The "Suicide" Disease

Next Friday, I'll have a surgeon cutting a hole in my skull.

In October 2004, I went to the dentist for a root canal and ever since I've had a condition called trigeminal neuralgia (TN), a neuropathic disorder of the trigeminal facial nerve which causes "stabbing, mind-numbing, electric shock-like pain". For a long time, we had no idea what was wrong with me. I had three dental surgeries and a molar pulled before I decided the pain was not going to be helped by dentistry. Apparently, this is common amongst TN patients. After seeing many doctors, including an otolarynologist, I finally made it to a neurologist who quickly gave my pain a name.

I was happy to learn that TN is considered one of the most painful diseases to have; now, I didn't feel like such a wimp for feeling so bad. For five years it has hurt to brush my hair, brush my teeth, wash my face, eat, smile, laugh, live. TN is called the "Suicide" disease because so many with the disorder end up killing themselves. As I type this, it feels like a screwdriver is being jammed into my left ear - and I've only just woken. I lightly scratch an itch above my lip and the pain spreads there. As the day progresses, the pain will spread and get worse.

My neurologist is using the typical treatment for TN: anticonvulsants and opiates. Unfortunately, it is difficult to have a good life with these medications, especially in the large doses I'm prescribed. I have also gotten to the point where the opiates no longer control the pain. I have to take another option: Microvascular decompression.

So, next Friday, my surgeon, one of the best in the world, will cut a small hole in my skull behind my left ear and attempt to isolate the trigeminal nerve. If it appears that isolation is not going to be helpful, the surgeon will damage the nerve.

Patients are put to sleep using general anesthesia and are positioned on their back with their head turned or on their side with the symptomatic side facing up. Electrical monitoring of facial function and hearing is used. A straight incision is made two finger breadths behind the ear about the length of the ear. A portion of the skull the size of a half-dollar is removed exposing the underlying brain covering known as the dura. The dura is opened to expose the cerebellum. The cerebellum is allowed to fall out of the way exposing the side of the brain stem. Using a microscope and micro-instruments, the arachnoid membrane is dissected allowing visualization of the 8th, 7th and finally the trigeminal nerve. The offending loop of blood vessel is then mobilized. Frequently a groove or indentation is seen in the nerve where the offending vessel was in contact with the nerve. Less often the nerve is thin and pale. Once the vessel is mobilized a sponge like material is placed between the nerve and the offending blood vessel to prevent the vessel from returning to its native position.

After the decompression is complete, the wound is flushed clean with saline solution. The dura is sewn closed. The skull is reconstructed and the overlying tissues are closed in multiple layers. The patient is allowed to wake up and is taken to an intensive care unit or other close observation unit.

Here is a three-minute TV news report explaining TN:

For those with strong stomachs, here is a minute and a half video of the microvascular decompression:

I'm quite nervous about the surgery. I don't like surgeries at all and just had one a few months ago for my gall bladder. I seem to be trying to see how many surgeries I can have this year.  The gall bladder removal was a very simple, common surgery; this one involves opening my skull. That frightens me and I'd really appreciate your prayers.