Last week, Wednesday, January 21, I was scheduled to be a volunteer patient for an examination of cranial nerves again. As I sat in the waiting room, I learned that the instructors were neurosurgeons, instead of 4th year residents as occurred last year.

I was the last volunteer to be called into the examination room. The instructor came to get me and introduced himself to me. I was a bit nervous because it was Dr. Honey . He and I had met just over two years ago at VGH when he turned me down for surgery as the Dilantin I was taking was managing my pain. (A week after that I developed an allergy to Dilantin and ended up going to Winnipeg for the surgery.)

Although we had not communicated face-to-face, I had written to him several times. (I also had a BC College of Physicians & Surgeons complaint lodged against neurologist #3 that he had been asked to give an opinion on.) So, I assumed that my name might ring a bell.

As we walked down the hall to the room where the students were, he asked me a few questions about my case, as he wanted to make sure that I was the correct person. — even to expert eyes and ears, I come across as completely healthy. I told him I thought he would remember me as we walked through the door. He told me that he couldn’t remember all of his thousands of referrals. Then I responded saying that I thought I’d be a bit more memorable than the average case, especially as we had a longer than average history .

The evaluation was relatively short as there are not a lot of cranial nerve issues with me right now other than the numb face from the rhizotomy. Dr. Honey also noted that my left optic disc was pale. That could be from the MS. I’ll discuss it further with my neurologist. The neuro-ophthalmologist told me 2 years ago that I didn’t have “MS eyes”, so there is the possibility that this is something new. As I’m legally blind in my left eye, I would not be aware of any visual disturbances.

The other significant finding was how impaired my right corneal reflex is after the second rhizotomy. Last year, as a volunteer patient, it was not nearly as impaired. Granted, I wasn’t as numb either.

We ended the session with an interview about the experience. Dr. Honey wanted the students to understand the depth of the trauma associated with the pain. He asked me if I had experienced childbirth. I told him that I had not but told them that my neurosurgeon in Winnipeg said that TN was worse than having an arm ripped off in a car crash or having a caesarian section without anesthetic. I heard one of the male students gasp with that description.

As I tried my best to talk about the experience, I actually started to cry. I never cry in front of doctors but this time I was a bit caught off guard because I do everything I can each day to try to forget the horror. It takes a lot of mental discipline. Dr Honey checked with me to make sure I was OK with him pushing a bit, got me a box of kleenex, and I told him I was happy to answer the best I could. The tears stopped but I did tell them that I had considered suicide but couldn’t figure out how I could do it without traumatizing my husband. He then made a comment about how amazing it was to have somebody in horrific pain concerned about causing pain to her husband.

It became clear that he was starting to put the pieces together about my story and who I was near the end of the session. He did seem a bit nervous that I was going to say something more . . . but I had no intention of making things more difficult for him or for me.

We ended the session in a relatively short time. I was pleased that I had a chance to see Dr. Honey again face-to-face and not in a hospital bed! I did get a quick chance to say that they shouldn’t accept a diagnosis of ‘idiopathic trigeminal neuralgia’ without ruling out all the possible causes of facial pain first.

I wrote an e-mail to Dr. Honey when I got home, reminding him of who I was. He did say that he put it together while he heard my story. He thanked me for my volunteerism for student education and support for patients with TN. All in all, it felt right.

One day, I hope that Dr. Honey and I can co-present on trigeminal neuralgia. Do you think that could happen?

It’s amazing to me that three years ago on New Year’s Eve, I was in the hospital with a tube feed, in pain, on drugs, with gastrointestinal problems and feeling miserable. Two years ago, I was flying home from surgery in Winnipeg. Last year, I didn’t have much energy. But this year, I had enough energy to go to a party at our neighbours’ house with a theme of “Sequins and Bow Ties” where we actually danced. I danced wearing my pumps too!

It’s been a year with some nice moments and some good energy. I rode my bike, I travelled a bit, wrote a few articles for newsletters, one of which was published on an international website.

I’ll write a more detailed post soon . . .