Here’s another first: the spine specialist called me himself to answer some of my questions instead of leaving it to his staff.

Typically, my questions have been met with disdain or frustration. Medical staff don’t like patients who want real explanations. They all want to rely on that Appeal to Authority, and I’ve been snubbed or ignored completely (they refuse to answer or return my calls or emails) by doctors who didn’t want to have to explain themselves.

I was talking to scheduling to set up the MRIs he ordered, and they were all without contrast. Since I know one thing he was checking was whether my syrinx had grown, and the research I’d read said you cannot see a syrinx clearly without contrast (doctors and other people with syringeomyelia had said the same), I didn’t understand why he didn’t want contrast. This became a series of phone calls from his staff telling me “he didn’t need the contrast to see what he needed to see”. I explained to each of them (three phone calls) that I wanted a clarification since this contradicted everything I’ve read, seen, and been told. All they could offer was a repeated “because he said so” response.

Everyone was nice enough. One girl seemed frustrated and cut me off a little, but maybe she’s just having a shitty day, or she’s just a bitch. The last guy I talked to, though, did have a better explanation for part of my queries, but he still couldn’t clarify things well enough. So, he promised to have the doctor call himself.


Not a week later. Not a few days later. Not the next day, but within two hours!

I’m still sort of in shock. That doesn’t happen. It’s one of those Hollywood-born myths based in the fantasies of those who know nothing about the reality of doctor-patient relations. Particularly among specialists – they’re too busy and don’t have the time or patience to call people, so they leave it to nurses or assistants. Even when the relay isn’t sufficient, the best I’ve gotten before was the command to set another appointment to talk with the doctor in person.

Maybe it was just because they know I’m three hours away, and they don’t want to make me endure that drive just for simple questions? Maybe that’s just his style? Maybe I just got lucky and caught the team on a good day? I dunno, and I don’t care. I’m just so comforted by not just the gesture but by the conversation itself as well.

He spoke calmly and didn’t act irritated with me or in a rush to get off the phone. He made sure I understood him instead of offering some sort of ‘take it or leave it’. He even offered to do things the way I’d learned to expect if it would help me feel better, and then he called his radiologist for input and called me back.

It turns out, according to him, that once a syrinx has been imaged with contrast, all future scans can be done without contrast and compared to the original with contrast to ascertain whether it has grown or shrunk. Also, not all machines are equal. Some give clearer images than others. My explanation to him included that I’d looked at my own scans and could not see the syrinx itself in the ones without contrast except for the little bubble of internal septa. His response was that with their MRI machine, they can see at least the boundaries clearly, which is all we need to check for growth. (This is when he called the radiologist and called back.)

He was also concerned about the impact of contrast on my weak kidneys. Apparently, even if every time a person has been given contrast there was no adverse reaction, it’s entirely possible for the person’s body to spontaneously react. That and the time it would take to do MRIs without contrast and then with contrast for my brain, cervical, and thoracic spine would take too long in his opinion.

I also shared with him that research shows people with connective tissue disorders need positional imaging to check for Chiari, and he immediately said he’d add flexion and extension to the brain MRI.

He didn’t act defensive like I’d threatened his ego. He didn’t insult my education, intelligence, or ability to discern quality research from Google MD or Wikipedia muck. He didn’t write me off as overly anxious; he understood that my questions and concerns were valid and deserved complete responses.

He answered all my questions and put my mind at ease. He showed me that I do have a voice in my medical care, and my voice will be heard. He also demonstrated that he’s confident enough to give honest answers and humble enough to understand that sometimes he might be wrong.

He’s a good enough doctor that I finally feel like I can stop being so anxious. I don’t have to fight to be heard or get the care I need. I can let go of some of this worry and start trusting again.

In theory, anyway. It’s gonna take some work to get myself into that head space where it’s ok to trust doctors. Every time I have, it’s resulted in more damage, either emotionally or physiologically. I just keep trying to tell myself…

This time, it’ll be different, and I’ll get what I need without the fight.

#beyourownadvocate  #manifestyourdestiny