Why I Always Read My Procedure Notes

Yesterday I found out that I have what is called a bone island in my left knee.

This is usually just a benign tumor in the knee. For me, it’s located where the top of my knee meets the bottom – the lateral condyle.

It explains part of my pain. After all, my left knee is by far my worst joint. I think it always has been. However, it gave me a major anxiety attack yesterday because I found this reading notes in MyChart as opposed to being told… But also because these can be the beginnings of cancer.

And I didn’t need to learn that from a laptop screen.

Naturally, my anxiety spiked way the fuck up. I’m still fatigued from that anxiety attack. I’m exhausted and nervous. Chances are that it’ll stay benign, but that’s not easy to tell myself when I’m so often the zebra in a room full of horses.

When I had my spine MRIs, I learned that I had a bulging lumbar disc. While not uncommon, it also changes how I handle things. It explained a lot about my back – the pain, spasms, etc.

Knowing also means I take it easier on my back. I’m not as mean to it as I might otherwise be.

These bits of information in our procedural notes often go untold and unexplained. We may never figure this out without checking ourselves or having another provider read those notes.

This brings me to a number of questions:

What if I didn’t have access to these notes? Or if I didn’t have the health literacy to navigate them?

And what about shared decision making? I can’t fully participate if I don’t fully know what’s going on. As a sex educator, I know that informed consent can’t be given if you’re not informed. Providers have to hold up their end of that bargain, whether it’s my rheumy or the radiologist.

How many of us are walking around dealing with unnecessary pain and more that might be listed in our medical files that we don’t know about?

If you can get access to them, always get and read the notes from the procedures you go through.