The Identity of the Beast
My intention to stay off TN-related topics seems to be taking a beating. My excuse is that just when you think there's nothing new to say, there's something new to say.
For some while now, I've been pinning my hopes for a future on surgery. About a month back, my PCP decided my TN met a reasonable definition of "intractable" and got me a referral to a downtown clinic with auspicious credentials to discuss surgery.
The neurologist with whom I met is one of those who ... let's just say, he has about about as much experience as anyone living when it comes to surgical treatments for this disorder. It then gave one pause to hear him say that he wishes now he had not done most of them. With each year, it seems, more and stranger unexpected effects surface. In many cases, the duration of the relief is much less than claimed by many enthusiastic advocates. In his opinion, it is almost impossible to avoid permanent loss of sensation in the face, in either the short or long term. Accompanying that loss of sensation may be frightening episodes of phantom pain in places where one should not be able to feel anything. Above all, I was fascinated to listen to the humbling experience of a man nearing the end of his career, hearing him speak of how utterly persistent the nervous system can be in finding ways around the barriers created by puny humans. "We do not know enough about the brain," he said. "We should not be doing this."
On an objective level, I found this one of the most profound experiences I've ever had in conversation with a doctor. I very much wished I was just covering the story, and did not have a stake on the table.
I do have a stake on the table. I took away from the conversation the realisation that there are perhaps some things I cannot bring myself to risk in this contest. I am vain enough to fear the mutilation of my face that could follow from these procedures. I am candid enough with myself to believe I would find it nearly impossible to risk this much, only to have worse pain than ever return in three years or less. The doctor read this in me, and confirmed it. High as the risks of suicide are for intractable TN, they are higher still when the surgery fails.
We are going through the inevitable motions. I have another brain MRI scheduled. I know now what to expect, and now have a superior who owns a definitive heavy metal collection to borrow from while I get zapped. I've been bled for another round of tests. I'll chat it up with my PCP. Life keeps one in its grasp.
The final humbling realisation is that I have misnamed the Beast, for my enemy is my own brain.
For some while now, I've been pinning my hopes for a future on surgery. About a month back, my PCP decided my TN met a reasonable definition of "intractable" and got me a referral to a downtown clinic with auspicious credentials to discuss surgery.
The neurologist with whom I met is one of those who ... let's just say, he has about about as much experience as anyone living when it comes to surgical treatments for this disorder. It then gave one pause to hear him say that he wishes now he had not done most of them. With each year, it seems, more and stranger unexpected effects surface. In many cases, the duration of the relief is much less than claimed by many enthusiastic advocates. In his opinion, it is almost impossible to avoid permanent loss of sensation in the face, in either the short or long term. Accompanying that loss of sensation may be frightening episodes of phantom pain in places where one should not be able to feel anything. Above all, I was fascinated to listen to the humbling experience of a man nearing the end of his career, hearing him speak of how utterly persistent the nervous system can be in finding ways around the barriers created by puny humans. "We do not know enough about the brain," he said. "We should not be doing this."
On an objective level, I found this one of the most profound experiences I've ever had in conversation with a doctor. I very much wished I was just covering the story, and did not have a stake on the table.
I do have a stake on the table. I took away from the conversation the realisation that there are perhaps some things I cannot bring myself to risk in this contest. I am vain enough to fear the mutilation of my face that could follow from these procedures. I am candid enough with myself to believe I would find it nearly impossible to risk this much, only to have worse pain than ever return in three years or less. The doctor read this in me, and confirmed it. High as the risks of suicide are for intractable TN, they are higher still when the surgery fails.
We are going through the inevitable motions. I have another brain MRI scheduled. I know now what to expect, and now have a superior who owns a definitive heavy metal collection to borrow from while I get zapped. I've been bled for another round of tests. I'll chat it up with my PCP. Life keeps one in its grasp.
The final humbling realisation is that I have misnamed the Beast, for my enemy is my own brain.
Labels: neurological surgery, trigeminal neuralgia
posted by Uncle | 23:08
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