Have been reading for a few days now and wish I’d found you all before I got into this mess. I’m hoping for any insight at all at this point. So here goes my babble. In 1984 I fell down a ladder, landing directly on my tailbone, on a steel deck. Felt massive electric shock and some tingling in my hands that passed in seconds. Four months later had another shocking episode while stepping off a curb, this time the numbness lasted about twenty minutes along with much neck pain that never did go away until I received a successful anterior discectomy w/fusion by dowel plug from my own hip in 86. First felt pain in left shoulder blade and neck at T4 in 87 after a 12km forced march. It would go away with rest and return only after heavy physical exertion. In 92 it became bad enough to see GP and he diagnosed bone spur and said it was easily removed. At the time I was about to move and felt it wasn’t bad enough to warrant immediate surgery. The pain was controlled with anti-inflammatorys. In 94 it got bad enough, and stayed long enough to see GP again (different city). The Doc could not figure out what I was talking about and I soon found that all record of my “spur” had strangely disappeared off my docs. New GP found nothing from x-ray and I ended up on stronger anti-inflammatorys. In 95 was diagnosed with tinitus w/no immediate cause. I managed the pain right up till 98 when I collapsed at work for no apparent reason (sudden onslaught of extreme hypertension and vertigo). Of course they said I was having a heart attach. Went through every test in the book except for checking me where it hurt. Now, I had brought up the fact of my back and neck pain, but to no avail. During my last meeting with the heart specialist I asked if there could be any correlation between my hypertension and my back pain. I got a resounding “could be, I don't have an answer for it". At least it was something, and back to the GP I went. Got my first look at my first fusion on x-ray and to me (my opinion only) there seemed to be a lot of extra boney growth beyond the original bone. Anyway, I finally got an MRI in late 98 and surgeon would not operate even though the disc at C5-6 was completely ruptured and the guts were pressing my spinal cord up against the wall of my canal. Waited, No,
Complained my way through another year on Codeine, Arthrotec, Diazepam and more pain than I care to mention. Started Pain Management, Neurontin 1200mg daily. GP finally sent me to a Neurologist who did nerve conduction on left arm and found damage in or to my shoulder. I could not persuade him to test my back shoulder blade area where most of the pain was and still is. Another MRI (Mar 2000) that mentioned ostiophyites, stenosis and my cord just flattened up against the canal. I saw the cord and in the film it looked like a crescent moon in the last quarter. May 10th 2000 was in for an Anterior Fusion (bone from bone bank) of C5-6 w/steel plate and screws from C5 to 7. Was pain free for eight weeks w/hard collar when the dreaded shoulder and neck pain returned with a vengeance. From then until now, have tried Glucosamine, neurontin and been thru a number of anti-inflammatorys. As it stands now, I can no longer stomach these drugs due to long term use side effects. More codeine! My new GP (I moved again, took 32 days to find a “family Dr.” Canadian Medical System) sent me to a physical medicine specialist who found (all on the left) bursitis in my shoulder, tendonitis in my elbow and carpal tunnel in my wrist. I found this amazing as I had not really used the arm in a year and aren’t all these ailments attributed to over use. Physio helped all these but made the nerve pain unbearable. Meanwhile the Phys Med recommend a neurosurgeon and it was back to the GP. Oh and note that I have been mostly inactive for the last three years as any activity (sitting, standing, walking and just about anything that requires the use of my arms or neck) increases the pain. Neuro says MRI, and after a nine month wait (Canadian Medical System ) the MRI tech could not get a clear picture as I was moving to much. I never moved a mm (inch). And was calm and relaxed in the machine) . She actually yelled at me to stay still. And I’m sure I never moved a bit (I wonder if the metal plate was doing the moving). She said she got a picture on the lowest setting possible, after three tries. (Can anyone tell me if and how much of a difference this may have on the results?) Went in for results, fearing the worst, and got more than the worst by the surgeon saying “ there’s no impingement or bulging and I can no longer see you as a patient”.
I was stunnnned speechless. He proceeded to show me the film that I found fuzzier and of lower resolution (smaller) than the one prior to my last surgery. To tell you the truth it was all inkblots to me, except for the full side view that showed my neck in the shape of the right side of the letter K, with the entire fusion (C5-7) area as a big black spot with zero detail. I guess this shape is a result of reversing the reverse lordosis, if that makes any sense to anyone, and the spot was called Artefacts in the report. It also made me realise why I’m having so much trouble swallowing with my oesophagus bent over the cruck in my neck. So any and all details in and around the fusion area(where all the pain is) were blocked by Artefacts.
At this time, my symptoms are low-grade headache most of the time, my neck feels like it’s in a vice (pressure w/dull ache that grows thru the day). Within an hour of rising the burning starts in the fusion area and continues to build until I lie down. I have almost constant spasm on one side of my neck or the other (thankfully low doses of diazepam keep them pretty much at bay. Trigger-point to the left of T4 under shoulder blade, nerve pain that radiates out to left shoulder and all the way down the arm. (I am left handed) There is an area on my back that seems to emanate from “the trigger-point” in the shape of a kidney that burns and is hypersensitive (skin wise) to the touch. I equate the pain to a hot poker stuck in my back with the heat going down to my elbow and my hand is always in the fridge. Oh and the guy holding the poker is a real #$@%?&. I can use the arm but tend not to as the pain goes up, the blood pressure goes up and I go down, w/dizziness and vertigo. The arm tingles, or more like a tuning fork, sings all the time. I think it may be the same tune my tinitus is playing. I get chest pain later in the day, everyday. There is two other trigger points on the right but neither are anything compared to the original that started in 87 and occur infrequently without too much pain. As far as I’m concerned my bowels have not worked properly in six years and are getting worse with time (had all the tests there too, w/no results). I wake (when I sleep) feeling beat up most mornings. My normal sleep is about 5 hours w/frequent awakenings. I have to be exhausted in order to fall asleep and is not uncommon to lie in bed for three hours before nodding off. I have noticed some balance problems in the past six months. Not bad but its still there. The better part of my day is spent on my back. I too was an athlete and am now a 150lb string bean and yet my back is nicely ripped. (Could not have made it look this good with weights if I tried) The nervous system is an astounding thing that I believe the doctors don’t really understand.
So I’m asking the experts for any and all insight, comments, suggestions, possible diagnosis, and jokes or just to say hello. Take care all and may your pain go on vacation weather it needs one or not.
Its taken three days to write this, so please don’t expect any quick responses.
PS: I start pain management on thursday, again.