I'll elaborate a little. I know everyone's experience is different, yada yada yada... But, just for those who want a subjective patient's view I have an opinion on Hopkins. About 1 year before my diagnosis, a co worker was diagnosed with a fairley large AN. He went to Hopkins, as many of us here in MD do, because of the reputation. Without going into to too much detail, because of post-op medication errors, he almost didn't make it out of Hopkins. When he did come home he was left with many of the problems we hope to avoid, severe facial paralysis, swallowing problems, etc. About 1 year later I was diagnosed with a 2.5cm (+-) AN. (the odds of this happening are not lost on me) Figuring his case was an anomoly and again relying on other docs referrals I made the mistake of going to Hopkins. I considered radiation and surgery and interviewed docs from both departments. I've had better experiences buying a used car. Again without boring you with the details, the radiation docs said the surgeons would scar me for life and the surgeons said the radiation docs would give me brain cancer. I began to have one moment of clarity...these AN surgeries are a cash cow. Fairly safe to perform, but very expensive. I elected surgery mainly because of fear of the "C" word. I guess the surgeons knew this was a slam dunk. Anyway, my results were the same: total hearing loss on the right side, right side paralysis...you know the drill. While in the elevator one day after visiting me, my wife talked to the husband of another AN patient at Hopkins. He told her his wife had had surgery the same day I did and had completely lost her ability to swallow post op. Aftercare from the dept of neurosurgery was an interesting experience. A couple enlightening anecdotes follow. The dept. head advised me the only solution to my inability to close my right eye was stiching the eye shut. He then laughed when I said I had discovered that wearing swim goggles in the shower kept shampoo out of my eyes. He seemed shocked by the results and had no real solutions to offer. About 1 year later (2004), after doing research on my own, much of it on the old ANA site, I came up with some ideas on my own. I had an Opthomoligist insert a gold weight in my eyelid and tighten up the lower eyelid. I went to the University of MD Hospital in Balt. where I had a great surgeon from the Oto. Dept perform a hypoglossal nerve graft and a facial sling. These have given me some slight movement, much more tone and an ability to close my eye. I am aware that these experiences are subjective and there are probably Hopkins success stories out there. I just haven't heard them. That's about it.
