Sudden Hearing Loss and Acoustic Neuroma

[mposki]

Brand new to this world. Here's my timeline:

- Sudden hearing reduction and mild tinnitus when I awoke on Sept 2nd
- ENT/Audiology diagnosed me with Sudden Sensorineuro Hearing Loss on September 5
- Began 9 day course of prednisone on September 5
- MRI diagnosis of 6mm AN on September 11
- Will undergo GK treatment in coming weeks

In talking with both the ENT and the Neurosurgeon they said it is unlikely I will regain hearing in my, now, bad ear even after GK procedure. Both also said that they had never seen someone with sudden hearing loss due to the AN.

Since this seems rare I am wondering if anyone else out there had SSHL due to an AN and then had the GK procedure and what their recovery was related to hearing recovery.

[Bchovnick]

Hello.   I also experienced sudden loss of hearing, but because of the covid epidemic, I was unable to determine the cause immediately, as you seem to have done properly.  But eventually I did loose more hearing and did determine the cause as an AN. By the time I had GK, my hearing was further impaired.  The doctors told me not to expect any hearing improvement.  I asked if there may be side affects from GK and was told "yes" but not much additional detail.

I had been wearing a traditional hearing aid and it did help some hearing, but mostly tinitus and dizziness.   But after 1.5 years since the GK, I recently had a hearing test and it is mostly unusable.  In fact, tomorrow I have an appointment to begin looking into a Baha since I can hear well in the good ear and through bone tranission from the bad side.

I am relatively new to this forum and i have found a wealth of information.  Especially interesting is much of the comparison between gama-knife and cyber-knife.  Having said that and knowing more now, I wouldn't hesitate either of those procedures again.  As of now, my AN is unchanged and I will hope annual MRI's continue to provide positive news. 

[DanFouratt]

I am not sure if you are one and done with radiation or need multiple treatments.  I had CK one and done two weeks ago. The one unexpected (not warned about?) was complete loss of hearing in the treated area.  I had 60% going in and it dropped to zero the day after.  I was informed the this was expected and it will return when the swelling goes down. It has started coming back. You may want to ask a few more questions just so you are not surprised about anything.

I was looking in to Cochlear implants.  They are reported to address tinnitus. Dr. Cunningham (Duke) did a presentation on hearing systems in July of this year and stated this.  It video is in the archives and talks about all the options available to us. However at this time I do not qualify.

Good luck with your procedure.

[stevehernes]

Are you getting hearing aids soon? I’ve been using Phonak Audeo hearing aids for about 2 1/2 months. I have a low frequency hearing loss in one ear and a high frequency hearing loss in the other. It has taken multiple tele-health meetings with the audiologist but we are achieving positive results.

[donjehle]

Hi, mposki!  And thanks for posting on the forums!

Maybe I am misunderstanding the ENT and Neurosurgeon, but Single-Sided Hearing Loss is a common sympton of a possible Acoustic Neuroma.  I have significant hearing loss in my left ear, and the only cause of it was my AN.  I am in the watch and wait protocol, so I have not yet had radiation treatment or surgery.  No treatment caused my hearing loss.  The only explanation for my SSHL was the AN which my family doctor, ENT, and Neurosurgeon all agreed was responsible for my loss of hearing.  And both my ENT and Neurosurgeon said that I will never regain my hearing in my left ear no matter which treatment I may have some day.  Apparently my AN damaged my auditory nerve and that damage is not reversible.

I hope your GK treatment goes well.  Please post your experience here so that it can be a resource for others.

Best wishes!
Don

[mwatto]

Hi I had CK 5 years ago. I did notice some tinnitus post covid but its gone now. Update: Just had audiology done for 5 year check up yesterday and no change still at 85% that ear, other ear 100%. I am 63 years old so pleased that its holding so far. Was 85% at diagnosis.

[SeaCat]

Just seeing this post. "Never seen someone with sudden hearing loss due to the AN" sounds to me like a misunderstanding, but you heard the same thing from two people, so ... maybe they are inexperienced?

My story is similar to yours, although mine starts with a slight hearing loss and a diagnosis of Eustachian tube dysfunction. Then came a more profound hearing loss, prednisone (prescribed by urgent care), audiology indicating sudden sensorineural hearing loss (SSHL) and showing that the middle ear was fine (i.e. no Eustachian tube dysfunction), confirmation that the prednisone was the right move, and an MRI just to rule out some benign mass that sometimes causes SSHL. And guess what? There was a benign mass--a vestibular schwannoma/acoustic neuroma (which I am sure was what the ENT had in mind all along when she said "benign mass," but that would have required a lot of explaining at that time).

Mine is big enough (17 mm) and I am young and healthy enough to lean towards surgery, which I have scheduled for June (but may push out a little more). I have had a couple of hearing tests since the diagnosis, and it has improved a little each time, but it is still not nearly good enough to be considered functional. I picked out CROS hearing aids two weeks ago, and I go to pick them up today!

[donjehle]

I picked out CROS hearing aids two weeks ago, and I go to pick them up today!

I would like to know how you like your CROS hearing aids, SeaCat.

Even though mine are far from perfect, there are many things I could not hear from my AN ear without them. So, I know I need them, even though I don't like wearing them.

[SeaCat]

I would like to know how you like your CROS hearing aids, SeaCat.

Even though mine are far from perfect, there are many things I could not hear from my AN ear without them. So, I know I need them, even though I don't like wearing them.

Six months in, and I agree with this assessment. I can be critical of what they don't pick up while I am wearing them, but particularly on the occasion or two when they have malfunctioned, I have been quite out of sorts! So they are clearly a big help.

I feel as if I am getting better at dialing them in for noisy environments, but those are still difficult.

The quirkiest thing, to me, is the fact that the hourly Big Ben-style chime on our household clock picks up a vibrato for me when I am wearing the hearing aids (which is nearly all the time); I suppose that what is happening is that there is a tiny delay for the signal from the right side to get over to the left, causing this vibrato effect.

In all, it feels like they are about 60% effective, which is way better than zero, but can still feel a bit frustrating. But I try to remind myself of how much I would miss without them.