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10-22-2007, 03:53 PM | #2 | |||
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I understand completely what you are saying. I was diagnosed with
Trigeminal neuralgia about 15 yrs. ago. The Doctor put me on a low Dose of dilantan and Ametriptilene. It worked, so I thought that was that. In fact it took care of it for 10 yrs. I was happy about going on with my life and forgetting about those lightening strikes that hit my face out of the blue. It had scared me beyond words. Ten years went by and I continued taking my meds and go to my job as a nursing assistant on the medical floor of a busy hospital. During this time I met and married a wonderful man, whom I explained why I took my medicine.We were married for about 2 yrs. when our lives changed forever. We were shopping at the Mall in Joplin Mo. when I felt the first twinge in my face. Oh my god this couldn"t be. I stopped talking immediately. I could not go to work and my husband and I slept in our recliners. I couldn't go to our bed because the lightning bolts were hitting regularly.I just did not know what to do. I was so scared . The next day my husband made an appointment for me with a neuroligist. He got us in that same day. I was admitted to the hospital that evening. They started a morphine pump. For 9 days I was there. To this day I have no memory of that time. I was transfered to Kansas City to a neuroligist who could do a surgery called a Microvascular Decompression. I was hopeful about it but at the same time I was terrified. I was recovering in ICU when I felt a jolt in my face. The surgery FAILED. During the next weeks I was like a zombe. I wrote everything down as I was too scared to speak. I would lay on one side on a air mattress in the floor. I dreaded moving if I needed the bathroom. Dr. Kaufman gave us another option. I could have a Balloon Decompression. They stick a needle in your cheek to the base of the skull and try to destroy the nerve. The first one didn't work, the second one didn't work and the third one did not work. I was losing weight as I couldn't eat and also dehydrated. This was the darkest time in my life. My husband would sit by my side and say a prayer to give us strength and guide us to a solution. I don't know how it was decided, but we were headed to Mayo Clinic in Rochester Minn. I had to lay down in the back seat. I rode that way all the way there so scared to move. We went through a snow storm in DesMoines so we had to travel slowly. It seemed like a life time to get there. Finally we were at the emergency room at St.Marys hospital. which is a part of Mayo.I was quickly admitted. I had about 4 or 5 nurses and maybe 2 doctors gathered around me. The next morning, I was in surgery! Dr. Pollack had a plan to parcially cut the trigeminal nerve. It also failed I was so devistated. I truely had a plan of my own by now and it was the only way out of the hell I was going through. I knew I could get out of the misery by taking my life. It seemed that I almost had a peace in my self by knowing there was a way out. After this brain surgery I was put in the pain unit. The nurse kept reminding to breath because the medicine was slowing everything down so much. I did not care if I breathed or not. My husband was always at my side through everything reminding me he loved me so much. Tears would come to my eyes as I looked at him. He knew I loved him too. He was my rock and he didn't ever complain about those nights when I kept him awake just so I knew he was there. He never faltered with his love and devotion. Three days later I was back in surgery. This was the last option I was given. To sever the trigeminal nerve completely. I don't remember anything about it as I was sedated. I was told that this would make the left side of my face numb. It did. The operation finally took hold a few days later, because the pain stopped. When they wanted me to take a shower a couple days later and it would be my first time up, my head was so dizzy. The room spinned around me. I was released a couple weeks later. My strength took awhile to come back. The first night home I felt a burning in my face. It continued the next few days and was turning into actual pain. We called Dr. Pollacks office and we asked about this. They said it might continue or maybe it wouldn"t. Not a real good answer. This is five years later and the pain has been with me all this time. I found out that it actually has a name. Anesthesia Delorosa. It is a dreaded complication of a microvascular Decompression. Now I hurt 24/7 with a different kind of pain. It gets severe sometimes It is not the lightening bolts that hit before, It is not a scary pain, like the trigeminal neuralgia but none the less, PAIN. I take around 20 some medications every day. I lost my job that I loved so much. I get a disability check every month. I don't drive anymore. I did get off the narcotics I was taking. I take Neurontin, Amytriptine, Lyrica, Hydroxizine, paroxicam, peroxitine. I developed restless leg syndrome, so for that I take Requip. I also see a Psycolagist once a month to deal with evrything that has happened. We do a kind of self hypnosis relaxation tapes. I can say that I am happy for the most part. I live each day the best that I can. My husband trys very hard to make me smile, actually he doesn't have to try that hard. He has been by my side every step of this journey, not behind me and not ahead of me., but right beside me. I know how devastating this condition can be and I pray that somehow everything will get better for you. Sincerely, Patti Hall |
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