People in BC with TN are suffering
I’ve been thinking a lot lately about the many challenges people encounter when they have the great misfortune of experiencing the facial pain of trigeminal neuralgia. A few times each month I am contacted by people who are experiencing the pain of MS-related TN and looking for help. Some of these contacts are made through the TNAC (Trigeminal Neuralgia Association of Canada) and others find me directly through my website/blog.
I listen to the stories of the difficulty in finding medical support as so few people in the system know anything about TN. And even if they do, they don’t really understand how painful it is. It disappoints me whenever I encounter a professional working with people who have MS who don’t get it at all. I remember being at the MS Clinic and getting information from a nurse about drug therapies. When I mentioned the TN to her she said that she had heard it was like a bad toothache. My eyes popped out of my head when she said that and I broke down crying right there, telling her it wasn’t just a toothache — it was like being electrocuted in my head. She looked surprised but I was really angry that she was so quick to minimize it.
Another time I was at a conference hosted by the Lower Mainland Chapter of the MS Society. One of the guest speakers was a doctor who was a physiatrist, a specialist in physical medicine and rehabilitation. He mentioned trigeminal neuralgia in his description of the neuropathic pain that a person with MS may experience. He said it was like a burning in the face. Oh, is that all, I thought to myself. As the room was full and I was in the back, I opted to write out my feedback to him and asked him to make sure he learns a bit more about TN as I was really quite offended.
Then there was the time that I visited another friend with TN in the hospital. I spoke to his nurse about his TN. She asked me to spell “trigeminal” for her. I wondered how she managed to become a nurse without learning the names of the 12 cranial nerves.
So . . . if these local health professionals and experts are in the position to disseminate information about TN and to “educate” people about it, is there any wonder that people in the system who have many other things to know and learn about don’t know enough about it to be empathetic? If health professionals don’t understand the intensity of the pain, they will be treated with “callous neglect” as one of my TN friends describes it. And we end up being “treated” for “depression” and “anxiety” — who wouldn’t be depressed or anxious from the pain and neglect and sometimes abuse as I experienced?
I have been in conversation with a couple of people at the national office of the MS Society as I think we need to raise the level of conversation and get people some understanding and also some help. Fortunately, it looks like they will be doing a series on pain and my story will be featured in the first article.
I would also really like it if we had a national centre of excellence for TN. I am consistently referring people to Winnipeg and Dr. Kaufmann’s team as it is the only setting that treated me like a full human being. Isn’t that how we all want to be treated when we need help?
