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gjs411
@gjs411

Posts: 9
Joined: May 26, 2016

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

Posted by @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.

REPLY

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!

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

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

Liked by fastfay

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

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.

Liked by jms7, fastfay

@jms7

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

Jump to this post

You are very kind. Thank you for thinking of me!

Liked by jms7

@kelseydm

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!

Jump to this post

Thank you so much for answering me and providing information. I still need to schedule the MRI. I have started to twice and did not finish. I questioned the poor techs to death trying to find an alternative. they are so very nice. Honestly, I have been freaking myself out a bit with claustrophobia concerns. I have talked myself through MRI’s before but they confirmed I will have to wear the “Hannibal Lector” mask as well on top of it. darn it all. I have tried acupuncture, traction, physical therapy, occupational therapy, yoga, meditation, stretching everything under the sun. Massage and water therapy were my saving grace. I would do my favorite therapy exercises (including creating my own) in the salted, heated pool and that helped the most (until I had to drive home). I ultimately bought a tuff pool, attached a salt water pump (that was a little too big for the unit so it sent circulated the water like a jacuzzi) and added a heater (and 220 electricity) in my garage. I also got help adding a dehumidifier and took other steps to protect against humidity. I would tie myself to the ladder to sleep for a while until I was able to start taking ambien at night (which actually helped to quiet the nerve pain some and knocked me out so I could sleep). I move items around using my walker and changed my heavy dishes to lightweight and am lucky enough to have someone help me each week with housework (that I pay). It is nice to talk to people that understand. thank you again and I will let you know what happens. (if I live through the mri) 🙂

Liked by jms7

@deefl

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

Jump to this post

Your kindness is very appreciated. I am probably the same way you are though too. Having been in and worked for the military for close to 30 years, I have learned to appreciate everything that I am surrounded by and the good people of our country (and the world!) and everything we have together. Honestly, I feel as though I need to somehow help others (once I get to the point that I am able) so that maybe they won’t have to go through the same issues. I am a journalist by trade and have a story to tell… Thank you for your kindness.

Liked by jms7

@irvkay312

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

Jump to this post

Thank you Kay. That is exactly what I have been trying to do. I have stymied a few along the way and most tell me there is nothing that can be done. I have to live with it. I just can’t accept that though and keep asking…Peace of mind is always my goal as well. Best to you and wishing for good health to you!

Liked by jms7

@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.

Jump to this post

Thank you for replying Susan. How did they find the avulsion? what kind of test? was it just an MRI or was it a specialized myleogram or neurography? was your pain localized or did it affect the whole body as mine does now? My theory is that if I had caught it sooner, maybe the nerve damage wouldn’t have worsened so that it now affects all of my nervous system. It took me years to realize that I am sensitive to wireless and cell phones and modems and other signals. That is another story but if I am able to stay away from wireless and cell phones then I am not burned, shocked, feel faint immediately and do not keep the horrible headaches that comes with it. I am not sure if anyone else has identified this in their life but I am finding all kinds of credible studies on the topic and countries around the world are legislating to protect their citizens (making wireless against the law in child care in Israel, Russia and France for example) here is one link explaining some steps they are taking http://www.ewg.org/research/cellphoneradiation/executivesummary
Meditation is great! wishing you good health! Best to you as well Kay!

Liked by 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. : )

@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.

Jump to this post

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.

Susana

@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. : )

Jump to this post

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!

Liked by jms7

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!

@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!

Jump to this post

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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