Monday, February 13, 2012

Support Group

Co-facilitating the San Diego Acoustic Neuroma Association support group has turned out to be a very satisfying experience. I volunteered to help out as the group is being run by a wonderful woman who herself is not an AN sufferer. She is a therapist who took over the group which was suddenly without leadership. It's been a delight to work with her and to gradually begin to be of value to her and the group.
I really didn't think I'd get that much out of a support group and went to the first few meetings as a total skeptic. I had made my choice, had my treatment and was going on, pretty well dealing with the attendant problems. What could a group do for me? Well, turns out, quite a bit. There's value in sharing the same space with people similarly afflicted and I can't explain why. Sort of like belonging to a club and being accepted without conditions by your fellows. 

On Saturday, we had a great speaker at our meeting, one Dr. Chen who has so many titles, it's kind of mind-boggling that he would even deign to speak to our small group. There's never a very
large congregation of AN sufferers in one spot as the tumor is rare - 1 in 100,000 so they never get a huge audience. One of his many distinctions is that he treated Ted Kennedy with his brain tumor.

Dr. Chen is a physician who communicates in language everybody understood; who boiled things down to a manageable essence; who truly wanted to be understood for a change. Why this simple concept is so difficult for physicians? I understand the difficulty to some degree but most of these doctors are so incredibly smart and so capable that one would think they would figure out a way of all things, to simply communicate with their patients. This doctor was also very frank...he said, "You know I can have a consultation with you and get maybe $80 an hour for the time during which I recommend you have some kind of treatment - some surgical and some non-surgical. Remember that if it's surgical I'll get $20,000 an hour for doing the surgery and furthermore for us neurosurgeons, it's FUN. What am I inclined to recommend?" Wow, I've never heard a surgeon admit publicly to this kind of mercenary personal bias existing in the system but of course it's there - our whole medical system thrives on it  and also suffers from it. Dr. Chen doesn't have an answer for the ideal system, but he does recognize the adverse effect this motive can have on medical care and warned us about it.
I had one recent experience with a neurosurgeon who was pushing the BAHA hearing system on me...the surgery to implant a bone anchor is worth a cool $30,000 for the surgeon and it's really, for them, easy. Just a little drilling into the skull - a minor anesthesia experience, kind of like for colonoscopy.  I didn't like the guy's attitude and I could almost hear the cash register ringing in his brain. Passed on that one.
I learn something valuable at every meeting. 


  1. One of the old owners of Clementines in Fallbrook by the name of Dan had similar problems. He opted for the surgery and it ultimately served him well.

  2. Interesting. It's supposed to be a rare tumor but I keep hearing about people in Fallbrook with one. So far, I've heard of or met 4 people - with Dan added, we're up to five.

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