The Continuing Medical Insanity of Brain Injury

Published Categorised as Health, Personal, Brain Health

You know, it’s a good thing I grew up in a medical family, learnt how to do research and search through libraries from a young age on, studied hormones from age 11 until, I think, 22 (through sex ed, biology, sciences), and took a one-year physiology course at the University of Toronto, else I may too have missed the big friggin’ hole in my test results, namely that the lab ever so kindly neglected to send the doctors two important test results when they sent their report. Oh yeah, the lab said, when I called (because heaven forbid doctors notice such things and follow up), the results are here, we did them. Could you, like, send them on, I asked. We sent the report, they said. Not those results you didn’t, I said. Oh but we did them, they said. I know you did them, I said, could you send them on? We can resend the report, they said. Not the report, the missing test results. Oh sure, they’re all here. Head to desk. Repeatedly.

Actually, only one doctor would’ve noticed that some of the results were not in the report, the one who ordered them, except that she didn’t. I also have discovered that her twit of a resident in that list of hormonal tests they gave me to have done had miswritten one, which is why the lab had said they didn’t do it. But I’m getting ahead of myself. This whole kerfuffle started yesterday when the test-ordering doctor’s office phoned to tell me that given my test results, she wanted to see me about management. In May. Late May.

Yes, folks, it wasn’t an emergency to her, no way they could squeeze me in earlier, perhaps put me on a waiting list for an earlier time, I just had to suck it up and stay worried about what could be wrong about my test results for almost 3 months. F* that.

I called my GP, after hyperventilating to my mother. He had been sent a copy too, looked at them, and told me what was wrong and then sent me a requisition form for the right cortisol tests, which I have to figure out how to get done. Hormonal tests are not easy, no just showing up any old time and being on any old medication. And some are not easy to interpret either. And then it doesn’t help when the lab decides to hang onto the results, which I understand is common. It took me all afternoon — only because labs are not allowed to release results to patients even though doctors are required to give patients a copy when asked and so I had to find out fax numbers and the entire list of tests so that I knew which ones were missing. I only realised one was missing because I had to pay for it and, when my GP sent me copies of my results, had seen that that expensive test was not there. Then I discovered two were actually missing. I was exhausted at the end of it all.

These were all being done so that when I see a pituitary specialist, also in May, she’ll have the results in front of her. The doctor who’d ordered them thought that the car crash that caused the brain injury had also traumatized my pituitary. It certainly acts like it’s having a hard time and needs some therapy.

The current theory is that I might be having an underperforming pituitary, which can affect all or some of the hormones it’s undersecreting. As far as I can tell, the “cure” is to replace those hormones by tablets or injections, always a tricky proposition given hormones fluctuate during the day, the week, the month, in response to stress. I may be able to get some help for some of these hormones from another specialist (yes, my life is full of specialists, I’m so special) I happen to be seeing later this month. So, under GP’s orders, I’ll be trotting there with test results in hand.

In the meantime, after ten years of internal crappiness, I have a lesson for doctors: if someone’s banged their head, test the bejesus out of their blood. Don’t just ask them who the Prime Minister is, tell them to stand up and walk, then pat them on the head and send them out the door, test their blood, test their heart, test their blood pressure, test their hydration, listen to their complaints. And if you don’t know what the results mean, send them to the right specialists.

Ramryge angels at Gloucester Cathedral, England

Brain injury grief is

extraordinary grief

research proves

needs healing.

Better yet, why is there no comprehensive clinic for closed head injury?

I went to neurorehab, saw a physiatrist, and though it was ten years ago, simple observation, listening, and reading of the literature should’ve told them to go beyond teaching me how to compensate for cognitive deficits and to examine how my body was functioning because, you know, the brain runs your body. Not just arms and legs, the obvious stuff, but the heart and stomach and adrenal glands too.

But they didn’t. And today, I’m being sent from specialist to specialist, each in a different hospital, as doctors scratch their heads because medicine has become so specialized, medical education so inadequate on the basics (imagine this: I spent more than double the time studying physiology in the Faculty of Arts and Sciences than med students did and do), that if it’s not in their area, they actually don’t know what area it’s in. It’s nuts.

If there was one clinic with internists and specialists and psychologists who all were familiar with brain trauma in addition to their own specialty, who all worked together, in which you got a full workup from appetite testing to body composition to blood and urine to physical to cognitive, including full-head EEGs and scans, you may actually get properly assessed and proper treatment, especially for those hidden problems.

My Duck logo walking on my books in pink and blue shading.



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