I am so sorry for the awful pain you have. God will work miracles for you.

deefl | @deefl | May 27, 2016

Dear friend:
After reading all that has happened to you and your on going pain, I feel guilty for complaining about anything I have.
I don't have any answers to your situation, but some times just knowing others care helps some what.
I know that words are of little consolation, but maybe if enough people hear about what happened to you due to the carelessness of
someone who was drunk, maybe the laws will strengthen and more people will be saved from the fate you have had to endure.
I am amazed at your courage and hope that you find relief soon. DeeFl

Kay | @irvkay312 | May 27, 2016

Hi, With no experience or positive knowledge on this matter, the element of pain has affected me throughout my life. I'd seek a reputable and understanding Neurologist to evaluate the basic control centers that give you these problems. From that point you could have a team work on mental and physical or other forms of rehabilitation to see if any of them can remove any or some of the problems. Seek removal of pain (pain control) and mental stability for mind control. Sincerely, Kay

susanacj | @susanacj | May 27, 2016

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.