EnglishDave - thanks so much for replying. I'm in the UK too and had my MRI done at Salford Royal Hospital. It's a really tough decision and I know exactly where you're coming from. For such invasive surgery with horrible potential risks it seems madness to have it when the pain is low and the meds work.

However, I developed a resistance quickly to the first meds (gapapentin) I tried and I've been told that it can also happen that the other meds will be become less effective over time. I've also noticed that when I up the dose of the carbamazepine the side effects increase. They make me feel quite depressed and I don't relish the thought of having to take a higher dose. The attacks have been coming closer together and the last one lasted months with very severe, almost constant pain.

Having spoken to the surgeon's secretary and to the specialist nurse they have both said they the surgeon wouldn't have a problem doing the operation when I'm pain and meds free. The nurse agreed it's a difficult decision but said that I had a chance, while I'm in good health and the timing is good (work, family etc), to get it over with now and move on with my life. She also said though that they would be happy to keep in touch with me and monitor it and I could have it at a later date. I'm meeting with the surgeon next week to discuss it further and hopefully will be able to make a decision one way or the other.

You mention you don't have the option of surgery, what is your situation?