Author Topic: New to AN  (Read 1733 times)

Denisem

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New to AN
« on: June 10, 2019, 05:42:18 pm »
Hi, I was recently diagnosed with AN, my situation may be somewhat unique in the fact that my non AN ear is 'dead'. I have never been able to hear in my right ear and the AN is in my left. Surgery is completely out of the question and my only option is CK, which I hope to get started soon. My burning question... how many people have had CK and have retained some or all hearing that they had?

ANSydney

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Re: New to AN
« Reply #1 on: June 10, 2019, 07:19:10 pm »
Denisem,

Welcome to the club that nobody wants to be a member of but everyone is friendly.

As you've probably already come across, there is no rush to treat. In the vast majority of cases these tumors grow slowly if at all. Unless it's large or you have intractable symptoms, you may want to consider to wait until your follow up MRI in 6 months to see if is still growing.

How large is your tumor?




Denisem

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Re: New to AN
« Reply #2 on: June 11, 2019, 05:38:05 am »
Hi!, indeed everyone is friendly and there is a lot of info on this site! Very much appreciated.  The tumor is only 1cm but it's very close to the cochlea and as stated in my first post, I have zero hearing in my right ear. In between a rock and a hard place with this. Totally terrified that I'll be completely deaf. I'm looking into a cochlear implant for the ear I've never heard out of. My specialist is not real hopeful that the implant will work. Just hoping that the radiation will not take any more hearing.
« Last Edit: June 11, 2019, 10:49:29 am by Denisem »

ANSydney

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Re: New to AN
« Reply #3 on: June 11, 2019, 04:53:38 pm »
Not only am I going to suggest serial MRIs, but especially in you case, serial hearing tests. According to this paper, best way to keep your hearing for as long as possible is to do nothing. https://pdfs.semanticscholar.org/2cef/abe8e8eef1ae32cab8bcf3c71dd75f53387c.pdf?_ga=2.146835327.916038312.1560292998-541116191.1558047786

If hearing declines faster than the attached paper suggests, you may have to revisit your situation.

What's your current good ear hearing level (PTA) and speech discrimination scores?

It may pay to keep observing MRI for growth and hearing tests for hearing decline until you've got a good handle on this.

Denisem

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Re: New to AN
« Reply #4 on: June 12, 2019, 09:48:27 am »
Hi ANSydney, thank you very much for the article, there's a lot of good information! I meet with the Cyberknife team on June 20th and have another scan. I now have more questions to ask. I know the concern from 2 neurosurgeons and my ENT has been the location and it's proximity to the cochlea. More to come...

Director

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Re: New to AN
« Reply #5 on: June 12, 2019, 11:34:10 am »
Denise,
  Here is a link to a list of questions you can bring to your appointment with your doctor:
https://www.anausa.org/learn-about-acoustic-neuroma/question-to-ask#questions-for-the-radiation-treating-medical-professionals
 We also have a list of questions to ask yourself when deciding on treatment. The ANA Medical Advisory Board tells us that research shows that hearing in a person with AN is more likely to decline regardless of treatment type.
Please feel free to reach out to us at ANA with any questions.
Best regards,
Allison Feldman
ANA CEO
director@anausa.org