Any musicians out there?

[DaisyJane]

Hello!

I was diagnosed with AN six weeks ago. I am to undergo surgery in about three weeks (leaning toward translab, but still weighing retrosigmoid). I am a musician and singer. My hearing on the AN side has been decreasing for six years, and while it is still functional hearing with 80% word recognition, it is not incredibly useful for something as nuanced as sound mixing. However, it is still useful for playing instruments, gaining feedback from the side of the hearing loss to inform my technique, and monitoring my voice. I would love to hear from other musicians about their experience of single-sided deafness -- specifically, how difficult was it to adjust to music again? Did playing music change in any way or become more difficult? Is there any rehab needed to be able to play with the same subtlety? Does singing sound weird or does the deafness make it difficult to sing? Any advice would be appreciated too!

Thank you!

[CHD63]

Hi DaisyJane and welcome to this forum .....

Thank you for sharing your concerns re AN surgery.

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

One of the things that we stress is seeking a physician with vast, successful AN treatment.  Given that hearing is vitally important to your career, it is even more important to have the best possible care.

I am a musician also, so when I lost my hearing it felt devastating.  Each of us have different scenarios re our hearing loss and how it affects what we do or what is important to us.  I will not sugarcoat it that losing hearing has been a significant adjustment.  I was a singer and pianist/organist so it affected me in several ways.  In my case I have had two AN surgical removals because it grew back after the first surgery (this is very, very unusual so do not think it happens frequently).  The first surgery was retrosigmoid approach and I did retain 20% of my hearing with 100% speech discrimination so a traditional hearing aid helped tremendously.  However, music no longer sounded the same from both sides.  I learned to position myself when singing with others (whenever possible) to accommodate the deficit, which worked.

Following my second surgery via translab I, of course, became totally deaf in the AN ear.  Because I knew ahead of time this would be the case, my surgeon (Dr. Rick Friedman) implanted the abutment for my Oticon Medical Ponto (bone-anchored hearing device) at the same time.  The Ponto receives sound from my AN side and sends it to my only hearing ear via bone conduction.  Therefore directionality is greatly affected, but I do hear what is coming from both sides.

I still play without difficulty, but singing has been a difficult adjustment.  You do not say how old you are but if you are young, I feel your brain will make the needed adjustments and you will do fine.  Up until my first surgery I had "perfect pitch," so relearning how to "hear" music has been difficult.

If you would like to know more, I would be happy to talk with you.  Just PM me or let me know (do not put any identifying contact info in the body of a comment here, however).

Tell us a little more about your situation ..... size of your AN, treatment options you have considered, etc.

Thoughts and prayers.

Clarice

[tweety]

I  had AN surgery June 8, 2010.  I am also a singer and there is definitely an adjustment curve but I am still active in my music club and sing lots.  You do learn where to position yourself so you can be sure to stay on pitch.  Like everything in life there are bumps in the road and you just take them the best you can and adjust.   Tweety

[phantagrae]

I found myself asking similar questions when I was first diagnosed 3 years ago, except that I was a professional orchestral musician and the idea of losing my hearing  (or my facial nerve) was very frightening.
I opted for radiation as my ENT felt that was the best way to maintain what was then almost perfect hearing.  It worked for another season, but I noticed I had some hearing loss after all.
I had follow-up MRIs every 6 months and though my radiation doc felt good that the tumor seemed "dead", I still lost more hearing and my word recognition, which had been at 100% to begin with.  Last time I was tested I felt like I was taking a french test for which I hadn't studied.
Because I sat 2nd chair Bassoon in the symphony, all the nuance I needed to hear was on my deaf side.  I could hear well enough when it was just the woodwinds playing, but aL that got obliterated when the rest of the orchestra came in, etc..
After a while it became too difficult to play at the professional level and I had to make the heartbreaking decision to retire.
And now, because apparently my tumor has been slowly growing, I find myself about to have translab surgery which will, of course, end whatever vestiges of hearing I have.
My question has been, if I haven't had any tinnitus up until, am I likely to develop it after the surgery when my hearing nerve is cut?
Right now I can still play my instrument, though I haven't really played since Christmas, but I'm wondering if I'll be to do anything going forward.

[lilith]

How are you doing? I really hope that your surgery went well and recovery is progressing.

I am not a musician (I wish!) but I am an academic and this AN situation is awful to write papers and read carefully. I cannot retire, I am only 43 and if I retire under the law for permanent disability, my pension won't allow me to live (I have a 5 year-old). But I do not want to retire, I have to do enormous efforts to write and think when my head is not wonky.

Hugs,

Lilith

[dvPete]

I'm late to this party, but I'll post anyway for future readers, if not for the OP. I am a musician as well. I don't sing (ever) but I am a violinist, and I used to mix professionally both in the studio and live. I had translab surgery in 2013, so am now SSD (right side). There was a significant adjustment period for me in being able to listen to music again. But I was eventually able to get back to mixing again. My non-AN ear is pretty much 100%, so the biggest thing for me to adjust to was the lack of directionality. I do miss stereo    And I'm a bit of a perfectionist when it comes to mixing, so I'll probably never be able to trust myself 100% again.  I've begun to phase myself out of mixing altogether for this reason.

I was fortunate that my AN ear is my right ear. I'm not sure I could have continued playing violin if it had been the other ear. You need to hear details to be able to play well. Since the violin is on the left side, I can still hear those details. In some cases, the deaf ear actually helps me as I can sit next to ANY instrument (no matter how loud) on my right and still hear all the details I need. I've learned to position myself so that I have people I need to hear on my left, and the louder musicians on my right. It works well, and can help out other musicians as well, since they can use me as a buffer 

I cannot use in-ear monitors. I've tried but am just unable to connect while being closed-off with the ear buds. So when I play with a monitor I have to use a floor monitor.

Tinnitus is a *****. It is always there, and the louder the acoustic input in my good ear, the louder the tinnitus in my deaf ear. I've accepted that that's just the way it is. I can ignore it most of the time, but it does sometimes get distracting when I'm trying to listen critically with my good ear. I can even change the pitch of it by moving my eyes in certain directions (don't know why this is, but it is apparently common).

So the answer to the original post is yes, listening and performing music is VERY different after becoming SSD. It takes time to make this adjustment, so have some patience. If you can keep a positive mindset, you'll be back to making music again soon. 

Looks like the OP was going to have surgery about 4 months ago. So if you get back to reading this, just know that from where you are right now, it does get better.  Hang in there.  I'd love to hear from you about your own recovery experience...

[CHD63]

We musicians, when it comes to hearing, are much more keenly aware of all the pitches around us.  That is what makes hearing loss have a bigger impact for us.     Maybe we are also a bit more perfectionistic, as well, and that does not help matters much.

I have pretty much adjusted to music not sounding the same as before.  The screaming tinnitus is another matter.  To answer phantagrae's question:  I never had tinnitus until after my first surgery.  It became louder after my second surgery.  However, there have been several AN patients who have posted on this forum over the years who stated they do not have tinnitus, even after surgery.  So, it is a unique phenomenon with individuals.  Tinnitus is also a common result of age-related hearing loss.  It has to do with how one's brain deals with the absence of certain pitches.  Like dvPete, I can often ignore it when I am busy, but in a loud environment (loud music, restaurants and crowds of people are the worst) it obliterates my ability to sort out unwanted sounds from what I need or want to hear.

I am determined not to let these issues turn me into a hermit so I persevere and smile a lot!   

Clarice

[Basia1987]

Hello,
I'm gonna add to the old topic. Maybe some of the musicians writing here are still around.
I'm a fellow musician (singer, pianist) from Poland, living in Germany. I was diagnosed with a large AN (2.8x2.5x2.2 cm) in October last year and operated via retrosigmoid approach in an attempt to maintain my hearing in December. I believe after waking up from the surgery I could still hear. Unfortunately a few days post-OP I could feel the hearing is much much worse. A hearing test confirmed a complete hearing loss. What a heartbreak. On top of that I have a loud tinnitus that reacts to sound - when I'm in silence it's gone or very quiet, when I hear sounds it becomes louder, corresponding to the loudness of whatever I am hearing. I am still coming to terms with what happened to me and haven't tried playing piano. I tried singing a bit and it feels strange hearing myself only on one side. I also don't like to listen to music too much, since it's aggravating my tinnitus and is tiring... I do hope this will get better with time...

If anyone is still active here, I wanted to ask you, if you have experience with hearing aids or bone anchored systems and how good are those? I tried a hearing aid in my pre-surgery time and was surprised how bad it sounded (it wasn't cheap at all! I think from Oticon) - artificial and with noticeable latency. I wonder if there is anything that does provide help and doesn't sound bad to the musician ears.

Another question is - if you suffer from tinnitus that reacts to sound - how do you deal with it? Did you learn to ignore it with time or did it become less severe? Mine so far feels a bit like exploding in my head! Any input appreciated 

[MarlaB]

My tinnitus responds to sound, so when I know I'll be in a loud place, I use an ear plug in that ear, even thought I can't hear on that side. I didn't catch if your tinnitus was in your good ear.

wishing you the best...

Marla

[Basia1987]

I have mild tinnitus in both ears, but the one that is roaring when I'm in a loud place and that gets louder for a second in response to hearing anything, is in my deaf ear.

[MarlaB]

Same here. Have you tried an ear plug in the deaf ear?

[Basia1987]

Yes, my first idea is that the nerve sends some wrong signals and that's why there's tinnitus but blocking sounds from coming to the deaf ear doesn't change anything, unfortunately  only blocking sounds from the hearing ear helps...

[Director]

I wanted to let readers on this thread know about the ANA's Support Group for Musicians. This group meets virtually and the next meeting is June 4 at 6 pm ET  and will feature Q&A with Dr. Walter Kutz of UTSW.  Dr. Kutz is an otologist, experienced with hearing devices.  Additionally, his undergrad was in music, so should make for an interesting discussion.  Hope you can join us. 

https://www.anausa.org/programs/support-groups/upcoming-events/eventdetail/1421/-/support-group-for-musicians[url]]https://www.anausa.org/programs/support-groups/upcoming-events/eventdetail/1421/-/support-group-for-musicianshttp://

[Basia1987]

Great, thanks for letting us know here. I will join the event for sure!