Do you really understand the medical reality of your chronic illness? Are you good at visualizing anatomy? How about understanding how medical terms work in a complex explanation?
Looking at a broken bone on an x-ray is pretty easy to understand. Psoriasis even makes sense. But, my fairly new journey into the world of meningioma is maddening. My neurosurgeon has been repeating the MRI’s every 3 months, then 6 months, and now will stretch it out to a year.
I’m not trained to read the radiologists reports. I look up the terms, but can’t fully understand the location. I know that having a meningioma is common. There are many types and Grades of these tumors. Most are not a problem and are benign. Mine appears to be stable.
What I can’t grasp is the location and what exactly that means. Mine is at the confluence of the vein of Galen and the straight sinus. The doctor has told me that it’s not a good location, because of the surrounding areas that could be damaged from surgery.
A little over a year ago my MRI showed suspected tentorial incisura meningioma with
chronic vein invasion/obstruction. The MRI this week was summarized this way: extra-axial presumed meningioma at the confluence of the straight sinus and vein of Galen.
The different word used (extra-axial) is a group while (tentorial incisura meningioma) is just a more specific type. So, I wish I had asked if they still would consider it the tentorial incisura meningioma?
More questions for another day, I guess. Or, I might send a message on MyChart.
How do you deal with questions about your diagnosis? Sometimes, if you aren’t sure you want to settle with the diagnosis, you can get a second opinion. That may or may not change the diagnosis, but can put your mind at ease when you are facing a medical procedure.
Living with a chronic illness/es is very hard mentally. This is because it can be so confusing and sometimes answers appear to be subjective. Doctors always say to quit reading on the internet. But, before information was available to us, we had to just trust them. I prefer to know and understand what is happening in my body.
If you’re like me, Dr Google is something I use after appointments. It’s usually to understand medical terms that I don’t fully understand. Even if the doctor explains things well, that doesn’t mean that it sinks in.
When you use Dr Google, look past the AI summary. Look for Mayo or a major university health site to learn true facts and the latest research (usually). Many symptom checker sites can be misleading, because many symptoms aren’t disease-specific.
Dr Google can be helpful before an appointment, if you: tell your doctor symptoms (make a list), ask them about a study found on a serious medical website, be teachable, and be calm. Walking in and telling the doctor your self-diagnosis isn’t going to be helpful.
It’s hard when you go for years and years, trying to find out why you feel so sick. I hope and pray that we’ll all have wise doctors, flare-less weeks ahead, and supportive friends and families. God bless.
@2026, copyright Lisa Ehrman
Disclaimer: I’m not a medical expert. This post contains my experiences and opinions, and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.