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11-04-2016, 06:39 PM | #1 | |||
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From what I am reading, it sounds like you have typical TN? That's the type that has random SHARP ELECTRICAL pains shooting thru the side of your face, lips, tongue etc... Mine was on the right side. I could actually feel the nerve getting hyperactive (tingling) a few seconds before and after an attack. My pain level was off the charts during an attack and the longest one I had was about 30 seconds which doesn't sound like a long time but it is. I'm male and I had my first attack right after I turned 56. (TN is more common in women than men) The attacks were so severe and random that I had to quit driving and working. After a year of trying a whole bunch of meds with no success, (I was a walking zombie) my neuro referred me to a neuro surgeon. During my first visit with them, they went thru the list of meds I was taking and said that if the meds were not working, I needed surgery. I had MVD surgery 2 weeks later and it changed my life. (I had attempted suicide during that god awful year) Surgery changed my life back to where it was before I started having the attacks. It was so nice to no longer have to take any meds and be back to a normal human being with a normal life. That was 6 years ago. My TN was caused by a blood vessel that runs parallel to the TN nerve that had worn thru the protective outer layer of the nerve. This did not show up on the MRI but the surgeon said that's not unusual. Every time the blood vessel touched the nerve BAM I would have an attack. Normal time for MVD surgery is roughly about 2 hours but I was in surgery for 6 hours. Surgeon stated that there were multiple blood vessels "tangled" (his word) up with the nerve. Having the MVD surgery is one of the best things I've ever done. I did have high blood pressure for about 20 years prior to surgery and they thought that might have contributed to the problem. (rubbing the nerve) I faithfully keep my blood pressure under control now. That was 6 years ago and I'm still attack free..... What frustrated me the most was the lack of knowledge that doctors have about TN. I even had an ER doctor ask me what TN was! Not that they can do anything for you except fill you up with pain medicine. I don't know how many times I was in the ER over the year before surgery. I went thru many doctors until I found one that actually knew what he was talking about. Keep your chin up and don't give up until you get the help you need. It is out there somewhere. Ken
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