Author Topic: advice on quickly deteriorating hearing, no treatment yet  (Read 616 times)

carriekartman

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advice on quickly deteriorating hearing, no treatment yet
« on: December 14, 2023, 04:01:17 pm »
I'm officially in "wait and watch" status, but am trying to line up SRS with the best place I can afford as quickly as possible . I was just diagnosed in October, with a 1.2 cm tumor, but already my left side hearing (word discrim) was down from 100% last December to 28% in October. Now 2 months later it's down to 8%. Ugh. Does this mean I have a fast growing tumor? (that's my hunch). And best to forget the "you have plenty of time, these tumors grow slowly," standard line? I sense I am not in that group, but would love to hear from anyone with insight, or a similar swift decline in hearing. Dizziness is also bad, but fluctuating, and am in PT already. If SRS can halt that progression it's vital to me.

donjehle

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Re: advice on quickly deteriorating hearing, no treatment yet
« Reply #1 on: December 14, 2023, 05:10:36 pm »
Hi carriekartman!  We're glad you are here in the forums!

Increasing symptoms does not necessarily mean that your tumor has grown any.  I went from 100% hearing while in watch and wait status to 12% hearing in one month, and when they did my six month MRI, my acoustic neuroma has not grown any at all!  It was still the size it was when I had 100% hearing.  So, do not jump to the conclusion that your tumor has grown.  It may have or it may not have.  Worsening symptoms is not always an indicator that your acoustic neuroma is growing larger.

And, if someone told you that "these tumors grow slowly," that is not entirely accurate either.  Most acoustic neuromas grow slowly, but some do grow quickly.  The norm is that they grow slowly, but there are exceptions to the general rule.  The MRI is the only way to know how quickly your tumor is growing.

And the size of the tumor is not indicative of how bad your symptoms will be.  I have a very tiny acoustic neuroma, and I lost almost all of my hearing in the AN ear.  I had terrible balance issues where I needed a cane and fell frequently.  I have continual tinnitus.  But I know of others who had a very large acoustic neuroma, yet maintained their hearing 100%, have no tinnitus, and do not have any balance issues.  They had to have surgery because their tumors were so large.  Yet, they have not suffered with the issues I experienced.

All this tells me that you really cannot know that your tumor is growing because your symptoms are getting worse.

I wish you all the best on your journey, carriekartman!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

mwatto

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Re: advice on quickly deteriorating hearing, no treatment yet
« Reply #2 on: December 15, 2023, 12:12:53 am »
It probably does not mean your tumor is growing. Even small tumors secrete pro inflammatory proteins that can damage the acoustic nerve. My hearing is really good in both ears and I had CK almost 5 years ago for an almost 2 cm AN. There are medications which can cause acoustic damage, lifestyle such as exposure to loud noise, and viral illness eg. I take a number of what I hope are protective supplements and eat mindfully. Also keep your blood pressure in range
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing