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Hearing loss and speech changes

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hey Guys,

I just want to ask, have any of you lost hearing from Cisplatin and/or rads? If so, did the quality of your voice change? I lost large portion of my hearing and understanding of certain letters in 2010, 10 yrs post cancer, it was probably going for sometime but did not require hearing aids till that point. I don't remember if I started having voice issues right away or if it occured as time progressed. My voice to start was nasal(a little more than that of the Philadelphia accent) but since it has become EXTREMELY nasal(I did have NPC) and combination deaf person sound quality. My ENT said my voice shouldn't have changed since I was normally a hearing person and said most likely from Gerd acquired during treatment. Today my Speech Therapist said it from hearing not my conition of dysphalgia, which then ENT said due to weakened vocal cords? I don't know, I was hopeful my voice would return to normal annoying nasal and not hard to understand as it is now?

So anyone have issues with this, HELP ME OUT! Thanks! Congrats again to all the NEDS this week and the ones to be announced in the future!

God Bless you all,

Rachel

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

the clue is in your description of the nasal quality of your voice.  Changes in vocal cords do not impart a nasal quality, they rather convey a hoarseness or a lack of volume.  GERD affects cords, so that would seem out as well.  Hearing loss in an adult will not change phonition, but will rather change volume as well.  So I'm guessing there has been a basic change in air flow in the upper column, and when you say you are nasal, you really are nasal.  I have that change as well.  My soft palate doesn't close properly, for eating nor for voice, so I tend to aspirate if I'm not careful, and I am nasal in my speech.

 

best

 

Pat

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Pat,

Thank you for respondng, I was aspirating, not now and still going for swallowing function, not close to strong enough to trust myself to eat outside of treatment. Part of that issue is soft palate not closing and voice box not rising. Air comes out my ears, nose and throat, which is what I said all along, I am understanding you correctly, is that what you are saying? It is more to do with the muscles not working properly, contracting the way they should, therefore as throat progresses so should my voice? I would not expect either swallow or voice to be perfect, but vast improvement in both is hopeful?

Rachel

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

I didn't do a very good job.  The soft palate is where this problem lies.  I reread my post, and it would seem I was trying to say aspiration is related.  It isn't.  You have stated it better than I did, but we understand the problem.  When I eat, I can only partially swallow.  Even stuff like cream of wheat.  Half goes down, and the other half sits there and teeters right at the back of my throat.  If I am not careful, some will go above my soft palate and I can actually blow it out my nose.  Some will aspirate if I am not careful.  Talking and eating are mutually exclusive to me.  People around me know it takes all my concentration to eat.  But yes, if the soft palate does not close properly, food goes up and out, and the voice gets that nasal quality.  I don't think that swallowing exercises will help that.  Swallowing exercises help with getting food past the point of aspiration, a different mechanism.

KTeacher
Posts: 991
Joined: Jan 2011

I had changes in hearing after my first go around in 2010.  Tiny hearing loss but very sensitive to sounds.  I keep ear plugs handy.  Some sounds just plain hurt and then I have ringing in my ears for some time to follow (sometimes a week).  My changes to speech were more likely due to surgery.  One inch of my lip was removed, 50 stitches to reattach.  I cannot whistle or blow out candles!  th sound is difficult as are a few others.  Muscles seem to be pulling my face to the right, or nerve damage from the last surgery and treatment.  Hopefully I will be around in 12 years to let you know about other changes that come up!

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

You will be, BELIEVE! Its not just for Santa anymore! Lol

Thanks and God bless,

Rachel

corleone's picture
corleone
Posts: 173
Joined: Jul 2012

I had hearing loss, big time. At 46 years my hearing was very good (can’t say perfect). I was capable of hearing the higher frequency sounds much better than most people. Cisplatin hit me hard, I lost ~50%. There is a brusque decreasing in hearing at higher than 1 KHz sounds – a steep ski slope loss. I can still hear extremely well the grave sounds, but I am missing some consonants like s, t, k. Female voices are more difficult to understand.  Also I have big problems understanding anything in a noisy environment. I would definitely need hearing aids, but I am trying to see how it works for a while – seems that I got used with that, and people who know me with me. Unfortunately I can’t enjoy music anymore, as higher pitched sounds seem much distorted. I also have some voice changes; it changed from tenor to baritone (I don’t sing, I am just saying), and raspier.

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Corleone,

Sorry that I laughed when I read your response, but my hearing test graph looks exactly like you said,"a ski slope". Same issue higher pitch gone! Smoke alarms forget it. Pretty much the same consonants that you have lost. I was probably where you are before it got so bad I couldn't hear anything without an amplier then real hear aids. Your voice sounds more like what Pat said if your vocal cords were affected. Mine is most definitely nasal. If I speak slower and pronounceate, I am understandable, unfortunately, my whole life(41 now) I have always spoken at the speed of light! I grew up during the 80's and we used to tell our parents it was code so they couldn't understand us, but now if I speak at my normal pace it is a waste of breathe. That pharse "hard to teach an old dog new tricks" so true! When I am around strangers its easy, but with family and friends I start out slow and then oops not audible?!?!'=*&^

:opefully as I progress in swallowing, I progress in voice quality as well!

Keep eye on those ears!

God Bless,

Rachel

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

When I had my hearing test my ENT was reading the results and he said "I have good news and bad news."  I said "well give me the bad news."  "The bad news is you have a 45% hearing loss in your left ear and a 20% hearing loss in your right ear."  I said, "what the hell could be the good news?"  He answered, "the frequencies you can't hear relates to women and small children."

J.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

My voice will forever be changed due to the fact that my CA was on my vocal cords and surgery and rads left me terribly raspy. Before my condition turned to SCC it was carcinoma in situ and I had a total of 10 surgeries to remove lesions. On the 11th surgery it came back as SCC so treatment started. But all those surgeries have just ruined my voice. I have been going to speech therapy for quite some time to help me learn how to use my voice and not strain so that I have the best voice possible. Everyone who meets me thinks I'm sick. I've gotten so tired of explaining so now I just say, " yes I'm getting over something" it's just easier that way. People who know me say that I sound like Demi Moore....that'd be great if I could have her $$ too haha

Now as for hearing loss....I had rads and only Erbitux but my hearing has for sure gotten worse. It's getting to the point where I'm constantly watching people's mouths when they talk because otherwise I miss half of what they are saying. My hearing used to be stellar! If someone mumbles, forget it I just can't pick it up. So I guess rads would be what I would blame but I'm not even sure if that's possible.

Now here's another weird thing....my vision also got worse! During treatment I never felt good enough so I didn't want to take the time to deal with my contacts so I just wore my glasses which I never wore much. I noticed they were not as clear as my contacts but I simply attributed it to me just feeling like crap. I wasn't due for my eye exam until a few months after treatment would end so it never occurred to me that it could be my vision getting worse. I just kept saying, "these stupid glasses are not right"
After treatment was over and I felt good I ordered a new batch of contacts. I couldn't wait to take the dang glasses off. When the contacts came I thought for sure there was a mix up in the order. I'd been ordering all my contacts from this Online site. After a while of thinking I was losing my mind, I made an appt with the eye doc. He said my vision had gotten worse indeed but he said we just couldn't blame treatment on that nor could we rule it out. Could be that my vision simply got worse. Could be age related because I am getting older who me???
We are all just a mess here!
Good luck with your hearing and speech
I'll let you know if I hear of any special tricks to help ya

Billie

Mikemetz's picture
Mikemetz
Posts: 355
Joined: Nov 2011

I had the same long period of thinking that my eyes were getting progressively worse.  Well, they were!  Turns out that I was prematurely developing cataracts.  The cause was determined to be from the corticosteriods I took during rads to keep the swelling down.

Chemo + rads, "The gifts that keep on giving"

Mike

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Yes they did check me for cataracts but all seemed ok on that front. Frankly....I've had enough of the gifts Undecided

Billie

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Billie,

OH GREAT NOW I HAVE TO WATCH FOR VISION TROUBLE, JEEZ! Lol

Reaaly didn't know that could be an issue, so now it finish with swallowing work, move on to the envitable full teeth pulling and dentures @ 42, and then Eye checkup. This darn rad, and all its paybacks, I was never mean to it, I didn't give it a hard time why can't it just leave me alone! Lol

Take care sweetie and God bless,

Rachel

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

I have see the same ENT oncologist for 15 years.  So he knows me and my wife quite well.  Last year my wife complained to him that I was having trouble hearing her.  His response was "and that's a problem because.....?  

 

You just had to be there.

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

Hi Rachel,

I'll be able to tell you first hand in a few months whether or not the treatment has compromised my voice and/or speech. My team is focused on eradicating the cancer and preserving my voice without lessening the effectiveness of the radiation or chemo. My RO and team are very optimistic that we'll do just that. Apparently so optimistic that I've been invited to perform at a H&N event next year at Johns Hopkins :) 

On Monday, I'll be getting my last chemo infusion (Cisplatin 80mg). It's what my MO calls a "moderate" dose. I've yet to notice any significant hearing anomalies or loss.  I see my MO today and I'll be asking about a follow-up hearing exam to compare to the baseline test I had done when I started. 

My voice is a casualty at this time. It's more of a horse whisper as opposed to a voice. My team sees this as completely normal and expected considering the treatment plan. Speech has been a small issue as the biopsies and surgeries has caused swelling. The swelling has made certain letters/words sound a little off. My Speech/Language Pathologist is confident all will return to normal once I fully heal. 

I had to chuckle at the description of your voice :) I grew up in S Jersey and lived in S Philly for close to 14 years. I know the accent you speak of quite well. More of the NE Philly nasal whine as opposed to the S Philly Adrian Balboa screech ;)  It's actually an interesting topic. Certainly, anything that has to do with your nasal cavitites could have an effect on the quality of your voice. Weakening of the vocal cords regardless of the reason can affect enunciation. I can pose that question to my Speech/Language Pathologist next week and get an opinion. 

Keep up the good work Rachel. It seems with each post/update, you're taking another step forward. 

"T"

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

I thought the nasel as more of a "Main Line" or "Bryn Mawr" accent rather than North East.

T Congrats at reaching your last Chemo.  Big accomplishment.

Rachel, you continue to amaze me with your progress and determination.  You Rock Girl!

 

Joe

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

One, compared to many I feel bad even saying this....I only had Erbitux for treatments and rads, no surgery.

...so I have no hearing loss though maybe I should tell my wife I do :)  ....but the one thing I have noticed lately is a "swelling" although mild, on the left side of my neck (CT showed nothing, Onco said he did not feel / have any concerns either) but I noticed I am having difficulty swallowing a few pills that before I had no problem with????

I'm eating as usual I think, but like Pat said I seem to have to really focus more now on the swallowing....I love Pat's descritption, right on with me too some of the time but not all...I swallow and it's like the food goes down but not all of it, just hangs up there and when I clear my throat it comes back up but not through the nose.

Anything I can do?  Something I should say?  Could it get worse?

 

Rachel, sorry no help with your issues, like I said, I had no surgeries and only Erbitux for my treatments.... 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Tim,

Its okay, Pat real summed up the answer for me. I don't know anything about your chemo and happy you had no surgery, it must mean they caught it earlier than mine, and that is great!

I as well don't know what to offer you as far as help, maybe its lymphodema, where your lymph nodes swell with fuild and cause puffness or swelling to radation area. They warned me in 2000 it could happen and it didn't, when I started this speech treatment for swallowing they sent me for lymphadema therapy(a getle massage to move fluid out) but my neck had hardened from surgery and scarring no fluid in there so I don't have that. If you do, normal and treatment is pleasant.

If you see your doc you should mention swallowing difficulty. Mine was coming on for LONG time before I was aspirating so much I was malnourished,dehydrated and pnuemonia(its amazing how your body goes for so long with bad stuff happening) so I would get that checked especially if just started, stay ahead of anything you can!

Take. Care and God Bless,

Rachel

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

T,

I hope your treatment seems to you to have flown by as it did for me, but I am sure it didn't! I am so happy that you are nearing the end, you've been through too much and took it like a "Man" (really a woman, its proven we are stronger physically!lol).

I pray every night that you never can answer my question either with hearing or voice. I've prayed for your ability to perform as soon as you heal!

You tell me I inspire you, and yet you faith, your sense of humor and your strength you inspire me beyond words.

Rock on my friend, finish with a Bang, and make sure you keep us up to date with count down so we all celebrate the day you ring your bell!

Full and complete recovery I pray the Lord blesses you with!

God Bless,

Rachel

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

t, i can't believe u r about done w/trmnt!!  it seems like u just started (i'm sure it doesn't feel that way to u).  i'm so happy for u and can't wait for time 2 pass so u can test ur voice.  i'm sure it will be ok.  hang in there, u can now c the lite at the end of the tunnel.

God bless,

dj

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