Roberta BerkMy Gamma Knife Aftermath |
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I had a mysterious pain in my lower left jaw for four long years. After seeing many "specialists" with their misdiagnoses, I finally found www.endthepain.org on the web. There I discovered that I had Trigeminal Neuralgia. My mother had Tic Douloureux for 30 years. I mentioned her condition to all of the "specialists" I saw, which included a dentist, oral surgeon, ENT specialist, cardiologist, and neurologist, and asked them if they thought that I had TN. They all said, "No, it does not run in families!" But I witnessed my mom suffer all those years. I knew just how painful it was. In 2006 I elected to have the Gamma Knife Surgery for the left side of my lower jaw with a very prestigious surgeon at South Nassau Hospital in Long Island, NY. I chose this procedure because it was supposed to be non-invasive, have the least side effects, and especially have no chance of anesthesia dolorosa. Sounded good! That's what the books and the websites said, so I felt at ease going ahead with my decision. My Gamma Knife Day was November 2, 2006, the day before my birthday. I thought I was giving myself a birthday present, one of being free of pain. I was completely out of it during the procedure. I remembered nothing! Everyone I spoke to afterwards who had the GK remembered everything. When it was over the electric shocks were gone, which was a blessing, but I certainly didn't know what I was in for. Once the anesthesia from the procedure wore off the pain started, and it was worse than before. I had to call my surgeon on his beeper even though it was Sunday, because the pain was so bad. Now I needed even higher dosages of Trileptal and Lamital. I chose the GK to get off the medications, and here I was back on them again. How depressing! The severe pain finally started diminishing, but it took over 7 weeks before it became mild. My fiancé Sal and I travel by car to Key West for the winter months. Since the pain was now under control, I thought I was safe. Big mistake! While driving down, I got a severe rash from the Lamital that sent us to the ER in NC in the middle of the night. That was the first upset, which was on December 29, 2006. After that the rest of the trip was relatively quiet. But in March 2007, the Ides of March were upon us. March 3rd my left nostril felt strange and numb. By March 9th my eye felt weird like pins and needles were going through it. Now I really got scared. I was a graphic artistic. I needed my eyes! I immediately called my surgeon in NY on his beeper. He told me to go to the nearest Eye Hospital to have my eye checked. We had to travel 4 hours to get to the Bascom Palmer Eye Institute in Miami, FL. The good news was that my eye was normal, but the pins and needles and the shooting pain that I was feeling were side effects of the Gamma Knife. By April 1, 2007, half of my face was numb from my chin to my forehead. Half of my lips had constant pins and needles; my cheek felt thick and swollen, like a monster dwelt within; my nose felt like it had frostbite; my teeth and gums felt frozen and numb with Novocain; and my eye hurt and had constant pressure, plus at times it felt like shooting pain was going through it. So this is Non-Invasive Surgery, huh! Once again I called my surgeon in NY to ask him if other patients had side effects like I did. He told me I was the only one! How could I be the only one, if he had such a large practice? I immediately called the Trigeminal Neuralgia Association. There I had always gotten straight answers. I described my symptoms and was told to my horror that I had all the symptoms of anesthesia dolorosa. The TNA sent me all the information I needed to educate myself on the subject of anesthesia dolorosa. When I came back to NY, I immediately went to see a neurologist who specializes in TN and AD. My fears were confirmed! I needed so much to connect with others, because I felt so alone. In the information package from TNA was an Anesthesia Dolorosa Email Networking List. Oh, I was so excited! At last I could connect with others. My excitement, however, was short lived. The list was outdated. I asked TNA if I update the list and rename it. It became AlwaysHopeful333@msn.com. We started out with 3 people, plus myself, and now, in less than a year, we are all over this beautiful country, the UK, and Australia. At the present time, I still have all the pain and symptoms of AD. I am also seeing a neuro-ophthalmologist who is treating me with Restasis for extreme dry eye to help relieve the pain and pressure I feel in my left eye. He also keeps checking my left eyelid because it doesn't close all the way as it should. My neurologist has prescribed Gabapentin, Topamax, Cymbalta and Lidocaine 8% Intranasal Spray. Unfortunately, the medication is still needed at high doses to make my life as comfortable as possible. What helps me tremendously is connecting with the wonderful people in my group who understand what it is like to live each day with TN or AD and still have a positive outlook. Connecting with others in pain often helps ease one's own suffering. The purpose of AlwayHopeful333 is to offer hope, inspiration, and comfort, plus information. The group members feel that people often have a problem understanding TN, because it is rare and not visible. People think they are making it up for “attention.” Who in their right mind would ever want to do that? Everyone who has come into our group has had the same desire. They did not want to be alone. No one with any type of neuropathic facial pain ever has to feel that way again! Please come and join us. Sincerely, Roberta Berk "Remember, Always Believe in Miracles" Posted 7-07-08 |
