Oh well I'm official heading towards deaf

pascotty
pascotty Member Posts: 174 Member
edited March 2014 in Head and Neck Cancer #1
Had my hearing test today, they confirmed what I already knew, I'm DEAF, well, not totally deaf, but the letters S and F I cannot hear at all, start a hearing aid trial next week, which they believe will help a little so hopefully this will help. It was the cisplatin chemo drug that did it. The tinnitus is awful at times when it changes pitch, gives me a little fright, but, all in all, I can still talk and hear, just as long as I can lip read the whole package comes together, but, in a room of more than 3 people it can be a bit of a muffle, does anyone else have a similar Side effect xxxxx

Comments

  • RushFan
    RushFan Member Posts: 224
    #2
    Not as bad...
    But I have lost more of my hearing. My left ear is probably down to 30%...before treatments it was at 50%, scarring from multiple ear-infections / swimmer's ear and live music. My right side is o.k., but not normal by any means. It has become more of a problem. I don't hear conversations as well in crowded rooms, but...if the neighbors are throwing a party in the backyard, I can sleep on my right side and not hear a thing. Can't hear my wife either.

    I've had tinnitus for years, it's worse now, but fortunately it does not bother me. Just accustomed to it I guess.

    Best to you, hope the aid makes a difference.
    Chuck.
  • Greg53
    Greg53 Member Posts: 849
    #3
    RushFan said:

    Not as bad...
    But I have lost more of my hearing. My left ear is probably down to 30%...before treatments it was at 50%, scarring from multiple ear-infections / swimmer's ear and live music. My right side is o.k., but not normal by any means. It has become more of a problem. I don't hear conversations as well in crowded rooms, but...if the neighbors are throwing a party in the backyard, I can sleep on my right side and not hear a thing. Can't hear my wife either.

    I've had tinnitus for years, it's worse now, but fortunately it does not bother me. Just accustomed to it I guess.

    Best to you, hope the aid makes a difference.
    Chuck.

    Lip Reading
    Lost a lot of my hearing in right side due to Cisplatin also, but not as much as you or Chuck. I'm kinda, sorta getting used to it. Definitely learned how to read lips. Learned to do it almost subconscously, never thought to do it. Audiologist wants me to get hearing aids, but I'm going to wait til I'm a year out to see if it gets better (6 months post treatment now). Tinnitus was really driving me nuts for a few months also. Hasn't got any better but I'm so used to it now it doesn't bother me near as much. Just another "thing" I guess.

    Good luck with the hearing aids. Will be interested to see if you think they're worthwhile.

    Positive thoughts.
    Greg
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #4
    Greg53 said:

    Lip Reading
    Lost a lot of my hearing in right side due to Cisplatin also, but not as much as you or Chuck. I'm kinda, sorta getting used to it. Definitely learned how to read lips. Learned to do it almost subconscously, never thought to do it. Audiologist wants me to get hearing aids, but I'm going to wait til I'm a year out to see if it gets better (6 months post treatment now). Tinnitus was really driving me nuts for a few months also. Hasn't got any better but I'm so used to it now it doesn't bother me near as much. Just another "thing" I guess.

    Good luck with the hearing aids. Will be interested to see if you think they're worthwhile.

    Positive thoughts.
    Greg

    Hearing Aids
    Be sure to become acquainted with all the various designs for hearing aids. I have a pair whose body is behind the ear; but is so small as to be invisible. A wire leads from the body into my ear canal. At the end of the wire is a speaker. So the speaker is pointer directly at my ear drum. This is the best design for high frequency hearing loss. But these aids are extremely expensive at the present time.

    Most behind the ear hearing aids have the speaker in the body. And a tube leads from the speaker into the ear canal. Well the tube, which bends, distorts the high frequency. And because the speaker is near the microphone, there can be trouble with feedback.

    Hearing aids the fill and seal the ear canal (totally in the canal) are good for low frequency loss, or across the board loss. When you seal a sound producer in an enclosed space, the low frequencies are amplified primarily. That's why you hear the base in the car driving by. This would not be a good aid for someone having trouble distinguishing "f" from "s" in my opinion.

    Finally, I must point out that audiologists use the words speaker and microphone differently. And I forget their definitions. I'm using the terms like in stereo-hifi. I wish I could remember the audiologist's terms; but I confess, they didn't make sense to me at the time so I didn't remember them. This is my defect; not a defect of audiology.

    I believe that all hearing aids MUST come with a 30 day trial period. But I could tell the right one within minutes in the audiologists office. I heard the sound of her picking up a piece of paper for the first time in years. Yes a person picking up a piece of paper does make a sound.

    I got my aids while I was still working. I could not understand the speech of foreign-born females, my peers. With the aids, I got what they were saying most of the time.

    There are of course, inexpensive solutions to special circumstances, such as watching TV.

    Good hearing aids are very very expensive. I could not afford to replace mine today. But I would try a pair out so that you can judge what you are buying and how good your hearing might be.

    One last thing: hearing aids require at least weekly cleaning (by the patient); and occasional professional cleaning (once a year). You can't believe what's in your ear canal. And whatever is in your ear canal eventually gets into the hearing aid. Rick.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Tinnitus
    But I had a little of that going into treatment. For me the Cisplatin didn't really increase it.

    Glad you survived with only these few side affects...definitely something that you can live with, but I know it's still something to deal with.

    Best,
    John
  • JUDYV5
    JUDYV5 Member Posts: 392
    #6
    Deaf
    I know I have significant hearing loss from the cisplatin. My folks were deaf so I have always known how to sign and read lips so I can function. I do ask people to repeat themselves a lot. I was waiting to get the hearing test. The medical oncologist said that it could come back with time (today is 4 months post treatment). In crowds everything is just a mumbled hum.
  • delnative
    delnative Member Posts: 450 Member
    #7
    JUDYV5 said:

    Deaf
    I know I have significant hearing loss from the cisplatin. My folks were deaf so I have always known how to sign and read lips so I can function. I do ask people to repeat themselves a lot. I was waiting to get the hearing test. The medical oncologist said that it could come back with time (today is 4 months post treatment). In crowds everything is just a mumbled hum.

    Cisplatin is rough
    I have significant hearing loss in my left ear and a relatively minor loss in the right. The tinnitus was really noticeable during treatment, but it's nowhere near as bad now. Plus, I've gotten used to it.
    FWIW, the audiologist couldn't say whether my hearing loss was solely from the Cisplatin, or if was due to the fact that I've been exposed to a lot of gunfire and a lot of REALLY loud rock 'n' roll back in the day.

    --Jim in Delaware
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    Hi pascotty


    Ben wearing the hearing aids now for 4 years, it’s not so bad, I pull them out when I want some peace and quiet. Just another part of the new normal you.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #9
    Hondo said:

    Hi pascotty


    Ben wearing the hearing aids now for 4 years, it’s not so bad, I pull them out when I want some peace and quiet. Just another part of the new normal you.

    I really should get my
    I really should get my hearing checked. I've had ringing in my ears for twenty yrs mostly due to live music, and loud headphones and level 42 in the car. Also my mom did damage to my left ear with a qtip. She punctured something, I forget what, but I remember it bled. I've not learned my lesson with the loud music either. I get yelled at by my friend all the time cause I'm blasting the radio or have my earphones on too loud.
  • denistd
    denistd Member Posts: 597
    #10
    sweetblood22 said:

    I really should get my
    I really should get my hearing checked. I've had ringing in my ears for twenty yrs mostly due to live music, and loud headphones and level 42 in the car. Also my mom did damage to my left ear with a qtip. She punctured something, I forget what, but I remember it bled. I've not learned my lesson with the loud music either. I get yelled at by my friend all the time cause I'm blasting the radio or have my earphones on too loud.

    deaf
    I lost some hearing too and suffer from tinnitus, but not too bad, it comes from the cistplatin and standing in front of a Marshall amp and playing bass all my life. I am use to it and only hear it when I think of it. There could be fluid behind your eardrums.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #11
    denistd said:

    deaf
    I lost some hearing too and suffer from tinnitus, but not too bad, it comes from the cistplatin and standing in front of a Marshall amp and playing bass all my life. I am use to it and only hear it when I think of it. There could be fluid behind your eardrums.

    Frustrated musician wanna be.
    I tried to play bass for a couple years. Wasn't very good. Was much better at singing. Lol. I was around Marshal amps too. Mostly dating musicians. :)
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #12
    Greg53 said:

    Lip Reading
    Lost a lot of my hearing in right side due to Cisplatin also, but not as much as you or Chuck. I'm kinda, sorta getting used to it. Definitely learned how to read lips. Learned to do it almost subconscously, never thought to do it. Audiologist wants me to get hearing aids, but I'm going to wait til I'm a year out to see if it gets better (6 months post treatment now). Tinnitus was really driving me nuts for a few months also. Hasn't got any better but I'm so used to it now it doesn't bother me near as much. Just another "thing" I guess.

    Good luck with the hearing aids. Will be interested to see if you think they're worthwhile.

    Positive thoughts.
    Greg

    HEARING LOSS
    Greg, hope all is well.

    I take my 3rd and last Cisplatin dose a week from tomorrow. Right now I have some occasional ringing in my right ear that does not last very long. Is it safe to say that if I do not experience any other hearing issues after my final Cisplatin treatment, that I should dodge the hearing loss or more severe side effcts with hearing?

    Best!!

    Mike
  • Greend
    Greend Member Posts: 678
    #13
    ToBeGolden said:

    Hearing Aids
    Be sure to become acquainted with all the various designs for hearing aids. I have a pair whose body is behind the ear; but is so small as to be invisible. A wire leads from the body into my ear canal. At the end of the wire is a speaker. So the speaker is pointer directly at my ear drum. This is the best design for high frequency hearing loss. But these aids are extremely expensive at the present time.

    Most behind the ear hearing aids have the speaker in the body. And a tube leads from the speaker into the ear canal. Well the tube, which bends, distorts the high frequency. And because the speaker is near the microphone, there can be trouble with feedback.

    Hearing aids the fill and seal the ear canal (totally in the canal) are good for low frequency loss, or across the board loss. When you seal a sound producer in an enclosed space, the low frequencies are amplified primarily. That's why you hear the base in the car driving by. This would not be a good aid for someone having trouble distinguishing "f" from "s" in my opinion.

    Finally, I must point out that audiologists use the words speaker and microphone differently. And I forget their definitions. I'm using the terms like in stereo-hifi. I wish I could remember the audiologist's terms; but I confess, they didn't make sense to me at the time so I didn't remember them. This is my defect; not a defect of audiology.

    I believe that all hearing aids MUST come with a 30 day trial period. But I could tell the right one within minutes in the audiologists office. I heard the sound of her picking up a piece of paper for the first time in years. Yes a person picking up a piece of paper does make a sound.

    I got my aids while I was still working. I could not understand the speech of foreign-born females, my peers. With the aids, I got what they were saying most of the time.

    There are of course, inexpensive solutions to special circumstances, such as watching TV.

    Good hearing aids are very very expensive. I could not afford to replace mine today. But I would try a pair out so that you can judge what you are buying and how good your hearing might be.

    One last thing: hearing aids require at least weekly cleaning (by the patient); and occasional professional cleaning (once a year). You can't believe what's in your ear canal. And whatever is in your ear canal eventually gets into the hearing aid. Rick.

    Hearing aid
    They gave me a behind the ear unit with a tube that did not block the ear canal, just a straight tube. This helps the tinitis and overall hearing. I was unable to have the part in the ear that "fills" the canal because then I constantly felt like I was at 35,000 ft in an airplane and couldn't get the pressure equalized. I guess I'm just used to the ringing now.

    Agree with Hondo, when the wife gets upset I simply turn them off or take them out.
  • bchapman
    bchapman Member Posts: 4
    #14
    I have lost most of hearing
    I have lost most of hearing in my left ear due to radiation therapy. Sams club has an online hearing aid center that sells hearing aids for a few hundred instead of thousands. I have tried the both and actually like the Sams club brand. I know the hardship, especially when you are in an important meeting at work. Not being able to hear and repeatedly asking people WHAT? is demoralizing. Just know that people, for the most part, are extremely understanding.
  • Pam M
    Pam M Member Posts: 2,196
    #15
    luv4lacrosse said:

    HEARING LOSS
    Greg, hope all is well.

    I take my 3rd and last Cisplatin dose a week from tomorrow. Right now I have some occasional ringing in my right ear that does not last very long. Is it safe to say that if I do not experience any other hearing issues after my final Cisplatin treatment, that I should dodge the hearing loss or more severe side effcts with hearing?

    Best!!

    Mike

    I Had It, Too
    Mike,
    I, too, had occassional ringing that didn't last long. Right now, I don't remember the last time it happened. Hope it's the same for you.

Discussion Boards