ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: SGBlons on January 20, 2012, 07:11:18 pm
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I had my consultation yesterday at the Mayo Clinic with Dr. Michael Link, neurosurgeon. It was a very positive experience. Most importantly, I feel complete confidence in Dr. Link based on both his considerable experience treating ANs and his direct and warm manner. After reviewing my MRI he said that based on the size of the tumor (5-7mm) and my age (68) I could freely choose any of the three options: surgery (it would be retrosigmoid), radiation (it would be Gamma-Knife) or wait and watch. So I have decided to wait for now, until June when we will do a 6-month follow up MRI. And when the time comes for treatment, I will have radiation not surgery, which is what I have been hoping I could do.
It feels very good to have some things settled and to be able to stop obsessing about this for a while. I am going to at least look into the option of Cyber-Knife, but I'm already pretty attached to Dr. Link.
One other thing has become clear to me during these six weeks since my AN was discovered. From the reading I have done on this site, especially after studying the survey, I am expecting hearing in my AN ear to worsen no matter what I do and eventually be gone completely. Dr. Link concurred with this assessment. It seems only a tiny fraction of us are lucky enough to retain useful hearing indefinitely. Correct me if you think I'm mistaken.
I'm hoping that the rate of hearing loss might be slower while I'm waiting and watching. But I've pretty much resigned myself to single-sided deafness down the road. As a musician that upset me for a while. But I have learned that SSD has not stopped musicians from playing.
Some of the other possible AN complications seem like they would be a bigger challenge, but they also seem to be less common. So I'm not going to worry about them now.
After this post I'm moving to the watch and wait area. I encourage all newbies to take this one day at a time, get the best information you can, don't assume your story will be like any you read, and trust you feelings.
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Steve ~
Thanks for the update. It appears as if you have a doctor that you have confidence in, which is crucial. The fact that you have all 3 options open is excellent but your decision to eventually go with CK has to be a relief, as you noted. For now, enjoy the respite from decisions and of course, keep us abreast of any developments. Thanks.
Jim
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Approximately 5 years ago at around 58 with a 1cm AN I had the same choices... I`ve picked the same option W+W and haven`t looked back. Everything is at least status quo, if not even better at this time. There are some major adjustments in lifestyle which you can follow in the W+W brigade posts. Best wishes, Mickey P.S. keepin the faith!
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Hi SG;
Do you see Dr. Driscoll also? I see him and Dr. Link, both very fine personalities! Re, W&W, it is known the better the hearing going into Tx, the better coming out.
GK will almost certainly place a drag on hearing in several months time. Re, RS, that is a hearing sparing surgery. Both procedures are impossible to predict the outcome of.
My personal feeling is Mayo Drs are much more conservative than some, say, Dr. Gantz at Iowa City? I'm always thinking logical outcomes when thinking of watch and wait.
IOWs, my feeling is you will be watched and waited as your hearing declines and still nothing done.
But, what's one person's opinion worth? Not much.
Best wishes!
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I did see both, and liked them very much. I'll probably stay with Mayo going forward. I don't mind conservative.
And I realize that W&W has risks, too. I'm just curious to see what happens over a 6 month time. If new symptoms arise before then, I may just get on with it.
I don't see how I could arrive at a "perfect" decision. Seems like it's more a matter of making a choice you can live with, and then trusting that whatever happens, you'll find resources to deal with it.
That's my plan.
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I am not a musician, but I am trying to learn classical guitar. SSD does not prohibit you other than to take away your stereo hearing. I am 62, and I am sure at 68 you have a life time of good experiences, just like I have. SSD will not impair your life...unless you allow it to. Keep making music and enjoy your life.
James