Thanks for the support

I went to my third ANA D.C.-area support group meeting this past Saturday. The date was exactly three months post-surgery, and the people at the meeting were quite amazed with my progress. It was nice to have come full circle, from being newly diagnosed at the first meeting to being a week away from surgery at the second meeting to being pretty much fully recovered at the third meeting. I am planning to continue to go to most meetings in the future, at least for awhile, because I think it's helpful for newly diagnosed people to hear from others who've been through treatment and have only relatively minor issues.

A group of supporters

Today was my second Acoustic Neuroma Association D.C.-area support group meeting. We didn't have a speaker this time and instead went around the circle to tell everyone about ourselves. There were probably between 5 and 10 people who also had Dr. T and went to Hopkins, and they all told me that I will be in good hands. It's nice to know that all of these other people have gone through a similar situation and that they've been able to deal with things well. They asked me to let them know how things go; our next meeting will be in May.

(In the interest of full disclosure, this post was actually written on 2/3/09.)

Need more advice

I had been thinking about Georgetown vs. House for a week when I decided to ask the folks on the forum for advice. They agreed with my inclination to get another opinion at Johns Hopkins and shared with me their stories of how they decided on treatment. It was very helpful to hear from everybody and gave me confidence to keep researching.

(In the interest of full disclosure, this post was actually written on 1/30/09.)

Nice to meet you

I finally posted for the first time today on the ANA discussion forum. I wanted to introduce myself and ask for advice about talking to doctors.

(In the interest of full disclosure, this post was actually written on 1/30/09.)

I thought this condition was rare!

I went to the D.C.-area ANA support group meeting today. Our speaker was a doctor from a hospital in Virginia who runs a CyberKnife machine. He told us about the history of radiosurgery, from the early days of single-session Gamma Knife to the current way of using fractionated therapy with the CyberKnife. There were around 25-30 people in attendance at the meeting, many of whom had surgery throughout the years. Some people had radiation as well. A few people were watch & waiters, and a few others were like me who planned to do something in the near future but were still deciding the what and who.

One of the main things I got out the meeting was that radiation seemed like a viable alternative to surgery, and that if I had radiation first, I might be able to "buy some time" before I needed to have riskier surgery. The surgeons I had spoken with so far didn't offer radiation as a choice to me nor offer a thorough explanation of why. The other thing I learned was that the House Ear Clinic in LA is really on top of things in the AN world and that it would be worth contacting them for more info.

(In the interest of full disclosure, this post was actually written on 1/29/09.)