Author Topic: Large Tumor and Sub-Functional Hearing  (Read 1979 times)

tullycicero

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Large Tumor and Sub-Functional Hearing
« on: January 11, 2016, 03:59:44 pm »
Hello everyone! I'm new here, and looking for some guidance regarding different surgeries approaches considering my hearing in the affected ear. Bear in mind that I was diagnosed on 1/7 so I've only spoken to one neuro-otologist so far.

I've been recommended to have surgery on this tumor, and the doc's preference is a translabyrinthine approach. The reasoning was that my hearing isn't salvageable. I forget what I scored for the pure tone measure but I remember my word distinguishing was at 30% (funny note, I legit thought I heard the words 'wombat,' 'helipad,' and 'mopey' were on the test. The test made of monosyllabic words. Go figure). At first I was okay with this recommendation, but right now I'm having second thoughts about giving up on my hearing. I'm not under the illusion that my hearing is going to get better. I also was set on getting a CROS hearing aid anyways back when we thought my ear issues was Meniere's disease or some viral scarring. In reflection, I think I'm starting to feel just how much of an emotional attachment I have to my hearing now that the treatment option involves complete elimination of what I have left.

So my question for y'all is for those who made the decision between trying to preserve hearing or not, how did you make it? Some additional factors I'm considering are the size of the tumor (2.7 cm) and the fact that I'm already feeling some facial numbness from it's location (getting a little too cozy with my other nerves). I'm also in the middle of a graduate program in mental health counseling, so my hearing ability is pretty crucial to my career plans. Granted, my hearing loss hasn't interfered with counseling individuals. But anything involved three or more people talking at once has been a blast let me tell ya.

Cheers!

CHD63

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Re: Large Tumor and Sub-Functional Hearing
« Reply #1 on: January 11, 2016, 05:04:08 pm »
Hi tullycicero and welcome to this forum .....

If you have not already done so, please send for the ANA free informational materials.  They contain a wealth of accurate information.  See:  https://www.anausa.org/component/rsform/form/20-ana-contact-us-copy

As you browse through the posts on this forum, you will see frequent references to the need to choose physicians with vast experience in treating specifically acoustic neuroma.

As for retaining your hearing, as I suspect you already know, statistically given your hearing and speech discrimination levels now, it is unlikely that you will retain your hearing long term.  However, you need to check with multiple doctors for opinions on that.

Many thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

v357139

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Re: Large Tumor and Sub-Functional Hearing
« Reply #2 on: January 11, 2016, 07:32:24 pm »
I had a 2.7cm and had pretty good hearing in that ear.  I was kind of obsessed with keeping hearing in it.  After 4 or 5 doctor consults and one BAER test, I was finally convinced that my hearing could not be saved.  Talk to very experienced surgeons, and ask them specifically about it, and your other concerns.

I have heard of Dr Chang at Stamford claiming greater chance of hearing preservation with Cyber Knife, so you may want to consult with him, if you are interested in radiosurgery.  He does the consult by mail and phone.

Lastly, I lost all hearing in that ear.  I can honestly say I barely miss it.  Keep us posted.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

 


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