A Patient's Perspective
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Up C Spine - Is your Head on Straight?
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Home | About Up C Spine | My Story | The Nightmare Begins


For three months following this head injury I felt quite fine. I had remarked to my GP that my neck did not feel quite right, although I had no pain and no restriction. I did however have some crunching noises when moving my head from side to side. The noises appeared to be coming from behind my nose. It was about three months to the day after the football game incident that I started experiencing symptoms. At first they were minor and annoying but then they progressed quite rapidly and became quite frightening.

The following lists the symptoms and other signs that I began to experience. They are listed roughly in order of occurrence although some were concurrent and some would come and go regularly.

  1. A strange pulling sensation to my right shoulder. This was almost like someone was holding me back by the right shoulder. I was being pulled backwards to the right and had trouble maintaining balance. Walking up hills or slopes became a real chore, with gravity having a significant affect on me.

  2. One week later, tinnitus (ear noises) started in my left ear. The sounds appeared to get worse depending on my neck position. Soon after this, tinnitus started in my right ear. At first the sounds were not too loud, however they soon became much louder. I say sound(s) because I seemed to have multiple types of sounds.

  3. A strange buzzing sensation in my head began to affect me when I tried to sleep. If I placed my head to the left on my pillow my whole head would buzz and wake me immediately. This was so weird, that explaining it is somewhat difficult.

  4. My tongue and the left corner of my mouth started to burn.

  5. I started to experience left facial numbness. It progressed and I experienced numbness to my whole left side. On occasions I would wake and be completely numb down my left side, arm, leg, foot and torso. Needless to say this was frightening.

  6. I would experience intermittently, what I can only describe as pressure to the roof of my mouth. You would get the same feeling if you took both your thumbs and put them inside your mouth and pressed firmly up against the roof of your mouth.

  7. On other occasions it would feel like my whole skull was freezing.

  8. I began to experience vision distortions, like sensitivity to light and difficulty seeing especially at dusk. My vision became filled with what are known as floaters.

  9. Breathing difficulties began and intermittently affected me. It would seem that my breathing would just stop randomly, but momentarily. This is nothing like doctors describe as anxiety, which I was accused of having.

  10. My speech was becoming slurred, and I found it difficult to get my tongue around certain phrases. This wasn't a major problem but the fact was I had never experienced this before.

  11. I also experienced what I would call memory lapses. I couldn't remember even the simplest names of things e.g. wheelbarrow, shovel. How come I couldn't remember the name of these things?

  12. Soon I had difficulty swallowing. Even water was a problem, although easier than food.

  13. My arms and legs felt very heavy, like I had concrete dangling from each limb.

  14. I had difficulty coordinating fingers when typing and writing. The computer keyboard was becoming more difficult to handle.

  15. An eye twitch started in my right eye. This would on some days be there all day, and on others only for part of the day. One doctor had delight in telling me he had one and I was to watch his eye, so I could see it happen. As if to make it normal!

  16. I started to get leg twitches and tremors down my left leg. It appeared to be somewhat similar to what I had read about Parkinson's disease. I would stand up and my leg would shake of its own accord. My electronics background makes me think this is overshoot of the electrical impulse to the muscles.

  17. My fingers and toes tingled and periodically I would get pins and needles throughout my hands and feet.

  18. I had clicking sounds from the left area under my skull when moving my head.

  19. I had a sensation of something stuck to the bottom of my left foot. It was like a piece of cardboard was stuck there.

  20. On many occasions, especially after eating, I would experience tingling all over, like I had ants crawling over my body.

  21. I could hear squelching sounds in my right ear when eating. When I put my fingers in my ear canal, I would hear a sound, like you would hear when using a wet sponge or flannel to clean your ears.

  22. I had a feeling of fullness or blockage in the left ear, and experience sounds like crumpling a newspaper near my ear if I moved my jaw.

  23. I experienced ground-moving sensations several times a day. The ground would seem to escape me. Sometimes opening a car door, the whole car seemed to move. I would usually experience some nausea at this time.

  24. Upon visiting an ENT specialist I was told I had left ear hearing loss, although the frequency at which I had trouble hearing was more likely the same frequency as my tinnitus. My left ear was also very sensitive to any loud noises.

  25. I could hear crunching sounds behind my nasal cavity when I moved my neck in a 'NO' action.

  26. My right trapezius muscle, the shoulder part, was now lower (wasted) than my left and the sternocleidomastoid muscle or SCM (main neck muscle) seemed wasted also, as well as the deeper scalene muscles appeared much smaller on the right side of my neck.

  27. This right trapezius muscle was excruciatingly painful during and after eating. The very act of eating now made me quite ill.

  28. I felt light-headed and dizzy on many occasions, especially during and after eating.

  29. My left foot would often feel extremely cold.

  30. My left little toe would go bright red whenever I put my neck in a certain position.

  31. I noticed that I had right head tilt and my chin was rotated to left. I have since found that doctors call this the 'cock robin' position.

  32. I had pain in every thoracic vertebra. My whole back was now painful but mainly around the shoulder blades and at my sacrum.

  33. I began to get knee pain and they would click quite loudly.

  34. I frequently sprained my right ankle.

  35. I had this horrible sensation that my whole body was twisted and that I was walking sideways like a crab.

  36. It was often painful to have any clothing touching my skin.

  37. I had jaw joint noises, squelching and clicking sounds.

  38. My blood pressure dropped to 70/50 lying down but would come back to normal when sitting up. I also experienced horrible sensations whilst lying down. This could be replicated monotonously. No doctors would believe me; one even indicated that low blood pressure was nothing to worry about!

  39. My feet hurt badly and buzzed regularly. They didn't buzz with my heartbeat, but had their own regular pattern. Testing by a doctor by scraping an implement along the bottom of my foot resulted in no discernable response. She thought I was somehow faking the non-response.

I had none of the above symptoms or conditions prior to my head injury. Nobody can make me believe that this is to be expected as part of the normal aging process. Yet that is exactly what I was being told!

In my quest for relief, and to find out what was wrong with me, I saw numerous doctors, dentists, orthopaedic surgeons, neurosurgeons, otologists, neurologists, osteopaths, physiotherapists and otolaryngologists. They ordered brain (many on my insistence!) scans (MRIs,CTs), cervical spine scans (x-rays, CTs, MRIs),TMJ MRIs, blood tests, ECGs, EMGs, ultrasounds (liver, spleen, pancreas, kidneys), doppler carotids - ALL came back clear (apart from some minor disc bulges at C3-4, C4-5 and C5-6) and I was told that there was nothing wrong with me. The responses ranged from "learn to live with it", "you're getting old", "it's in your mind" to "take these" - [being a referral to anti-depressant and anti-inflammatory drugs]. When I now look at those images, subluxations between my skull and atlas and my atlas and axis are very, very evident.

Believe it or not, many of the above symptoms became worse in severity as time went on until I was bedridden. My weight dropped to 60kg (132lbs) from 86kg (190lbs) and my skin turned gray. I started to bleed from the bowel. I now know this was due to the non-steroidal anti-inflammatory drugs (NSAID) the doctors had prescribed. One of these NSAID was Indomethacin. I found out that this drug has been known to cause fatal GI bleeding! As you can see, doctors were absolutely no help whatsoever. Some doctors tried to shorten consultations, telling me I was a nightmare patient and shouldn't be reading x-rays or looking up things on the Internet. This was when I decided to take matters into my own hands. I thought to myself, this is just plain rubbish (stronger words used!) If it were my child who was this ill what would I do?

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