By the time I signed up for this group I had learned quite a bit already. The things they sent helped to re-affirm that I understood my case and the options available to me. In fact, the doctors I met with, websites I visited all were saying almost exactly the same thing. There were subtle differences and new little pieces of information or perspectives to pick up here and there, but the main text was the same over and over again. This gives me confidence that I really do have a handle on what is happening to me and what my options are.
The ANA also has local support group meetings. There is a group that meets every other month at Stanford and at UCSF. I receive flyers in the mail and e-mails reminding me when these meetings are happening. Greg has been encouraging me to go from the start. I have been hesitant to go until I reached a point where I felt confident in my research and decisions. So, I kept these meetings in the back of my mind. One would come up and there would always be a conflict. They did not hold enough priority to me to make an extra effort to attend.
As I was in the throws of deciding when to schedule my surgery, an opportunity finally came up to go to an ANA support group meeting at Stanford. I had no excuse to not go, so I finally went. I had decided to go through with surgery by then, but had not scheduled it yet. I was now looking for reassurance that surgery was a good choice and added confidence that I was making the right choice. I knew it was time to look to people that had already been through this.
I counted about 10 patients at the meeting, all in various stages of treatment. Some were post-treatment, some were going through radiation right then, some were like me just before treatment and some were just trying to understand their new diagnosis. One lady in particular made the whole experience worth while. Lady C had just had translab surgery in August at UCSF. She is exactly my age and looked to be moving and functioning quite normal just 4 months post-op. Meeting her there gave me added confidence in scheduling my surgery.
Lady C and I have been e-mailing sporadically since then and had planned to meet up. As you know, I have a rather crazy schedule so planning something like this just kept getting pushed out further and further. Lady C happens to be unemployed right now and has been enjoying her unemployment with trips to Tahoe! So, just about when I posted this blog to facebook for the first time, I nudged her to meet up. She bravely came to my house with a plate of chocolate chip cookies in hand and experienced the chaos that is my Tuesday evening. Once I put the kids to bed, we had a wonderful talk and I am forever grateful for the time she took to come and visit. [More about this in the next post]
As the days tick down to my surgery, I am finding I am slowly accepting that I will be having this surgery. There are so many unknowns that weigh on my mind, but I think I can bucket them into two categories. First, what is going to happen to me? Second, how do I know I have chosen the right doctors?
The first question seems to be best answered by people that have been through surgery before. Of course talking to Lady C was the best analogy to what I will be going through. Another friend, after reading my blog, put me in touch with his friend, Mr. A, that also went through acoustic neuroma surgery. While his surgery was a different approach (middle fossa) and with a different practice, many things he told me were similar to Lady C's experience and strengthened my expectations. To Lady C and Mr. A, I thank you so much for taking the time to lend your support to an otherwise perfect stranger. I hope I will be able to pay your kindness forward to a future ANA patient. Your friendship and support are invaluable to me.
I have found also just talking to other people that have gone through traumatic health issues and here they are on the other side in a state of normalcy helps me believe I will be ok and can be normal after this. So, for all of my friends that have shared their history of surgery and illness, I thank you for sharing your stories. It is helpful to know what strong survivors I have for friends. You give me confidence that I too will come out on the other side of this just as feisty as ever.
The second big question is harder to answer. How do you know anyone is good at what they do? Well, by their reputation. Reviews and stars and whatever we can find on the internet give us a good recommendation for everything these days. But how do I know I have chosen the right ENT-neurosurgeon team for this? I have not yet found a website that ranks these particular teams, so I have to trust their reputation. From at least 4 different independent sources I have heard this team is at the top of their game: I could not be in better hands.
On particular source, Dr. C, whom I mentioned in an earlier post (What do you do about someone like Arnold?) is actually doing a fellowship at House Ear Clinic in Los Angeles. She encouraged me to consider going there for my treatment as she believes they are highly specialized exactly this type of treatment. As going to LA is just out of the question for me, she asked her colleagues about Dr. M and Dr. L:
I spoke with our senior neurosurgeon & neurotologist- they say dr M is the only neurosurgeon they would recommend in the Bay Area. They also say good things about dr L.To me, this was an extremely high recommendation.
I am still apprehensive, though. Am I concerned about the doctors? maybe. Concerned about the surgery? definitely. Will I get over this feeling? I do not think so. I have a feeling I will be rolling into surgery still apprehensive and fearful.
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