Playing/Singing after AN treatment

[bacrane2]

Hi,

My radio surgery (CyberKnife) is scheduled for next week, and I'm a singer and an instrumentalist who plays piano and guitar.  I'm interested to find out how other musicians like me are managing with singing and playing instruments after treatment.

Honestly, I'm quite concerned about loosing musical ability--especially singing--as it depends partly on getting feedback from both ears.  Unlike singing, I think the instruments I play (piano and guitar) may still work even if I have eventually have little or no hearing in one ear.  That's because these instruments are or can be tuned correctly when played. 

Again, I would really appreciate hearing from other musicians.

Thanks!

Beverly

[CHD63]

Hi Beverly and welcome to this forum .....

I can appreciate your concerns related to being a musician.

At the time of my diagnosis, I was a church organist of long-standing, as well as a singer.  The first symptoms of my AN were off balance/disoriented feelings ..... no hearing difficulties.  I was not properly diagnosed until about a year and a half later, when I began to have that "stuffed ear" feeling.  An audiogram revealed a 20% hearing loss in my left ear, but I still had 100% speech discrimination.  The MRI with contrast showed a 2+ cm AN, already outside the internal auditory canal, approaching the brain stem.  Because of the size, my diagnosing ENT thought I should be a candidate for either radiation or surgical removal.  However, when they took my history, and found out I had had massive doses of "radium" to my head as a child, radiation treatment was taken off the table as a possibility.

So, in responding to your concerns, I have had no experience with radiation treatment for my AN.  Hopefully someone else will reply here as to their experience as a musician with radiation treatment and/or possible hearing loss from it.

In my case, I have an Oticon Medical Ponto Pro hearing device.  The abutment was put in at the time of my second surgery three years ago.  My hearing loss came in stages ..... from 100% pre-diagnosis, to 80% pre-first surgery, to 20% post-first surgery, to 0% post-second surgery so my brain had several adaptations to make.  Remember, hearing is actually a "brain thing."  The ear is just the receiver of information/sounds.  I have a wonderful audiologist who explained all of this to me.

How this affected my musical performance .....  After the first surgery, I was initially very frustrated.  Everything sounded out of tune.  Prior to that first surgery I had "perfect pitch."  It has never returned.  It took probably over a year before my brain finally realized it needed to sort out these lesser sounds coming from the AN side.  I successfully sang in choirs, but I worked with the directors to position my placement to best advantage.  Unfortunately following the second surgery, I have not been able to sing in a group, but not because of my hearing.  There is a weakness of my left vocal cord that has caused me to have little stamina for singing for any length of time.  However, because of my Ponto (bone-anchored hearing device) I am still able to play the organ/piano.  Again, it took my brain awhile to adjust to hearing the sounds from the Ponto, mixed with my natural, good hearing from my non-AN side ear.

Sorry to be so long-winded when my situation is not the same as yours, but I hope you can take what applies to you.

Let me know if you have other thoughts/concerns.

Thoughts and prayers.  Clarice

[lorigasper]

Hi Beverly -

First, let me wish you well in your upcoming treatments.  Second, let me say that you'll probably have to adjust to a bit of a new normal with your music, but you should do fine.

I am a church organist and pianist.  With piano, I really have only had to adjust to the fact that my hearing aid (CROS) makes the piano sound out of tune.  It must pick up on particular overtones.  I just take the aids out and the piano sounds fine.  One of my challenges was reading/processing the musical notation post surgery, but that is pretty much back to normal.  That only lasted a few weeks, as I recall.  I just eased back into playing.  Our music director was a gem.

The organ playing is more challenging to me (but I still play it every week!).  I have a sound man that I trust to tell me if the instrument is too loud or soft - I really can't tell the way we're set up.  I have found it helpful to have an extra speaker that pipes the piano sound to me when I'm on the organ.  With my SSD, I just can't discern the musical ambiance in the room like I used to and sometimes I need it so we can stay together.  I'm fortunate to have some presets on the instrument that I used when my hearing was good, and that is a guide for me.  If you have a feature on the organ that will let you record your playing and listen to it in the room, it may be a feature that is helpful to you over the next few months.

It may be helpful to find a friend with discerning ears to help you a bit as you're getting into the swing of things once you return to playing.  I pray all goes well with your treatment and your music!

Lori

[bacrane2]

Thank you--Clarice and Lori--for responding about your musical lives.  Also thanks for your good wishes for my upcoming treatment.

First, Clarice, I appreciated your detailed account of being able to sing in choral situations after your first surgery but not after your second because of the severing of one of your vocal chords during procedure--but not because of hearing.  Since you are the only singer I've heard from, I really value these comments.  I know everyone is different in their physical makeup and response to treatment, yet it is hopeful to hear that you slowly retrained your brain to process lesser vocal sounds from AN ear and continue singing with others after first surgery even with significant hearing loss in that ear. Though you no longer sing, you continue to play piano with a Ponto which is encouraging to hear.

Lori, you keep playing both piano and organ even with adjustments such as taking out hearing aid for piano and getting feedback from others when playing organ. Also very encouraging to hear.  As for taking out CROS hearing aids for playing piano, that sounds familiar.  I've had a Phonak for AN ear for a while (they also make the CROS system) and don't wear it when doing music either because of high end sound distortion. 

I also just talked to a professional sax player who has a lot of hearing loss in good ear and had CyberKnife for an AN in other about a year ago.  He still plays on pitch with no problems which was positive to hear. He did get fitted for CROS just recently...for social situations.

Anyway, it's good to hear from both of you about adjusting to a very different sound mix while still continuing to play/perform music.

Thanks so much!!

Bev

[CHD63]

Hi Bev .....

I need to clarify something ..... my vocal cord was not severed, it just does not close completely as it should anymore, which means I have to work very hard to make it work ..... causing fatigue of my voice too quickly to sing in a choir.

Also, I put my Ponto Pro processor on first thing in the morning after my shower and do not take it off again until I go to bed.  That really is the best way to train the brain to adapt to the different sounds coming in and make the adjustments when coordinated with natural hearing from the other ear.  I have no sound distortion with my Ponto.

Clarice