Dr. Perry was interested in knowing if I had any photos from my work at GF Strong Rehab Centre to use in my story. I had entered this photo into a nation-wide call for photos from my professional organization to use in a calendar for 2003. This young man had apraxia of speech, meaning he had trouble sequencing speech sounds into intelligible speech. This was from a brain injury. He had full use of language and was able to understand and write in full sentences. Whenever he tried to talk, words came out jumbled and the only intelligible word was a profanity. Isolated apraxia of speech is relatively unusual. Most often we would see this in conjunction with aphasia, or loss of language.

Thanks to Riana at CASLPA for helping me to get a digital copy for use in the presentation.

2014 Update **VIDEO NO LONGER AVAILABLE** accidentally deleted by Adobe

The Trigeminal Neuralgia Association of Canada hosted a webinar today featuring the neurosurgeon who performed my rhizotomy, Dr. Kaufmann. There must have been a few more people with MS attending today as several of the questions were related to the trigeminal pain with MS and I didn’t ask any of them. When speaking about the pain associated with MS he said, “it seems to be worse than the other types of TN, if you can believe that.” I guess I would say that I believe it although it’s impossible for me to compare them and we all experience pain differently. I did ask a question about emergency management of pain and he recommended having something written up ahead of time to take into ER or a doctor about the diagnosis and the fact that the pain is real. I gained some insight into the longer term management of my pain. I don’t want to think about it too much for now.

The webinar is now available for viewing at: http://tnac.adobeconnect.com/p447hoxoswc/

I had quite a nice day today. I went out to UBC and met with my dentist, Dr. Schmidt. He is building me a brux guard for my teeth. He’s so pleasant to see and he teaches me while he does his work. He’ll build models and then decide the best way to protect my teeth at night. I’ll be back to see him in a couple of weeks.

I also had booked a meeting with Dr. Perry, the very kind doctor who admitted me to UBC hospital in mid-November. He is very interested in pain and wanted to understand a bit more about my pain.

On way way to Dr. Perry’s office, I walked down the MS Clinic corridor and saw my MS neurologist walking into his office. I stopped by and peered my head in the door to say ‘hi’ and let him know how well I was doing. He was pleased to see me and asked me to book an appointment with him so we can figure out the next steps. I told him I was still a bit anxious about the pain returning and he told me that it was completely understandable after having suffered that type of pain. It will always be part of me. So, I’ll see him again in a few weeks.

Dr. Perry introduced me to another young female doctor who is studying anesthesiology in Calgary. She and I met while he saw another patient. I didn’t get all the details about her because she was such a good listener that I got to do all the talking. Very nice, smart, interesting. She gave me some good advice on managing some of the basics with the MS.

When Dr. Perry joined us, we had a discussion about what to do with the film he took of me when we first met in urgent care at UBC. It is very difficult for doctors to differentiate types of pain and I presented a bit of a puzzle because there was some concern from my GP about a possible suicide attempt (and I still say that we would put animals down if they were in as much pain as I was) and I hadn’t yet been officially diagnosed with MS and the lesion on my pons had not been identified. I passed all the basic neurological screening even when evaluated by a neurologist again. She was a really top-notch neurologist and I learned today that she did make a case to admit me. And when they admitted me Dr. Perry worked with me and my MS neurologist to get me out of the pain.

Dr. Perry is interested in developing a teaching tool based on my story. We’ll want to talk about what did and didn’t relieve the pain, and how to teach students about managing complicated pain presentations, especially in emergency or urgent care. I’ll be involved in the telling of the story and he and the other doctor will be involved in fine-tuning and editing it. There is nothing I love better than to have a project to work on!

On my way home, I dropped by my hairdresser and got my hair cut — it felt like a real test of the rhizotomy to have her working all around my head and the areas that would have caused me pain. I hadn’t seen her since October so, it felt pretty good to neaten up a bit.

All in all, it was a day where I could be myself. I missed her.

I had surgery two weeks ago, on December 27. On that morning, Daniel and I left the hotel and checked in at the neurosurgery department. We met with the PA (physician’s assistant) for Dr. Kaufmann and reviewed my case and the chosen procedure, a balloon compression rhizotomy. Then Andrea, the out-of-province liaison, escorted us to the day surgery department where I got into a gown and got hooked up to an IV. I was scheduled for surgery at 2:00. The hope was that they would then admit me to an inpatient bed after the surgery, which is what happened.

It turned out that Dr. Kaufmann’s previous surgery was completed faster than expected, so around noon they came to get me and away we went to the pre-surgical area.

Dr. Kaufmann introduced himself to me and then asked me to identify the side where I had pain. He used a marker on my face to indicate the right side. He then reviewed my case with both of us and talked thoroughly about the risks and the future. The best case would be that the pain relief would be good for 3-5 years. The worst case (about 1%) would be a constant pain condition known as anesthesia dolorosa, numbness with constant pain.

I asked Dr. Kaufmann to explain the pain to Daniel. He wanted to make sure that Daniel had read up on trigeminal neuralgia and that he really knew why we were there. Then he told him that he had been told that the pain is worse than a caesarian without anesthetic or having an arm ripped off in a car crash. That seemed to make an impression on Daniel.

I signed a consent form to proceed and they wheeled me into the chilly operating room. They gave me nice heated blankets to warm me up before they gave me the anesthetic.

When I woke up in the post-surgery area, I was out of pain and very happy. I stayed overnight on a ward and had a great time chatting with the nurses. Before we left the hospital, I was seen by the PA again as well as the neurosurgery fellow. We also dropped by the neurosurgery department to say thanks and good-bye to Andrea and Michelle, the nurse on Dr. Kaufmann’s team.

Since surgery, things have healed nicely. I can open my jaw well now and chew. I have a very mild achiness in my face and in that problem tooth #44. However, I can talk and eat and brush my teeth without any great discomfort or electricity shooting through my face and head. This means I can start living a bit more of a normal life by seeing people and being active again.

There is an interesting chapter about the procedure from Clinical Neurosurgery , written by neurosurgeon Jeffrey A Brown.

I have kept a thorough video log of the recovery from surgery and I’m pleased to see that today I’m looking a bit more like myself. According to the neurosurgeon, Dr. Kaufmann, about 15% of people who carry the herpes virus will have an outbreak after a balloon compression rhizotomy. I meant to get a prescription from him before I left but, in my excitement of being pain free, I forgot. Two days after the surgery, I had the warnings signs of an outbreak and it was really large — between my lip and my nose and on both my upper and lower lip. It’s just about completely healed now.

Daniel and I went to see a movie yesterday (Lincoln) and then went out for dinner at a nice little Lebanese restaurant. The food was really delicious. I’m able to chew now and each day gets a bit easier. I’m still a bit anxious/apprehensive about things in my mouth but I guess it’s understandable as I’ve been so careful for almost three years now.

I booked some follow-up appointments at the MS Clinic as I have to see a neuro-ophthalmologist and also get an MRI with contrast to see where the active lesions are.