We got back home yesterday afternoon from Winnipeg. I’m feeling relieved but exhausted. I made a short video in the hospital a few hours after the surgery. I’ll just post it for now. This was on the evening of Tuesday, September 16, 2014.

I’ve confirmed everything with Winnipeg today. They have really been exceptional and are moving so quickly. I had great fear of being abandoned like I was in 2011- 2012 but they’re all amazing. I never see efficiency like this in Vancouver. All the people I speak to are thoughtful and caring.

Surgery is set for next week, if you can believe it. We’ll be repeating the balloon compression rhizotomy. If and when the pain returns we’ll consider other options. As my MS is doing very well, Dr. Kaufmann thinks this is the way to go for now.

I am so fortunate!

I had so hoped I’d be able to post a few nice things before posting about my pain. I had a really good summer and even had the chance to go on a trip. I haven’t blogged about that yet. There has also been a huge and great surprise in my life that I will write about very soon.

Today started off as a really rough day. The trigeminal neuralgia started becoming more of a problem on August 28 with more shocks on my palate. I increased my medication of Lyrica (75 mg bid since April 24) up by another 50 mg on the 29th. By September 1, I was at 125 mg bid, then next day 150 mg bid, then 200 mg bid on September 5.  I thought this would be enough for at least a while but I had tons of electricity in my face this morning, so I upped it another 50. It took me over an hour to eat breakfast. I took the video above when I was half way through breakfast.

Every time I pause/stop speaking in the video, it’s because I have electric shocks in my face and I’m holding steady, hoping they don’t get worse or travel farther up my face.

Things have settled a bit now. I was able to have a cup of tea and brush my teeth. I sat outside a bit for my Vitamin D. And now I wait to hear back from Winnipeg. I am approaching the maximum daily dosage for Lyrica. I’m allergic to two other drugs that are most effective for TN.

I am sure that this is simply a healing of the trigeminal nerve since the last rhizotomy on December 27, 2012. The problem area in my brainstem (pons) has not healed adequately to prevent the pain. What happens is that the signals from the parts of the body served by the trigeminal nerve misinterpret normal sensations as pain sensations. For me, unfortunately, the most painful things I do are eating and sometimes talking. And when it’s really bad, even swallowing saliva can elicit the pain. Do you know how many times a day you swallow?