A brief history for those who have not been reading me for a full year and a refresher for those who have.
I have been diagnosed with a condition known as neurofibromatosis. Basically I have a tendency to develop benign tumours on my nerves. This was discovered when I developed one on a branch of my left sciatic nerve, the nerve that controls the leg. I first started feeling pain in my leg about 8 years ago. When it started, it was infrequent and not too severe. I went to several doctors, but none of them had a conclusive answer (sciatic pain being one of those conditions that can be caused by a great number of underlying problems). As time passed the pain became more severe and more constant. Unfortunately, I was in college at the time, with crappy student health insurance and no means to see a neurologist. Best they could do was prescribe me ever-increasing strengths of pain relievers, which they did with great reluctance.
By the time I graduated from grad school, the pain was intense and constant, and severely restricted my daily activities. I'm still not entirely sure how I managed my last year. Once I got a real job with real insurance, I started looking for specialists to help figure out some way of easing the pain. Thus began more than a year of tests and appointments with neurologists, orthopaedics, pain specialists, and others, all trying to figure out what was causing my pain. Most of the focus was placed on my spine, as I had had spinal surgery many years earlier, and the most common cause of sciatic pain is disc problems.
Surprisingly, they were able to eliminate herniated discs, compressed or fractured discs, degenerative disc disease, bulging discs, spinal spurs, and pretty much everything else having to do with my spine. *Finally* one neurologist got the idea of doing a high-contrast MRI of the sciatic nerve itself, and voila! there was the tumor. It was still small enough to be missed when they weren't specifically looking for nerve abnormalities.
Unfortunately, having a diagnosis didn't really solve things. The only way to truly stop the pain would be to remove the tumor, and based on the fact that it was less than 2 inches from the spinal cord, wrapped around one of the feeder branches to the longest and arguably most important nerve in the body, they were reluctant to operate.
Thus began a regimen of attempting to treat the symptoms, rather than the cause. I was on ever-increasing doses of opioid pain relievers, physical therapy to strengthen the muscles so they wouldn't put as much pressure on the nerve, and muscle relaxants and heat therapy to relax the muscles for the same purpose. The constant pain and random nerve firings caused by the tumor were causing uncontrollable muscle spasms, and muscle atrophy.
By the end of 2006 I was forced to walk with a cane, because my left leg was unreliable in its support of my weight. By the end of 2007 I was on higher doses of opiates than House and it still wasn't managing my pain. I had one neurosurgeon who was convinced he could remove the tumor safely, and having run out of other options, I reluctantly agreed to try the surgery.
And so, in March of 2008, the tumor was removed. The surgery was an amazing success. Because the tumor had grown so slowly, my body was able to develop 'workarounds' such that they were able to remove not just the tumor, but the entire diseased branch of the nerve without loss of function (isn't the human body amazing?). So my left sciatic nerve has one less branch feeding into it, but it still works as well as anybody else's. And the pain was gone. It was amazing. I'd forgotten what it felt like to be pain free.
Now, why am I rehashing all this ancient history? Well, there's one thing you need to know about people with neurofibromatosis. We can never just have one. In fact, it is part of the definition of the condition that there be multiple nerve tumors (neurofibromas). After all, one is just a fluke; multiple is a "tendency". I actually have a small raised bump on my left knee that my GP dismissed as a benign cyst - ugly, but ultimately harmless - that is also almost definitely a neurofibroma, just one that isn't causing and problems being situated on a tiny nerve just below the skin. The doctors speculate that I probably have more randomly throughout my body, all of them just sitting there minding their own business. It was because of the size and location of the one on my sciatic nerve that it was such a problem. So I've always known that more could develop some day that would also cause problems.
But really. Is one full pain free year really *that* much to ask?
A little over a month ago I started getting twinges down my *right* leg. I told myself it was nothing - maybe a pulled muscle or tendon or something. But they got more frequent, and today . . .
Today the pain is undeniable. This time it's the *right* sciatic nerve. And it hurts just like it used to on the left. Oh it's nowhere near the level of pain I was dealing with this time last year, right before my surgery. This is the kind of pain that can be dealt with by popping a couple of Advils. But it's the same *type* of pain. And I'm desperately afraid it's the same cause.
I guess I'm lucky. If this follows the same time line as the other one, I figure it'll be a good 2 or 3 years before I have to pull out the opiates again. Even longer before I'll have to think about surgery again (the bigger the tumor, ironically, the easier it is to remove).
Good thing I didn't get rid of the canes.