I have been going through various tests to see if the cancer has spread. I recently met with the Cancer Assessment Team, surgeon, resident and nurse. I told them all I had TN. The nurse acknowledged it and carried on. The Surgeon acknowledged it and took notes and carried on. The resident acknowledges it, made a sympathetic face and said, when I asked about my shoulder swelling and becoming anvil hard, that it had nothing to do with TN. I moved on.
Last night I had an MRI and mentioned to the tech and the doctor there that I had TN. I wanted earplugs instead of headphones, don't touch my face, and lift my head higher if you can please. they both said "I am so sorry, I'll be careful", and made sympathetic noises. I said if you see a compression in there please let me know! tech said "I don't think I would know what to look for".
During the MRI I quickly regretted the earplugs. I felt like crying, I knew some pain would be coming that night.
When the MRI was done I did have some low level pain, tech and doc said "let us help you", I said "no, no, I will be ok, it will stop". After a minute or two it did. Doc asked, "why don't I have the Gamma treatment?" I said, "Oh no, it will fudge up my chance of having a successful MVD. I wanted to find a compression, I am at the end of the five year mark. They both asked, "what is MVD?' I garbled out the words and they were both surprised there was such a thing! Had never heard of it. Doc said , "you must be taking some kind of med?" I said, "Yes, Pregabalin, it is helping".
Tech said and doc agreed, "I am seeing a lot more people with TN, wonder why that is?" I said, "probably because we have learned that we have to advocate for ourselves and not stay home suffering anymore. We are researching on our own and pushing to get some sort of help. We try to create awareness of this disease and break all the old myths surrounding it.
They asked if this MRI was for the TN and I said no, the cancer, that I had one already. They bot said oh, you have to have a specific MRI for TN, you need another. I said I know, Fresca MRI and they laughed. (Don't you love having TN!)
I almost felt like clapping, I was so happy to see medical staff so interested to learn and listening to a patient. wish there was more time but there were people wall to wall waiting their turn. As I left I heard them continuing the conversation.
Of course I woke at 3:30 am with horrible pain that started deep down in my ear. Quickly jumped to all three branches. Oragel, rice bag, hot drink, thinking OH No! Pills not working anymore. Lucky me It soon eased and I was able to sleep. This morning it is pretty sore around the back of the ear lobe and a bit below. Inside ear feels like a mild earache.
Another test this afternoon which I don't feel like going to but will. Might as well get them done.
It's strange, I have cancer and I am only obsessed with the TN, what a horrible disease.