I went to the neurosurgeon’s grand rounds today. I was disappointed because he didn’t say any of the things I asked him to with the emphasis I asked for. I really wanted him to say to the doctors/medical students that it was really important to do an MRI for anybody with facial pain, even if the presentation is unusual. (Of course, in my particular case, it is beyond the pale that the gastroenterologist who admitted me last year made up a facial pain diagnosis for me — post-herpetic neuralgia — and thought I had a conversion disorder and my former neurologist didn’t bother to look at the images once I finally had an MRI or even consider that I may have TN from MS, although there were red flags waving all around him.)

I have to put this in context, of course. The conversation we had two days ago was significant for me and I believed I had been heard. Now we go back to this neurosurgeon’s life. He had been out of the country and had just returned two days ago. He has a significant number of demands being made on him from many different directions. In fact, during his 40 minute presentation, his communication device rang/buzzed several times. I’m just one sad story among thousands of other stories he deals with or has dealt with. I am sure that after our phone call, he didn’t look at his presentation or even think about it until he was giving it, as it was at a level I could understand, and he’s probably given it many times.

It is also disappointing that nobody in his office responded to the urgent re-referrals to his office from the MS neurologist or my GP. The MS neurologist contacted his office and learned he was out of town. My GP didn’t hear a thing. I guess his support staff are too busy too. And this time of year seems to send the whole system into chaos.

So, it’s hard to feel anything but mild disappointment. My story is my story and I’ll work on ways to tell it so that it has an impact on how care is provided. I don’t have the profile or the prestige of a top-notch neurosurgeon. And I never will.

I had a chance to meet one of the doctors from the St. Paul’s Pain Clinic, so that was a plus. And when I got home, I had a letter from a new neurologist with an appointment scheduled for mid-January. I hope that she will be able to support me through my MS. The lovely MS neurologist will continue to see me on an annual basis once our preliminary work is done (get out of pain, take baseline measures with enhanced MRI, eye exam, decide on treatment course, if any) but I’ll need a neurologist I can see more frequently if necessary. So, that’s good news. Once we establish a working relationship, I can have my case transferred.