Author Topic: Watching and Waiting Coming to an End next week  (Read 2344 times)

new_mexico

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Watching and Waiting Coming to an End next week
« on: March 26, 2013, 06:33:13 pm »
Hello, Once I found this site in Dec., I was led to act more proactively about my AN.  I have a small AN 3mmx1mm that was first seen in 2008, though it had steadily caused what is now a complete loss of hearing in my right ear, along with tinnitus which can sometimes be quite loud  I have also developed some facial pulling and tugging, and am just starting to experience what might be some balance-related issues, though they are quite minor.  At any rate, my first neurosurgeon told me to watch and wait, and I did for years not thinking that this was a big deal in my life and knowing the tumor was benign.  I had an MRI every year, and no growth was seen.

I have decided to move forward and am scheduled for CK with Dr. Chang at Stanford next week.  I also wanted to relieve the stress of always wondering if there would be growth at the next MRI.  I am nevertheless nervous about my decision but do want to try to stop all the difficulties that have come with the AN by knowing that the tumor is dead.  He puts the success rate at 98%.  I am taking a deep breath to make sure I know my own mind about this, but at Dr. Chang has said there is no one standard treatment for ANs.  I am just trying to do the best for myself.  My insurance will cover almost the whole expense after the deductible and I worry that I might not be in the same position if I postpone.

At any rate, it would be good to hear from some watch and wait people who decided on their own that they had to take some action.  Dr. Chang said that I have to be ready for the symptoms to live with the symptoms even with CK, and I think the status quo is manageable.  But I do hope that the CK might have some positive effect.

I have been watch and waiting for long enough that going for treatment seems like giving up--does that make sense?

skipg

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Re: Watching and Waiting Coming to an End next week
« Reply #1 on: March 27, 2013, 07:50:20 am »
Congratulations on your decision to proceed with treatment. Sorry for all your symptoms for such a small tumor. Please keep us posted on your outcome. You progress may help others with smaller size tumors to make up their minds on treatment.
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12