Hearing Loss

[Rjsauro]

Hello,

My first post, and I welcome any insight!

I am just about 6 months post gn surgery and everything appeared to go fine! I am due to undergo my follow up mri. I have had constant tinnitus since the procedure and some hearing loss but the last few days, my hearing has gotten significantly worse where I can hardly hear out of my right ear. The tinnitus appears to have worsened as well!

Has anyone experienced this? I am getting pretty anxious over this and fear of the unknown is starting to kick in!

I appreciate any input!

Thanks,
RJ

[SueLL]

RJ - I had Gamma Knife in July.  At that time I had 92% word recognition in my AN ear.  I knew that my hearing had deteriorated over the past few months, and it fluctuates with stress and weather.  Last week I was stunned to be told that I had no useful hearing in my AN ear.  Not the outcome I was hoping for!

If your hearing loss is sudden, I have read that a dose of steroids can help provide relief.  You might want to contact your doctor and see if that is an option. 

Good luck - I hope your hearing loss is temporary!

[Rjsauro]

SueLL,
Thanks for your quick response!!! I am sorry to hear of your diagnosis!!! I guess this is all catching me a bit off guard, going into this I was concerned of many things (facial nerve damage, hearing loss . . .), but after coming out of the gn surgery and feeling the way I did, I thought I was home free! Now this! I have a call to my Dr.'s and need too see what's next!  Are there options for you to improve the hearing in your an ear (hearing aid)?
Thanks for your help! I wish you well and will keep you posted!
RJ

[SueLL]

I think my best option right now is a CROS hearing aid.  It places a microphone in my AN ear to send the impulses to my good ear.  I have an appointment with a hearing specialist soon.

I totally understand - I felt pretty normal after the surgery and my hearing was intact.  The hearing loss was gradual until the past month or two.  I guess my tumor swelled into my auditory canal.  I naively hope that when the swelling goes down and necrosis begins that I'll get some hearing back.  According to the ear dr and the forum posts, that is not likely.  I am struggling with the fact that I went to UPMC because my chances of preserving hearing seemed higher than doctors nearby suggested.  I'm also questioning why I did not "watch and wait".  I know all this is irrelevant, but it is part of the process of grieving for my lost hearing.

Thanks for listening, and good luck!!

[arizonajack]

I think my best option right now is a CROS hearing aid.  It places a microphone in my AN ear to send the impulses to my good ear.  I have an appointment with a hearing specialist soon.

The Cros is a good option. I've had mine for almost 3 years. It's good but not perfect. Noisy surroundings are an issue although the latest generation of products may have improved the noise filtration.

I suggest that you get on to Phonak's website and familiarize yourself with all the products and read the owner's manuals that they have on the website.

http://www.phonak.com/us/b2c/en/products.html

Make sure your specialist gives you a 30 to 90 day money back trial period, in writing, in case you aren't satisfied with it.

Phonak makes a remote control accessory that I found to be indispensable. It's called the MyPilot. It can be programmed for a variety of scenarios and has a view screen so you can see where you are navigating.

http://www.phonak.com/us/b2c/en/products/accessories/mypilot/overview.html

They cost a few hundred dollars but they are well worth the money. Try negotiating a package deal with the specialist. You'll also want to negotiate a big supply of batteries, wax traps, and rubber domes, although you can find those three on Amazon reasonably price. The trick is to get everything possible thrown in to your package deal for the best possible price.

[ewhitese]

I am 18 months post GN and have about 10% word recognition left in my tumor  ear.  I just had my 3rd post op MRI last Thursday, still waiting for discussion with physicians about the results.  I have owned a hearing aide for that ear prior to surgery and rarely use it now.  It does amplify  sound well but all of it and does not discriminate speech well enough to be the hearing restoration I was looking for.  I discussed hearing aide options Thursday and am still on the fence as what to do.  Baha is out if there is any residual hearing left in the ear it will interfere with the baha and cause the brain to scramble the sounds anyway.  The Baha is a bone vibration implant device that bypasses the injured nerve and delivers sound vibration to the brain.

My suggestion would be to wait it out.  You are only 6 months post surgery and have some changes to your hearing coming.  I would not be in a hurry to take on the expense of permanent hearing aides until you are sure you have reached a leveling off point which will not come for a year or so.  If your hearing is good in the other year you will get used to compensating for the loss on the other side.  I know those are not the words anyone is looking for, nor am I, which is why I was in pursuit of the baha.  I use the hearing aide in some instances but take it out, put it back in, never seem to be completely satisfied.  During conversation with out, outside noise interference it works well to help me understand speech but in a crowd or loud restaurant background noise etc it is pretty much worthless.  The background noise over powers the hearing aide and is the focal point of the sound coming from the aide.   I don't see the benefit of putting a hearing aide in my good ear to pull sound from the other side if it will interfere with the hearing in the good ear as much as it does in the bad one.  So I am waiting for a while longer before I invest in more hardware for my head.

I think I have leveled off and swelling has stopped but I am not finished with the process and hope to regain some hearing before all is said and done.  My doctor is not showing me optimistic thoughts and pretty much tells me I am where I will be for good.  I am not willing to give in to those negative waves yet baby.  I have no indication that the tumor has begun to shrink yet so that gives me hope I may get some hearing back.  I even believe I have periods of increased hearing in that ear but can't say I am improving because I have equally as many days I think it is worse.

So to amplify or not to amplify that is the question, during the post surgery months my hearing aide did help me to maintain a level of confidence that I was hearing better with it.  That did not last and now, 18 months out, do not feel as though I am getting the sound from the hearing aide much at all.  I can't say it will work or won't all I can do is share my thought process, you will have to make up your own mind.  Hope there are others here who will chime in and share their hearing adventure as well.  I am only one in the midst of all these others who have their own unique experiences.

[SueLL]

arizonajack and ewhitese - Thank you both for the input!  As you well know, there seems to be a decision with pros and cons at every turn.  I appreciate the insights. 

I agree that my hearing is still fluctuating, but today was the worst ever - felt like a brick was stuck in my ear and lots of pressure.  Could not detect a dial tone in my AN ear - first time ever.  Wondering if it is the weather, stress, tumor exploding . . .

I selected the hearing center I am visiting next week because they advertise trial runs of hearing aids - if that is what is actually recommended.   I had my hearing evaluated somewhere else and the doctor - who I found very cold and impatient - mentioned the possibility of CROS.  I was too upset with her diagnosis at that time but have begun investigating the possibility and look forward to talking to someone else.  I'll do the homework that you suggested.

[arizonajack]

SueLL, your hearing experience parallels mine except that my AN hearing was completely gone before my GK.

My guess is that your auditory nerve was already damaged by July 2014 and damage continued over the next 6 months even while the tumor was dying from radiation.

I know, too well, the sadness of holding the phone up to my AN ear and hearing nothing.

The following images may be of interest to you. They depict the tumor progression after GK. At six months there is the expected swelling and necrosis. At 12 months the tumor is stable. Shrinkage occurs beyond the 12 month mark.

http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg

My AN so far has followed that progression very closely and my two year MRI will be done in April (actually 26 months post GK).

[SueLL]

Very cool pictures!  Thank you!

[ampeep]

Prior to GK, I could barely make out words using the phone on my AN side.  Three months post-GK, my hearing disappeared completely.  This was accompanied by severe dizziness and screaming tinnitus.  The tinnitus was interspersed with tinkling, whooshing and other weird sounds.  My radiation oncologist was surprised because my inner ear did not get that much radiation.  My three month post-GK MRI which showed AN swelling, which explained my symptoms.

It's a little over a year since GK and my hearing has slowly gotten better -- I can hear sounds but still can't make them out.  My 6 month MRI showed that my AN had shrunk from my 3 month post-GK size.  My docs said that it was promising that my hearing was getting better.  Am hoping for continued improvement and less dizziness & tinnitus.  (The other weird sounds have gone away.)

Agree w/ ewhitese; it's only been 6 months so things could change. 

[Rjsauro]

Thanks for all the info!!! This is the beauty of this forum, "speaking" to others, like yourselves, who have travelled down this road before me and are able to shed some light on the subject!!!

I am now in the process of setting up my appointment for my 6 month MRI which will hopefully give me some answers as to the "progress". I am hopeful that the hearing loss will in fact improve as the tumor shrinks, and that the awful tinnitus will diasappear or that I will get so used to it that I don't even recognize it any longer. I will keep you posted!! Be well and stay positive!

[SueLL]

Good to hear back from you - was wondering how you were doing!  Keep us informed.  I have learned that it helps to share our experiences - good and bad.

[SueLL]

I wanted to post the results of a second opinion to share my experience.  Six months post GK I had a hearing evaluation with an audiologist.  I was devastated to learn that I had lost all useful hearing in my AN ear.  I knew the hearing was gradually diminishing, but I was pretty surprised and shocked to hear her diagnosis.  Today I visited another audiologist.  His testing was similar, but more comprehensive.  As had occurred in the first evaluation, I heard garbled sounds in the AN ear.  Instead of telling me that the words I repeated were not right and that I did not have useful hearing, the second audiologist placed amplification in the ear so that I could hear the words!  He has recommended a Starkey hearing aid, rather than a CROS hearing aid.  I do have profound hearing loss in the AN ear, but I am excited to try amplification.  Keep your fingers crossed!!