[Daisy21]

After suffering from TN for 4 years and going through a range of non-invasive and invasive interventions I have now been informed that I have anethesia dolorosa. it affects my left side of my face, the left side of my tongue my eyes my ears. it's painful to do anything...talk eat, smile and actually just about anything at all as the pain is constant and at quite a high level. Everyday and night i face excruciating pain and I feel sometimes like I'm going mad. The surgeon is quite disingenuous - just constantly saying give it time rather than just being honest with me..having read the posts in this forum i can see that this is a way of not taking responsibility for a condition I was not told about when I went for my MVD. I am considering legal action but the form I signed did say that my TN might get worse although it did not say that I could get a completely different condition.

I have been off work for 5 months now (since the last operation) and have tried just about everything to make the pain manageable. I'm currently talking to Cognitive Behavioral Therapy councilor, GP, neurological surgeon, Occupational Health guy, physio, my boss and have just been referred to the Chronic pain unit to learn relaxation techniques to see if that helps. I am so weary I'm fed up with talking about it, I hate what's happening and have thought quite seriously about how to end it all in the least painful way for my family members. I cannot bear to go back to work and face having to face the gauntlet of well wishers asking me how I'm feeling after such a long absence (selfish I know). I just wonder if anyone has successfully managed to be granted ill health retirement as a result of this condition. I live in the UK so maybe examples from here might be more relevant although I would welcome advice from anywhere in the world.