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Spinal Cord Disorders Message Board

Spinal Cord Disorders Board Index

I can't believe a doctor would have told you this was in your imagination. You're now seeing a different doctor, I hope? You are definitely not crazy. The symptoms from spinal stenosis are strange, unpredictable, and sometimes almost indescribable.

Due to lack of insurance, my problem became very serious, threatening paralysis, before I was able to get C-spine fusion surgery (I think it was at C4-5 and C5-6, but am not positive because I had so many problems throughout my C-spine.) I had nerve root compression at several levels and severe spinal cord compression in at least one place. My neck had formed many huge bone spurs and I had several bulging disks and absent disk spaces. So I've probably had every symptom you can imagine.

For months (years, really) I thought I was imagining my symptoms because they were so weird. I still don't know if all were related to spinal stenosis. I got random pains that varied in intensity, type, and location. They were sometimes dull, sometimes sharp, sometimes burning, sometimes like an electrical shock. The pain would "jump" from my finger to my ankle to my hip to my shoulder, etc., and might feel like a different type of pain in each place. This would happen even if I was sitting still or laying down. Just random pains with no cause or predictability.

Sometimes the pain was triggered by activity, but often the activity should not have caused any pain. For example, one day I was cranking up the car window when I got such a sudden severe pain in my hand that I thought I had broken a bone. Often my fingertips felt like I was touching hot coals when I tried to type on my keyboard. The bottoms of my feet also hurt sometimes when walking, and the palms of my hands hurt when resting them on the steering wheel of my car.

I became very clumsy and klutzy, often dropping coffee cups and other things. Doing routine activities such as peeling potatoes caused severe pain and cramping in my hands. It eventually became difficult to hold a pen or pencil or any type of small tool such as a screwdriver. It became very difficult to sign my name and impossible to accomplish any fine motor skills such as using a sewing needle.

I had tics, cramps, and muscle jerks all over my body, but they would move from one place to another, just as others are describing. I also developed hand tremors. Usually my right foot dragged behind me when walking, and one day the foot stayed in the car when I got out and I fell on my face. In the mornings I woke up stiff all over, with my legs feeling like they weighed 200 pounds apiece, and sometimes my arms were totally numb from the elbows down, and it would take a couple of hours to regain enough feeling in my hands that I could dress myself in the mornings.

I had constant, intense right arm pain and often had additional sharp pains in my hands, fingers, and wrists, as well as my hips, knees, calves, ankles, feet, and toes. I got weird headaches and for several months I had severe pain in the left side of my face. For another few months, I lost nearly all control of my right hand and my thumb on that hand hurt all the time (a 10 on a scale of 10) and felt cold.

My knee reflexes became so exaggerated that if a doctor tapped me on the knee with his or her rubber hammer, my knee jerk nearly knocked me off the examining table.

But when all of this first started, I did not have any neck pain. It was mainly in my right shoulder and arm at first, and I mistook it for carpal tunnel syndrome because I worked on a computer all day. Then came the facial pain, neck pain, and the random pains. The spinal stenosis was found by accident, on a CT scan to see what was causing the facial pain.

In the year leading up to my surgery, my symptoms worsened exponentially, to the point that my neck hurt so much I couldn't lay on my back (still can't) and could barely sleep at all. My legs would also ache like crazy all night long, as though I had run a marathon, when I had done nothing at all that day. Climbing stairs was like climbing Mount Everest and going down a staircase was equally hard. I could barely turn my head in any direction, nor move it up and down.

I also developed weakness, especially in my arms. I used to bowl but suddenly I could no longer lift my bowling ball, and the weakness progressed from there. Eventually it became very hard to take a gallon of milk out of the refrigerator or even to hold a cup of coffee. My problems were originally in my right arm and shoulder, and on my right side in general, but both arms and both legs were seriously affected by the time I had surgery.

I even developed problems with incontinence, and this got pretty bad before my surgery.

I would like to report that all my symptoms cleared up since my surgery, but that's not the case. I think the compression lasted for so long that some of the damage has become permanent. I still have neck pain and arm and shoulder pain on the right side. But I do have remarkable improvement. I can type on the keyboard again and sign my name, and turn my head better even though two levels of my neck are fused. So even though my surgery did not relieve all my symptoms, I am very happy I had it done.

I'm two years out from C-spine fusion surgery, and I have a lot fewer random pains but continue to have constant pains in my neck, shoulder, and parts of my right arm, especially when using my computer; i.e., I'm in pain as I write this. I think I also have spinal stenosis in my lumbar spine and am about to get an MRI for it. I have a lot of trouble walking, due to pain that is related to my lower back. But I came so close to paralysis that I am happy I had my neck surgery and happy for anything I am now able to do that I thought I'd never be able to do again.

One of the weirdest symptoms I still get are those strange vibrating sensations that somebody has described. It makes me think my cell phone must be in my pocket, vibrating, when it's not. But when my cell phone is truly in my pocket and somebody calls, I usually cannot feel the vibration that it's making, though I've got it set to vibrate. Go figure.

So don't let anybody convince you you're crazy, if you have C-spine trouble and are experiencing weird pains, tics, cramps, etc.

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