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Over 20 years of neck problems--Need your input please

I am brand new to the forum, but I am hoping someone may have experienced a similiar story to mine. 23 years ago I was involved in a car accident where I was hit from behind at 45mph and sandwiched into the car in front of me. I was in physical therapy for almost a year. There was a small "knot"/lump that developed between my shoulder and base of the neck that was quite painful. You can feel the lump just by running your hand over my skin. The therapist thought it was muscular but couldn't figure out why nothing was working to alleviate the situation. I was sent to an orthopedist doctor who did not figure out what the knot was. From there I was sent to an Osteopath who did not know either. I was in my 20's and in great shape so I finally just figured I could live with a little pain. Over the years that knot has grown significantly. I have terrible neck pain, also pain at the spot of the knot, burning in my chest under my arm and tingling/numbness in the fingers. I have been in physical therapy with 5 different therapists all who end up saying they can feel the problem but aren't sure what it is and why they make it worse with therapy and exercise. They always send me back to the doctor. Over the years I have been sent to arthritis docs, neurosurgeons, orthopedists and so many other docs I have lost track. I have been diagnosed incorrectly so often it could fill a book--muscle spasm, soft tissue injury that would eventually heal, a cracked rib, a tiny fracture of the collar bone, arthritis, a torn ligament in my spine that would heal and the latest fibromyalgia. I have been to so many specialists that eventually I am just phased out of their practice because nothing has worked.

I have had injections in the neck and that hasn't helped. This latest spine doctor said that they previously didn't work because those doctors injected directly straight down into the spine area and she would solve my problem by coming in the side of the neck. No luck there either.

Two years ago they discovered I needed a cervical fusion at c6-7 which I had. That accomplished nothing so now the surgeon wants to do another fusion at c4-5, which I refuse to do until I get an accurate diagnosis concerning the knot.

In my layman's opinion the knot swells and continues to grow. I am again in physical therapy and this therapist has been the most honest saying he isn't sure what it is. He said that it is at a part of the body that doesn't really fall under any specialist and that is the reason for going so many years without an answer. That makes sense because I can't get the doctor's to listen to me that I believe the knot is the source of the problems. The Orthopedists look at bones, the neurosurgeons look at the spine, etc. He said that about 5% of his patients have injuries in a part of the body that is outside the scope of the specialists and most finally give up trying to find an answer due to frustration.

Thank you for taking the time to read this. If you know any stories similiar to mine any opinions would be greatly appreciated.
I wish you all well.



  • First let me say welcome to spine-health. You will find others whom are going through something similar or close to what you are. AS to your issue with the knot, have they filmed your thoriac spine? If the knot is not on the spine itself, it more than likely muscular, and could be a trigger point. I suffer from severe spasms that cause huge knots to swell and need to be injected regularly to help reduce them. It is hard to imagine the doctors you are seeing see the knot but have no explanation as to what it is? Have you reviewed your medical records yourself. Is it possible the doctors have diagnosed and somehow didn't explain it to you? Has the knot been up when you have under gone images? All of do have knot where the t-spine connects to the c-spine. In my case that knot is huge, from under going posterior surgeries and muscle atrophy. So I am not sure if that is the knot you are talking about. That area of my spine does get very painful. Typically the surgeons have issues figuring out when it is a nerve issue, as the nerves can be a little different in each person.

    Have you tried checking out one of the major hospitals in the country like the mayo clinic? That might be another source for you to get opinions. If your uncomfortable about doing another surgery then there is no way I would do it. Keep in mind every time they enter your spine you are building scar tissue, so that could eventually lead to other issues down the road.

    Anyway just thought I would stop by and welcome you to spine-health. I hope some of this helped. Look forward to seeing you around the forums.
  • Hello and welcome to the forum, I feel very bad after reading your post and feeling the pain that you might be going through. Here I would like to ask one question- have been to a surgeon and if yes, then what did he say? Can you not get rid off the lump with surgical intervention? Its just a thought and I don't know if its actually possible or not.
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