Hi Linda S
MK referred to me in her post yesterday (or earlier today). I do check in, but no where near as often as I did when I was first diagnosed now 18 months ago.
My tumor is asymptomatic except for hearing loss (thinking about getting it tested again ... having hearing issues on one side has HUGE advantages when you have 4 small children and like sleeping, but not so good when your husband makes faces at you for the odd responses I can give during the loud daytime hours). I also have tinnitus which only creates issues in quiet environments, which I don't have very often - so doesn't really bother me. Thankfully, the random bouts of dizziness haven't created issues recently but I can stumble at times.
Just got back from a camping trip, play soccer with the kids, ride my bike, swim, run, chase etc. - life hasn't changed at all over the past 18 months (once I got over the initial shock of diagnosis)
As you can see from my tagline, it is also a very small tumor (no growth over three MRIs since November 2008), and is contained within the IAC so no threat to the brainstem or the facial nerve as I understand the anatomy of the nerves. I also have four young children, work full time and rarely sit down.
I am seen by Dr. Rutka (same as Anne Marie). I live in Toronto (west end) and workdown town so Toronto General is about as convenient as any hospital in the city. It is handy taking the subway to the doctor and the MRIs!
Dr. Rutka is a bit W&W guru with a fair bit of documented research behind him to support his opinion. I could have surgery or radiation and be booked now but was not encouraged by either Rutka, the neurosurgeon referral or the Gamma Knife Centre (Toronto Western). HOwever, obviously, if the tumor is affecting your day-to-day life (i.e. balance issues, facial nerve etc.), we aren't in the same bucket for W&W.
I do have some W&W research if you are interested (send me a PM with your email address, I will forward ... anyone else, also welcomed). One is a UK study on W&W and one is Rutka driven study in Toronto (I think it is now a 10 year review of a selection of W&W from his practice - but haven't reviewed the details in several months.)
The path you are on is highly personal. I have my views which you may not share. I trust the doctors I have met and strongly believe in the Toronto/Ontario system. I have NEVER, and more than likely will never, look for treatment for my AN outside of Toronto.
I chose to watch & wait with the expectation I could go 2, 5 or maybe 10+ years without treatment. I expect to lose any functional hearing during the W&W (and for all I know may have already made leaps towards that functional threshold ... functional hearing that is, not all hearing. My Pure Tone Average was almost 30 dbs on the tumor side.). I have no expectation (but it is possible) to keep hearing if I have surgery, and believe that I would lose functional hearing if I went the radiation route (just maybe not at treatment, but 3-7 years post radiation). If presented with the requirement to treat today, I would more than likely go with Rutka and surgery, and not radiation (my own issues with the safety LONG TERM 25+ years given my age (getting older every day at 38 years).
There you have it!
Good luck, a big welcome to this little club, PM if you want any research, apologies if my view isn't what you were looking for.
Regards,
Ann
