HI again Monie,
Not nosy at all. I don't mind. I'm 46, married (partner of 22 years), no kids, working as self-employed graphic designer and lecturing graphic design too. Been living here since '84.
When I was diagnosed with my AN I had two choices, wait and see, or surgery. Radiosurgery is not available in this country for benign tumours, for whatever reason. So I picked wait and see as suggested by my then neurosurgeon. His idea was to postpone such a major surgery until it was really ncessary. Good thinking I thought at the time. I immediately started looking into this AN, as I couldn't get much information from the medical profession at all. I soon discovered other treatment options. I have to say at that stage I was still more interested in surgery, the idea of getting my head 'nuked' wasn't something I really felt comfortable with.
The more I looked into things and information I got, the clearer things became, and the more difficult things became too. Making a choice is one of the hardest aspects of this whole saga. Anyway, as I went along past the first six months after diagnosis, I started having some more acute symptoms and new ones too, loss of taste, louder tinnitus, and numbeness in my face. At this stage I thought somethig was happening. I didn't get much satisfaction form my docs then, so I started looking around for other options. By this stage I felt a lot more comfortable with the radiosurgical route. Mainly because of the lessened risks, and also because I didn't really like the idea of sombody rooting aroudn my brain with metal tools. Sorry, sounds crude I know, but that was my frame of mind at the time. Anyway, I had lost all faith in my medical team here, and as it's the only one in the country performing that surgery, I decided it was time to take my medical matters in my own hands. So, I contacted various radiosurgical facilities in the US, sent over my files (what I could get hold of) to Stanford in California for CK assessment. Got accepted and I made the arrangements.
Dec 04 was the treatment time. Went over, got treated, had a long holiday, came back and next phase started, recovery. I worked from the time I came back, but had to take a big step back from it all. I reduced my college work to purely lecturing, no meetings no admin. Cognitive problems were showing themselves big time. My own freelance work suffered immensly during all this, loosing most of my clients. (not that I was too sorry to see some of them go
) Slowly recovery progressed and things improved. At around the 10 month mark suddenly things took a dramatic turn for the better, with energy levels coming back to near 'normal'. I went back to my full college work duties and have been building up my freelance work too since then. Now, I'm two years post treatment. Feeling good, latest MRI shows tumour is continuing to die and it's even started shrinking. A few pains on and off from the shrinking process or from the scar tissue forming, but nothing much else now. Huge fatigue has more or less vanished completely, unless I do too much. Too much being A LOT these days.
I have a fairly quiet life, having opted for keeping my stress levels to a minimum and not having kids. Slow is my motto, and enjoy life as much as possible. Lots of travelling and seeing things. I'm lucky, I have the time to do all that, and a partner that also works in education, so we both have the same holidays.
By the way, if you want to read more about it all, look at my blog too, it started at the time of diagnosis.
Sorry for any typos in the above, haven't quite managed to fix the problem of dyslexic typing!
Send me an e-mail if you want to discuss more or want to have a chat. Or jsut ask me here, whichever suits you better. I'm also on MSN.
Hope this helps a little. Ciao, Lorenzo
