I started suffering from tn in 2008. A year ago, I had surgery to cut the artery that was wrapped around the trigeminal nerve. Gratefully, it was successful. However, I am still have some very slight pain. I feel that it is probably from the nerve healing. The artery actually left a 'dent' in the nerve. Is there a chance the artery will grow back and wind it's way around the nerve again? I don't think I could stand that horrible pain again. People don't understand because they look at you and don't see anything wrong. This is the first time I have seen posts from other people who have (had) tn.
That is so wonderful that the surgery worked! I have heard of people needed to have surgery more than once, but years later- hopefully that won't be the case with you. I have had TN only 10 months but because of the need for me to continuously increase meds and side effects to meds, my dr has mentioned surgery as future possibility.
I also have an auto immune disease that keeps me very ill and chronic pain from both neck and lower back problems that i need occasional nerve blocks and injections in spine. Even before TN I have needed to take major pain meds to try to control pain... But nothing is anywhere near to the pain of TN!!!! No one can understand how excruciating it is unless you know first hand!
Have you tried Carbatrol for your TN? It's a medication for seizures, but for some reasons (doctors don't know why) it works on this horrible pain. I took it, and also had to keep increasing the dose. By the time of my surgery, I was taking 8 - 200mg caps/day. It made me a little goofy. If you decide on surgery, be sure to get a surgeon that has done this many times. My surgeon has done 1,000 surgeries, so I felt very comfortable with him. Please keep me posted. The one thing I never had, and wanted to, was to meet another person with this horrible affliction. When I was diagnosed, was told that they call this the 'suicide pain'. After a few months, I understood why. I will pray for you that you make the right decision for yourself. Take care..............
Hi there! I don't think we have spoken before but I have a quick question for you...when you had this surgery, were you awake and is it painful? My neuro is about at the point that if ll the meds are not going work he is going to have to re sort to this surgery :( I am not looking forward to it and I have yet to discuss it anyone that has had it.
I would appreciate any info you can supply because at the rate things are going I am going to have to decide soon about having this or not.
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