My Brain AVM: Thoughts on Pain

I’ve talked before about how I have a lot of privilege, considering that I had a brain AVM that required surgical intervention and that I’m now disabled. Part of that privilege is that the whole journey came with very little physical pain.  I’ve had some reminders of that recently.


Vector illustration - red grunge stamp with "PAIN" written in white letters. Keyword: brain AVM

Image Description: Vector illustration – red grunge stamp with “PAIN” written in white letters

Content Note: Chronic pain, stroke, brain surgery, dental work, friend death, Hurricane Harvey, Hurricane Irma, Hurricane Maria, Puerto Rico hurricane damage, Las Vegas mass shooting

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I got a terrible headache when my brain AVM first leaked and caused a hemorrhagic stroke in the middle of a job interview. I know now that my pain tolerance is pretty high, because I not only finished the interview (and got the job), I walked to the doctor’s office and then walked home. I sometimes get migraines, and it’s not the pain that sends me to the hospital (even though the pain certainly isn’t pleasant)…it’s that my migraines make me throw up, and after a while I have to get a shot of Gravol to settle my stomach enough to let me keep my seizure medication down.

But, like most people, I don’t like pain, and I’m glad that I didn’t experience much of it with my brain AVM and stroke. I had some awful headaches after the surgery to treat my brain AVM, but who wouldn’t have headaches after having their head opened?

My friend Jason, who had a stroke when he was a bit older than me (not related to a brain AVM; he was in a car accident) wasn’t so lucky. His stroke came with central post-stroke pain. He didn’t talk about it much, but his mother once told me that he almost always had intense pain in his affected hand. I don’t know if I could have dealt with that and stayed as positive as I have through my recovery.

I’ve had periods since my stroke where I’ve dealt with chronic pain. Specifically, I’ve injured my weak leg a couple of times, badly enough that at times even a short walk to town was too painful to think about. But the pain ended with rest, elevation, and ice.

Mouth and teeth pain is a whole different ball game.

Pain That Won’t Be Ignored

At the beginning of September, my teeth were sore – all of them, it seemed. My head was aching. My ear, which had been hurting on-and-off all summer for no reason that any doctor could find, was aching. I was pretty sure that I knew what was wrong, but a trip to my dentist confirmed my suspicions that I’d been grinding my teeth again, and needed to started wearing my mouthguard to bed at night.

“Why haven’t you been wearing your mouthguard?” my dentist asked,

“Because I don’t like it,” I said, feeling (and probably sounding) like a mopey five-year-old.

“You need to wear it, or this will keep happening.”

So I did. And when the headaches and mouth pain didn’t go away, I figured that it was just because I’d made my muscles especially sore, and went about my business. Until one day, when it felt like the side of my face literally exploded – I didn’t know that teeth could hurt that much, and with my head pounding and the stabbing pain in my ear, my dentist got me in for a same-day appointment. He armed me with prescriptions for antibiotics to treat an infected tooth and Tylenol 3s for pain control, and I went home and cried on the couch while I waited for the pills to kick in.

I’m now two weeks after a root canal, perhaps looking at surgery to remove wisdom teeth that have just broken through after not moving for twenty years, and still apparently grinding my teeth somehow without knowing it, because my mouth and/or head/ear is always hurting to some degree. I have a muscle relaxant that I can take daily to deal with the muscle pain caused by the teeth grinding, and if I take ibuprofen throughout the day I can usually keep the pain reasonably at bay. But when I’m home I often have a cold can of pop held to my jawline on the right side of my face, because…numb is good.

And sometimes I still cry, because even with the muscle relaxant, and the ibuprofen, and the cold pop can, everything hurts. And I really didn’t realize until this round of mouth pain just how powerless it makes you feel, to be in a lot of pain and know that there’s nothing you can do about it.  It’s lonely. It’s exhausting. I can see why having to deal with severe chronic pain drains people and makes them depressed. I can see why it makes them desperate.

I’m looking at people who have to deal with chronic pain with new empathy, and I have a renewed sense of gratitude for the privilege of getting through this brain AVM journey relatively pain-free.

Jason died a few years back from complications related to other injuries he sustained during the car accident. I miss him, but I’m glad he’s not in pain anymore.

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Pardon me while I get a little political.

Friends in the US are having a very difficult time right now – hurricanes, health care uncertainty, and yesterday a horrific mass shooting in Las Vegas. I struggled to find what I wanted to say about it, and then decided to leave words far wiser than any I could come up with…

…and ask you to please consider doing what you can to support humanitarian efforts in Las Vegas and in areas of the US affected by the recent wave of hurricanes, especially Puerto Rico.

Here’s a list of links:

Support for Victims of Las Vegas Mass Shooting

Support for Puerto Rico – Hurricane Maria

Support for Florida, Louisiana, Puerto Rico, and Texas – Hurricane Harvey, Hurricane Irma, Hurricane Maria

Portlight – Portlight was created specifically to provide emergency aid during weather disasters to disabled people whose needs might otherwise cause them to fall through the cracks. Portlight is helping with relief efforts for all hurricanes.

More of My Writing About Disability and Emergency Preparedness