Author Topic: To wait or not to wait....  (Read 3305 times)

ANSydney

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Re: To wait or not to wait....
« Reply #15 on: January 31, 2019, 03:49:12 pm »
Congratulations on no growth.

Would vestibular therapy help you? Also, with time, would central compensation make thing better.

JKnotdobbins

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Re: To wait or not to wait....
« Reply #16 on: January 31, 2019, 04:38:48 pm »
Thanks Sydney & great questions. I am seeing another doctor in a month that specializes in vestibular issues.
Diagnosed left AN in August 2017
8/17 measured 14x18x13mm
Located in CP angle

ggc

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Re: To wait or not to wait....
« Reply #17 on: March 05, 2019, 12:00:11 pm »
I have a very small tumor (3.5 mm) with mild hearing loss that was dx about a year ago. I, like many of you, have been debating take it out or leave it alone. It's not necessarily the case that the odds are the same either way because there are many other individual factors involved. Both waiting and choosing intervention are decisions with consequences, unfortunately.

If you can get to one of a handful of surgeons who do middle fossa surgeries routinely, the success rate for tiny tumors, when going in with class A hearing, is 70-80%. The likelihood of losing functional hearing 10 years out is somewhere around 65% (looking at population studies from Denmark where they don't do surgery unless the tumor is really causing problems). So it depends on the specifics of your situation, how long you expect to live, and how comfortable you are with immediate versus long term risk. 

I find it difficult to be responsible to make this decision, but I also know that it's important to be grateful to have choices as I'm sure all of you know people with malignant tumors for whom there are truly no good options. Our options aren't great but they could be a lot worse.
Gina

janerioux

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  • Jane Rioux Registered Nurse
Re: To wait or not to wait....
« Reply #18 on: March 18, 2019, 09:08:14 am »
Your story sounds so much like mine.  I too have decided to wait and I asked my provider when do I know when I can't wait anymore.  He told me, if the tumor starts to grow, if I have severe vertigo or facial problems or the tumor is causing anxiety.   I left the office last week with some vestibular exercises and I too have been exercising and making sure I get plenty of rest.  I will wait as long as I can and do everything in my power to stay healthy.  The tinnitus is annoying and hearing loss difficult but hearing aids are coming although my insurance covers the BAHA and not nonsurgical hearing aids.  Makes no sense to me but I am going to try and get them covered.  Best of luck with your decision.
Jane

 


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