My Sister's Story
by Robyn Reining I can remember the first time I got an electric like shock. I was completely blinded and almost fell over. I could not imagine what it was. I had a recent root canal and figured it had to be from that but several trips to the dentist revealed it was not. I finally went to the doctor and told her I have a pain from here to here. Right away she told me I had trigeminal neuralgia. I asked her to write it down because I had never heard of it. I went home and looked it up and decided that was not what I had. It is mostly found in the elderly, I am only 36. So I went for a second opinion and got the same diagnosis. I am not sure if I didn't believe the first doctor or just didn't want to. The idea of having this awful disease that is so painful and has no cure was just too much. After my diagnosis I was caught up in a whirlwind of medication and doctors. The first set of medications did nothing for me so they changed it. The new meds made me out of it so they changed those. I think I tried every medication out there. Nothing seemed to help. I then just resolved to being out of it. The medication didn't work but they did make me so "stoned" that I didn't care if I was in pain. I don't think I even realized I was in pain. I do not remember those three months just what other people tell me. I could not drive, I walked into walls, I could not find my mouth when I was trying to eat. The kids still talk about the one time we thought it was a good idea to go out to eat. We walked into the restaurant and I walked square into a couple's table while they we eating. After my family sat me down they went up to the buffet to get me food. My husband brought me back a plate of food and went back up to get his own. When everyone got back I had mashed potatoes all over my face from missing my mouth and I was hysterical crying. We never went out to eat again. Three months after my diagnosis and three neurologists later I was given a choice of surgeries. I didn't know at that time that I had options other than surgery. I decided to have the gamma knife since there I was told there was no risk and it was the least invasive. While screwing the frame to head they hit a nerve, more pain. After the surgery I was in pain from the disease, pain from the frame, and sick from the sedation. I was sorry I did it. Three months after the surgery though I was pain free! The pain was gone for a whole year! Unfortunately I needed more dental work. The pain came back after that and it was just as bad as the first time. I decided to have a second gamma knife surgery but before I did I had all my teeth on my left side root canaled and capped. That way after the surgery worked the pain would not return. I had the surgery, this time they did not hit the nerve, and was pain free three months later but there was a catch. I was numb. I could not feel the whole left side of head! By the time I got used to the idea of no feeling, six whole days, my face started to burn. It was a cold, painful burn. I couldn't figure it out. I could not feel my face but it was painful. I thought I was going crazy! This is where the story continues... |
My Sister's Pain
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