Hearing loss

[Leta7417]

What type of hearing loss do people get due to the AN?  My pure tone loss is not significant but the speech discrimination loss is.  I am W&W since the tumor is small, 9mm.

[Echo]

I think it's safe to say most people will at some point experience complete hearing loss in their AN ear.  The length of time it takes to lose your hearing can vary greatly.  If you look at micro surgical options, you loose all hearing immediately after surgery if you have the Translabyrinthine Approach.  With the Retrosigmoid approach some people have a chance of retaining hearing while others do not.   The Middlefossa approach offers a better chance of preservation of hearing. 

Radiation (Cyber Knife / Gamma Knife) usually extends the time one can keep their hearing.  I opted for Gamma Knife Radiosurgery and was told I would most likely loose all hearing in my AN ear within 3 to 5 years of treatment.  I just reached my 3rd year anniversary post treatment and I still have usable hearing to a certain extent.  I can hear sounds and some speech, but my word recognition drifts back and forth from 20 to 40%.  This level of hearing for me has been consistent since a year prior to my Gamma Knife treatment.

Cathie

[PaulW]

My hearing loss was weird, when it started I lost volume. Quiet things were quiet but loud things were quiet too. Loud or quiet it was the same volume. So I passed hearing test but was pretty much deaf as the volume of the room increased. A few weeks later hearing discrimination dropped and everybody sounded like a dalek from Dr Who. I had Cyberknife my hearing got worse almost immediately but slowly came back over 6 months. It actually returned to normal.
I then had a number of bouts of sudden hearing loss. The last of those was 3 years ago.
I am 6 1/4 years post CK and I can still hear reasonably well in my AN ear. I have lost some hearing in the upper frequencies but nothing down low. I wear a hearing aid which works miracles in restauraunts and noisy situations. I was quite surprised going to a night club with really loud music and I could hear better with my AN ear and the hearing aid than my normal ear. It help filter out the noise. Unfortunately over 80% of us will lose our hearing within 10 years either on watch and wait surgery or radiation.

[mcrue]

My hearing declined from 100% word recognition to only 10% word recognition in just one week after Gamma Knife treatment. My hearing never recovered.

I was hoping to get at least 2 - 5 years of serviceable hearing after radiation.

Regardless if I decided on Watch & Wait, Microsurgery, or Radiation my hearing still would have been gone within 10-years  according to most every doctor I consulted with.

I didn't expect it to happen to me in such a dramatic fashion (from virtually 100% to 10%) in just 7 days post-treatment, especially when they said they were going out of their way to try an avoid radiating the cochlea.

I've read a similar story on the ANA forum of a Grand Mother who presented to Dr. Lunsford with virtually 100% word recognition only to be SSD in just 3 months post-GK.

Not everyone experiences the luxury of serviceable hearing for 5 years post-GK.

[Leta7417]

Thanks for everyone's reply.  i find it challenging now knowing when the loss get worse and if I will ever need treatment. Patience is called for!!

[Sheba]

Some people choose to have surgery before their hearing is lost, in hopes to keep it.  I don't think there is a lot of good data with for example, hearing quality pre-surgery, and post-surgery 1 week, 6 months, 2 years etc.  I think some folks can hear post-op but maybe not that great,  and not sure if it holds up well down the road.

I was hoping they could save my hearing (retrosig in july) - I had 90% word discrimination pre-op but I lost 100% / am SSD post op.  I knew I had only like a 50/50 or maybe somewhat better chance to keep it, but lost it.  The surgery can cut off blood flow the auditory nerve, so even if the nerve is intact, you can still lose hearing.

i've seen quite a few other people post that their hearing was preserved post op, usually small and midsize tumors only - chance to save is worse as the tumor gets bigger.

If the tumor is still in there, some research shows it can damage hearing even when it's not growing because it secretes toxic byproducts.  Not all AN tumors do this apparently.

I'm finding SSD to be pretty tolerable, it's hard in some situations with lots of people and bad acoustics around you.  Most of the time it's not an issue for me.

[Willbur]

Some people choose to have surgery before their hearing is lost, in hopes to keep it.  I don't think there is a lot of good data with for example, hearing quality pre-surgery, and post-surgery 1 week, 6 months, 2 years etc.  I think some folks can hear post-op but maybe not that great,  and not sure if it holds up well down the road.

I was hoping they could save my hearing (retrosig in july) - I had 90% word discrimination pre-op but I lost 100% / am SSD post op.  I knew I had only like a 50/50 or maybe somewhat better chance to keep it, but lost it.  The surgery can cut off blood flow the auditory nerve, so even if the nerve is intact, you can still lose hearing.

i've seen quite a few other people post that their hearing was preserved post op, usually small and midsize tumors only - chance to save is worse as the tumor gets bigger.

If the tumor is still in there, some research shows it can damage hearing even when it's not growing because it secretes toxic byproducts.  Not all AN tumors do this apparently.

I'm finding SSD to be pretty tolerable, it's hard in some situations with lots of people and bad acoustics around you.  Most of the time it's not an issue for me.

Well if you lost you hearing on retrosigmoid then I will most likely lose mine with 2.3cm tumor 

[WhatnotGems]

Last year I could use a hearing aid to enhance the hearing in my right ear. I have had hearing issue with the right ear for 4 years. I found out in June I have an AN. In August I was told the AN ear has no usable hearing, I with the hearing aid I cannot understand. I have found not wear a hearing aid in my AN ear helps with my comprehension when talking to others.
I have not had surgery or Ck, I am on the watch and wait.
right side facial pain, wonky when turning head, depression, headaches.