When I was 15 I was diagnosed with trigeminal neuralgia and a very unique case involving all three branches of the nerve and over the last ten years I have had 15 neurosurgeries (some for trigeminal the rest from complications) I have had 2 strokes been blind and deaf at the same time and developed a very rare associated disorder called trigeminal trophic syndrome. It is now eating away the tissue on the right side of my face. The right side of my nose is missing and lip and this all started with trigeminal neuralgia. There are only about 100 cases of Trigeminal Trophic Syndrome ever recorded and when I saw your article for trigeminal neuralgia i thought I would write in! I am desperate to get this information out there! I truly feel that there are more cases that have been reported but people do not know about it. It took me 7 years and a lot of effort and resources to find a doctor who had seen this please help me spread the word. I am 25 now but being 15 at the age of my trigeminal neuralgia diagnosis I was very young and it was very rare and it is even more rare for me to develop this! Please look at this story this only scratches the surface of my story and I would love to get it out there!
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