Things

Not a very creative title, is it? Too bad. I'm tired and just couldn't come up with anything more creative at the moment. I reserve the right to change it later ... or never ... or whatever!

It's been a brain-tumor themed week. Saturday I joined the NY/NJ group in NYC for our now twice-annual brunch at Brendan's. The group was a bit smaller than last time - only about 8 of us - but you would never have known that from the noise we created. Pretty funny when a group of mostly SSD people get together and all start talking at once! Last time we met, Neal was only a few weeks from his surgery, so it was great to see him now at several months post surgery. He looks great - great big smile! In fact, as I looked around

the table, I realized how terrific the whole bunch looks. Well, heck, don't take my word for it - here's a picture! Mike and his wife are on the far left - Mike's a Wait and Watch and goes to the same docs as me. That's me in the orange shirt. Behind me is Joe, also a Golfinos/Roland patient and had surgery in Jan 07. Then Wendy and Neal (July 08 and Feb 09, respectively.) Catherine, Nancy, and Eve weren't able to make this lunch, but we hope they'll be around for the next one.

Monday I had my visit with Dr Roland for follow up on my facial nerve function. As I approach the 18 month mark (November) it's time to start talking about what's next. I've regained probably about 80% of my nerve function, but progress has been at pretty much of a standstill for the last few months. I still have hyperactive muscles in my right cheek which causes my upper lip to pull up - this has been like this for over six months, so it probably won't go away without some help. Right eye still blinks less often than left, and no sign of tears. Lower lip just isn't cooperating and is still pretty useless.

So, when I go back in December we'll start talking about medical botox (freaks me out) to relax the muscle in my cheek, which will allow my mouth to look more normal at rest. I can also consider a shot to the chin which would get rid of the spontaneous dimpling that occurs when I smile or blink (some synkinesis, probaby). He said that the results usually last about six months and frequently need to be repeated multiple times for persistent facial issues.

The lower lip is a bit more of a challenge and if it doesn't come back I can consider surgery to graft some nerve. Dr. R suggested that I use the time at the Acoustic Neuroma symposium (Chicago in August) to investigate some of the newer treatments. This will give he and I much to discuss when I see him in December.

I am feeling some conflicting emotions at this point. Dr. Roland says that I am in the small minority of patients with a tumor in this size range who have long term facial issues (something like 5%). He bases this on his own stats in doing this surgery for so many years. I kind of wish I wasn't in this elite little percentage, but I am also reconciled to it for the most part. I am so used to using drops all day, every day, that I don't give it alot of thought. Non moving eye-brow? Not a big deal and I honestly really don't care about it. Lip/mouth? Well, that's more of a concern to me. My question for myself - is it enough of a concern to swallow my fear about botox injections? Would I consider a surgery to correct the lower lip function? Hm, something to ponder. I will spend the next four or five months reading and researching and talking to people. There is certainly no rush.

Any comments or experiences that you'd care to share with me?