Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

New Member Introduction

CoffmanKACCoffmanKA Posts: 3
edited 12/12/2015 - 4:10 AM in New Member Introductions
Hello, everyone. I am happy to have found this forum. Sometimes it is a great thing to find others who potentially understand what you are experiencing/going through.

I have chronic severe neck pain. I believe that the issues are related to a car wreck (1988) that I had many years ago, where someone smashed into my car in an intersection, and the force of the impact was so strong, that I knocked the driver side window out with my head.
I had a C-Scan done at that time on my head, but they didn't do a scan of my neck (unfortunately).
Within the next few years, I began to have strange symptoms, that eventually were diagnosed as MS. (1991-1993)
An MRI revealed the lesions I had in cerebral cortex, but specifically, in my neck.
I lost the feeling completely on my left side (scalp, left arm, torso). At the same time, it was determined that my neck was in very bad shape, and surgery was offered to fix that (which I declined at that time, because I was in fear of setting of more M.S. exacerbations)
I was living in Fort Worth, Texas, as that time. Under a lot of personal stress (small kids, and a failing marriage).
Bad smog, which caused unbelievable hay fever, and constant allergies that interfered with sleep, and for which I had lots of cortozone shots to control.
I mention all of the above, because I have always felt that there was a connection between all of these things.
I believe that the car wreck set off a chain of events that eventually resulted in all of the problems I've just described (and I found medical studies that seemed to substantiate what I am saying. It was a 'repeatable' scenerio that others who had suffered different neck accidents (e.g.: skiing, diving, car wrecks) went on to experience a similar progression. The studies I mention, involved Rhesus monkeys, and they DUPLICATED the same symptoms, after trauma to the cervical spine.
Since that time, I was treated for years for M.S., and experienced symptoms ranging from 'dizzy spells, intense vertigo, numbness and tingling, and weakness.
After moving to Portland, Oregon (1999) (remarrying), the M.S. exacerbations began to decrease in frequency, and have been relatively quiet (no flares) for several years now.
This said, my neck continued to become an increasing issue, with intense bouts of neck pain that would come and go, and for which I sought treatment/relief for for a very long period of time. The only thing that would ever make any difference, was the treatment from an extremely good chiropractor, and massage therapy (which doesn't last, but helped with severe knotting of muscles). Eventually, this stopped working too.
I began taking oxycodone for pain, in 2012.
(as an aside, I was also treated for left-side breast cancer, 4 surgeries, and radiation, between 2011-2012
I had surgery in May of 2014, and had two disk fusions using a newer technique, (ROI-C) cervical cages, at C3-C4, and C4-C5.
I literally had a complete change of curvature of my spine, from an 'S' to a 'C' (the before and after pics, are fairly dramatic)
Unfortunately, within two days of coming home from the hospital, I began to develop frozen shoulder (all of my pain is mostly right-sided, by the way.) The pain was almost unbearable. Eventually it became obvious to me that not only was my pain not improved, it was worse.
So I had yet another surgery in Dec of 2014, this time, posterior. The surgeon checked for any issues in the root canals exiting from the levels that I had surgery at. He noted that they were indeed fairly tight thru the facet joint exit point, and he removed some of the bone at that level.
Since then, I have been fighting relentless, chronic pain, that some days, feels so unbearable, that my mind takes me to places it definitely shouldn't. I have been back to the surgeon, and have seen another surgeon (same group) for a consult.
The answers weren't reassuring. Basically, I felt that the second opinion was a 'SWAG', when a suggestion was made that it could be M.S. related.
The only other diagnostic test that I had, was an EMG, and that showed 'old' long existing nerve damage, left side.
Taking 325/10 Oxycodone 4 times a day (it's not nearly enough to eliminate pain, but it does at least knock it back some)
Also 25M Fentinyl patches, & 600M Neurontin.
I am at my wit's end. I have had some difficulty in the last year, with work (I am a Bus. Systems Analyst). Computer work is probably not the best career I could have, with this condition. That said, what could I possibly do alternatively? On the verge of pursuing disability, which is difficult to get, and bothers me to my core, to have to consider.
I don't know what to do. Out of ideas.
Thank you so much for letting me tell my story, in this forum.




  • SavageSavage United StatesPosts: 5,427
    Welcome to Spine-Health
    Please click on link for helpful information!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • Hey KC.... really feel for you !! I had a 7 level fusion 2009. So are you saying your pain is worse since the surgeon opened up the joint more ? Does that refer the vertebrae ? One of mine was setting on a root nerve (excruciating ) which sounds like what you are talking about. I hope you keep going until you find a surgeon able to figure this out. That's what finally ended my pain train in that situation. Interestingly enough, I continued to have pain down the rt side of my neck and at the back corner of my shoulder blade (Nothing compared to before fusion, pain none the less though). I just had rotator cuff surgery which included removing a piece of my clavicle ( among 4 other issues fixed). I am now rid of the neck and back pain. I had the surgery obviously because of severe shoulder pain.... low and behold it fixed the neck also ?? I'm telling you this because there is hope for you.... keep going till you get "fixed". I know it's hard, depressing and exhausting but once you find the right answers and surgeries you won't regret the journey it took to get there. Sending you hope and healing vibes from Austin.

  • CoffmanKACCoffmanKA Posts: 3
    edited 12/14/2015 - 6:56 AM
    Oh my goodness, bless your heart. Yes, it helps to hear that you had a similar circumstance, and eventually got help. I am so frustrated by my situation, because it has truly changed my entire life, and for the first time, I find that my professional work life has been extremely challenged by my situation. I've had 4 jobs this year. I simply can't work through the pain like I used to (as I described above, I worked through some extremely challenging and serious situations). It has changed my personality, (depression) and presented quite a challenge to my family, especially my poor husband. I have to REMIND myself, that I am NOT a slacker. That I have hung in there through so much, and managed to raise 4 kids. (Enough of pity party)
    You gave me HOPE that there might actually be something out there somewhere that might help. I spent the weekend pouring over the investigational studies that are going on, in hopes of finding one that I could participate in, that might help. I have a limited group of surgeons at Kaiser. I'm not saying that they haven't tried to help, they have, but I am still in SO much pain. Everything in my being shouts that something is NOT RIGHT in there. It feels like my body is either not accepting the new devices in my neck, or they are the wrong size, or they are positioned incorrectly. That is the sensation that I live with every day. Movement, especially when I stretch my head in one direction, is SO painful. It shoots pain down my arm when I do it. I can place my finger on the exact beginning of the pain (which is on the right side of my neck (I accidentally said it was my 'left' side in 1st post..I meant 'right' side) It starts two inches below my hairline. When I push on it, it is excruciating! It runs down into my shoulder. My muscles are like rocks on that side. My right shoulder is painful all the time. Its a catch 22 situation. If I drop my shoulders...that hurts my neck VERY much. If I raise my shoulders, that hurts my right shoulder! So there is literally NO position I can be in that doesn't hurt. If I am sitting or standing, I am in instant pain. Laying down, is much better, immediate relief. Also..sometimes I have a sensation like its harder to swallow. If I could find another opinion, or surgeon that would take my case, who felt that they could help, I'd pack my bags immediately!
    The devices I have are 'newer' (ROI-C) I have a 'Before and After' picture of my scans, that show how much the shape of my neck was changed.

Sign In or Register to comment.