I Do Not Want What I Haven't Got


On Tuesday, Erin had her hair shaved. She looks good.

Those of you who have been reading this blog a while will know that Erin suffers from a condition called Trigeminal Neuralgia. This is a chronic, degenerative condition where the Trigeminal nerve (the nerve that is felt during root canals or severe migraines) fires, suddenly and at peak intensity. The pain is often intolerable and often causes sufferers to black out. For this reason, Erin is legally barred from driving. Those are the flashes. Sometimes, the pain sticks around, knocking Erin onto her back for a day or more until it relents.

Back in the summer of 2004, Erin’s pain flashes were progressing, from once per month to multiple events per week, and we looked for ways to deal with it. Until recently, the only solutions were a regimen of debilitating anti-convulsant drugs, or risky brain surgery. We bought ourselves some time, however, with a temporary method, bathing the nerve receptors with glycerol in a process not unlike dental freezing, but one which lasted for years, rather than hours.

Unfortunately, starting last July, Erin experienced breakthroughs of pain once again, and the recurrences have been getting more frequent, suggesting that the temporary treatment is wearing off. Our choice now was to renew it (good for another couple of years), or possibly turn to a procedure that has come off the experimental stage.

Doctors have reported remarkable results from a piece of equipment known as a gamma knife. This process, pioneered by the University of Pittsburgh and extensively tested for the past nine years in specific Canadian hospitals, focuses a beam of gamma radiation into the brain stem to, essentially, cauterize the offending nerve and end its function (it’s also used to deliver a focused, killing dose of radiation to tumours while leaving the surrounding cells intact). The beam can be aimed with better-than-pinpoint accuracy, and the process is said to have had a success rate as high as 80%. It also virtually eliminates the risks of brain surgery, since it is incision free.

The process was known to us back in 2004, but as it was still in the experimental phase, Erin opted for the temporary solution, to give the process more time to become routine. It didn’t help that the specialist in charge of her case, Dr. Vlad (no, really, that’s his name, Dr. Vladimir something, but he has good-naturedly allowed us to call him Dr. Vlad), is a brilliant man very much in love with the procedure, who seemed really, really eager for Erin to try out the new process — or possibly really, really eager to try out the new process on Erin. Note the subtle difference in the two phrases and you’ll see why we were a bit hesitant to take on the role of lab rat.

But three years on, with more miraculous results reported, and with Dr. Vlad providing excellent care and support, we have decided to go with the procedure. With a young daughter in our care, we can’t afford to be dropped every time this medical condition sneaks up on us. So we’ve scheduled surgery.

Today, as I type this, Erin is going into Grand River Hospital for a hefty MRI to map the base of her brain and prepare the route for surgery. And, unfortunately, between the lengthy MRI and the procedure itself, they asked Erin to shave her head. Which, while it seems strange to say this in print, I’m sure some people will understand how this was one of the things she was most dreading.

Fortunately, the doctors recommended that the hair-shaving be done by a hairstylist. And, upon further questioning, they said that she didn’t have to be cue-ball bald, but that a hair length of a quarter inch was acceptable. Our hairstylist took the job with grace and did an excellent job making Erin feel better as the cutting proceeded. And it helped that the buzz cut looked far better than Erin had feared. Actually, it looks pretty decent. And with this out of the way, it’s one less thing for us to fret about.

Erin’s mother kindly forwarded these pictures to the rest of Erin’s family in the States, calling it Erin’s “Sinead O’Connor look”. The humour is appreciated, as is the prayers and good will we have received as we enter another fraught, medically-themed month. But I’m confident. Maybe Dr. Vlad’s exuberance has rubbed off on me, but I am keeping my fingers crossed that, by the end of the month, Erin’s Trigeminal Neuralgia will be a thing of the past, and we can look forward to Vivian’s childhood, pain free.

Update: Cure?

As I said before, Dr. Vlad is utterly brilliant, but… Let me put it this way: when a doctor essentially shouts “Oh, goody! I get to do brain surgery!”, you can imagine the benefits of being treated by someone with such a can-do attitude, but you can also imagine how off-putting it can be.

Today was supposed to be just an MRI to map out the brain stem for the gamma knife procedure. However, when Erin asked why others with this condition had reported that they’d been treated in one day, he talked a lot about taking time to process the MRI results. He then processed the MRI results on his laptop, showed her the map, and then signed her up for the gamma knife procedure that hour. If he had taken the device out of his pocket and gone “zap!”, it couldn’t have gone any faster.

This, my friends, is the advantage of having a medical condition whose latest treatment is on the cutting edge of science.

Delightfully, all the results, and the before and after pictures, suggest that this was a “textbook” case of Trigeminal Neuralgia. That’s a wonderful thing to hear from a doctor who is basically writing the textbook on the procedure. In the “before shot”, we could see the blood vessel that was wrapping around the nerve and triggering so much pain, and in the “after shot”, we could see the buffer of soft scar tissue that they’d inserted to cushion things. And we are highly confident that Erin will never feel any pain from that nerve, again.

Having lived with the threat of constant pain for the past few years, having that threat suddenly removed is hard to describe. There’s euphoria, of course, but also the sense that a part of your life has suddenly gone missing — like how you stumble when the wind you’ve been constantly leaning against suddenly disappears.

We have every hope that this is indeed the dawn of a new era for us.

Starting with getting Erin’s driver’s license back.

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