Psychdisco: Hey!
I did suffer MAJOR headaches for years before my AN was found, in fact my only three physical "symptoms" of my AN were 1. headaches 2. insomnia 3. intermittent numbness and tingling of my face that became constant just shortly before diagnosis (it was with this happening that I got properly assessed/tested and the AN found)...those were my concerns for a few years prior to diagnoses and the neurologist I initially saw did not see need to look for a tumor, that and adding to it that I was "too young" to have a tumor. When the numbness and tingling became constant I was sent to another neurologist and both this doctor and my GP thought they were going to find I had MS, even though that didn't "fit" due to my age and having not yet had children.....low and behold it was during the nerve conduction studies I was told my auditory nerve was not functioning properly and I had hearing loss, something I was unaware of, I went on to have a CT of the head that same day and they found a very large AN!
My point is this, many of the doctor's involved with AN patients seems to feel that AN's do not cause pain, I disagree!
As far as post op pain I too suffer this, it is different than pre-op but in the initial few years just as painful and was very difficult to deal with. As the years have gone on I guess one of two things have happened 1. the pain has decreased or 2. my body has learned to "turn it off" and I say that as mos days if I don't stop and think about it I do not notice this pain, that's as long as I don't stop to think about it but if I do the pain is here every day. I still have days when the pain is significant.....I cope with it by resting and using plain Tylenol. There was a time when I tried the various options given to migraine suffers as preventative medications (as you mention you are taking/have taken) however I was unable to tolerate them and couldn't continue with them.
Like yourself I was young when this started, I was diagnosed and had my first surgery when I was 23, I indeed also came away from it feeling physically much older than I was, and continue to have this today .....my doctor identified this to be a true feeling and said something to the effect that having such a surgery "ages the body" or something like that.
I don't know how long your are post op. I know I found that first "years" the most difficult, I am now 23 years post op. Over time you may find what works for you to cope with the pain, I used to just go to bed and stay there until it decreased, once I had kids I couldn't do that anymore and since they I've just be "stumbling" through it.
Rest assured you are not alone in your experience.
Kathleen
