hearing loss

SmithMama2
SmithMama2 Member Posts: 48
edited March 2014 in Head and Neck Cancer #1
Kevin had a follow-up appointment with the audiologist yesterday. Kevin had a baseline hearing test before he started chemo. The cisplatin chemo he had did affect his hearing, which is why they switched his treatment plan mid-way to carboplatin and taxol. The follow up shows that he has hearing loss in the upper range of sounds, and he continues to have a constant ringing in his ears. He can hear spoken word fairly clearly, unless it is very softly spoken or the voice is high pitched.

The problem for Kevin is that this high range loss affects the way he hears guitar sound. Before the cancer diagnosis, this was his passion. He played guitar every day, sometimes for hours at a time. And when he wasn't playing guitar, he was making guitars. All the components of a guitar have a tone, and he spent a great deal of time knocking the parts to make sure their ring was resonate. This insured that when the guitar was assembled, it would have beautiful ringing tone instead of a flat, dead tone.

We recently attended a SPHONC support group meeting for head and neck cancer patients, and his audiologist was the speaker. She brought an array of hearing aids, and after the meeting he was really excited about the possibility of regaining his hearing again. Playing guitar is not very enjoyable to him because of the change in the sound, so he was very hopeful that the hearing aids would improve this for him.

Turns out that hearing aids are really only focused on improving the clarity of the spoken word, and his audiologist didn't know much about how guitar sound might be improved. In her years, she has never had a patient who played/made guitars who needed this kind of support, so she really didn't know if a hearing aid would help his situation. It is an expensive proposition to buy a set just to see if it might work. She said she would do a bit of research on her part, and we were asked to do the same to determine if there was a product that seemed to be a good match for Kevin's needs.

So my question to you all is does anyone have experience or suggestions about the improvement of hearing upper level non-human sound with hearing aids? What brand? How well does it work? What are the continued challenges?

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Mama
    I know the feeling; I use to love playing with my guitar but have not done it in years for the same reason. Just can’t hear what I am playing anymore and can’t sing because of the damage by the radiation and chemo.

    I just got fitted with some new hearing aids last week and I am waiting for them to come in. I think I will bring my guitar when I get fitted and see how well the sound is while playing maybe they can adjust one of the setting for guitar playing. I never was very good at playing but just loved the sound of strumming the strings at night for relaxation. I will let you know the outcome.

    Take care and tell Kevin hello for me.
  • SmithMama2
    SmithMama2 Member Posts: 48
    #3
    Hondo said:

    Hi Mama
    I know the feeling; I use to love playing with my guitar but have not done it in years for the same reason. Just can’t hear what I am playing anymore and can’t sing because of the damage by the radiation and chemo.

    I just got fitted with some new hearing aids last week and I am waiting for them to come in. I think I will bring my guitar when I get fitted and see how well the sound is while playing maybe they can adjust one of the setting for guitar playing. I never was very good at playing but just loved the sound of strumming the strings at night for relaxation. I will let you know the outcome.

    Take care and tell Kevin hello for me.

    let me know
    Let me know how you like your hearing aids when you get them Hondo. What kind did you choose? Did the audiologist help you select ones that would be compatible with music? That is a great idea to bring your guitar with you to the fitting appointment!

    I located online a very nice doctor who wrote an article called "Hearing Aids for Musicians", and this is the message he sent me today. It was very encouraging.

    "Hi Karen- your husband is not alone. I receive about 3 emails a week with this very same question. The problem with music and hearing aids is that all modern digital hearing aids use a 16 bit architecture and what this means is that the loudest sound that a hearing aid can transmit needs to be less than 96 decibels. This is fine for speech because the loudest components of speech are about 80-85 decibels. BUT even quiet music has harmonics in excess of 96 decibels so distortion occurs. There are several strategies that your husband can use however to get distortion free hearing, at least from the louder music sounds. One is a new hearing aid from a company called Bernafon and its called Versa 9. It sounds like your husband would benefit from a non-occluding behind the ear style. You should print this out and show it to your audiologist. The Veras 9 has a software program called "Live Music Plus" which when implemented can handle sound levels up to 111 decibels. It just came out on the market but the musicians I have tried it on in prototype stage felt that it was much better than previous aids. You will have a trial period with the hearing aids so the expense is not what you might think. Best regards from the snowy north!"

    Marshall Chasin, AuD., M.Sc., Reg. CASLPO,
    Doctor of Audiology,
    Director of Auditory Research,
    Musicians' Clinics of Canada
    Marshall.Chasin@rogers.com


    So we will pass this info along to Kevin's audiologist to see if she can give us more info about this brand of hearing aid.

    Hondo, will your hearing aids be covered under your insurance? I haven't yet done that research, but the audiologist didn't give us much encouragement in this area.

    Karen
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    SmithMama2 said:

    let me know
    Let me know how you like your hearing aids when you get them Hondo. What kind did you choose? Did the audiologist help you select ones that would be compatible with music? That is a great idea to bring your guitar with you to the fitting appointment!

    I located online a very nice doctor who wrote an article called "Hearing Aids for Musicians", and this is the message he sent me today. It was very encouraging.

    "Hi Karen- your husband is not alone. I receive about 3 emails a week with this very same question. The problem with music and hearing aids is that all modern digital hearing aids use a 16 bit architecture and what this means is that the loudest sound that a hearing aid can transmit needs to be less than 96 decibels. This is fine for speech because the loudest components of speech are about 80-85 decibels. BUT even quiet music has harmonics in excess of 96 decibels so distortion occurs. There are several strategies that your husband can use however to get distortion free hearing, at least from the louder music sounds. One is a new hearing aid from a company called Bernafon and its called Versa 9. It sounds like your husband would benefit from a non-occluding behind the ear style. You should print this out and show it to your audiologist. The Veras 9 has a software program called "Live Music Plus" which when implemented can handle sound levels up to 111 decibels. It just came out on the market but the musicians I have tried it on in prototype stage felt that it was much better than previous aids. You will have a trial period with the hearing aids so the expense is not what you might think. Best regards from the snowy north!"

    Marshall Chasin, AuD., M.Sc., Reg. CASLPO,
    Doctor of Audiology,
    Director of Auditory Research,
    Musicians' Clinics of Canada
    Marshall.Chasin@rogers.com


    So we will pass this info along to Kevin's audiologist to see if she can give us more info about this brand of hearing aid.

    Hondo, will your hearing aids be covered under your insurance? I haven't yet done that research, but the audiologist didn't give us much encouragement in this area.

    Karen

    Karen

    The hearing aids I am getting are manufactured by Unitron model is Yuu and the price is out of this world. The old hearing aids I have are just the Basic model with only two channels and they whistle Dixie in my ears all day long. The new ones have a feedback cancellation feature that is supposed to stop the whistling affect; I hope; and have 20 channels with auto memories. I have blue cross insurance but no discount for hearing aids by them, but what they do offer is a company called Tru-Hearing where member of BCBS can get hearing aids at a little above Manufacture cost. The hearing aids I am getting normally cost 7G’s I am getting them for a little under 5G’s. I like everyone can’t afford it but I need to have them to be able to work.

    I will let you know how they work, hope to have them next week sometime.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Hay Karen
    I got my new ears yesterday does not work as well as I want them to for Music but it is not too bad either. I guess nothing man made works as good as what God gives us, but I am happy just to be able to hear the music again. Let Kevin know that I can hear the intonation of the strings with this new set of ears and I can tune the guitar but still need a little help from my Qwik tune. The Ear doctor said that he will be about to set the hearing for music better once the brain gets adjusted to the new sounds. The bad thing about these new ears is that I can hear my wife calling me from the kitchen now when she needs me to do something. I just knew it would come with a price.

    Take care and hope Kevin gets his new easy soon.
  • SmithMama2
    SmithMama2 Member Posts: 48
    #6
    Hondo said:

    Hay Karen
    I got my new ears yesterday does not work as well as I want them to for Music but it is not too bad either. I guess nothing man made works as good as what God gives us, but I am happy just to be able to hear the music again. Let Kevin know that I can hear the intonation of the strings with this new set of ears and I can tune the guitar but still need a little help from my Qwik tune. The Ear doctor said that he will be about to set the hearing for music better once the brain gets adjusted to the new sounds. The bad thing about these new ears is that I can hear my wife calling me from the kitchen now when she needs me to do something. I just knew it would come with a price.

    Take care and hope Kevin gets his new easy soon.

    Hi Hondo,
    We have been
    Hi Hondo,

    We have been moving over the holiday break from my school, so I have been away from the computer and focused on unpacking. Glad to hear that your new ears have arrived! How long does the doctor think it will take for your brain to adjust to the change in hearing? I would imagine it would be a little like getting new glasses--at first it makes you discombobulated and off balance for a week or two until you can suddenly see so much better all the time.

    Ha! Now you can't avoid that honey-do list since you can hear your wife's voice! Hmmmm, wonder if that will work for me too! Moving has been hard on Kevin. He is easily overwhelmed, so I find him sitting alot just staring into space when he had said he would help with the unpacking. Sometimes I think he gets side-tracked and forgets what he was in the midst of attempting to do. But now that most of the boxes are unpacked, I am less tense, so I can handle his sitting around better. He is happy to be in this new house. A new start. A healthy place. We have wood floors again, so he does think this has helped his ability to hear the guitar, but he still isn't picking it up to play it as I had hoped he would. I know he is wanting to get his own pair of new ears, but we will have to save money (meaning he will HAVE to go back to work at some point soon I pray) to afford such a luxury.

    Karen
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    SmithMama2 said:

    Hi Hondo,
    We have been
    Hi Hondo,

    We have been moving over the holiday break from my school, so I have been away from the computer and focused on unpacking. Glad to hear that your new ears have arrived! How long does the doctor think it will take for your brain to adjust to the change in hearing? I would imagine it would be a little like getting new glasses--at first it makes you discombobulated and off balance for a week or two until you can suddenly see so much better all the time.

    Ha! Now you can't avoid that honey-do list since you can hear your wife's voice! Hmmmm, wonder if that will work for me too! Moving has been hard on Kevin. He is easily overwhelmed, so I find him sitting alot just staring into space when he had said he would help with the unpacking. Sometimes I think he gets side-tracked and forgets what he was in the midst of attempting to do. But now that most of the boxes are unpacked, I am less tense, so I can handle his sitting around better. He is happy to be in this new house. A new start. A healthy place. We have wood floors again, so he does think this has helped his ability to hear the guitar, but he still isn't picking it up to play it as I had hoped he would. I know he is wanting to get his own pair of new ears, but we will have to save money (meaning he will HAVE to go back to work at some point soon I pray) to afford such a luxury.

    Karen

    Karen
    Glad to see you are back I was getting worried there for a while. I am still adjusting to the new ears, something are just too loud and other are too soft. I think the worse thing is I can head things my brain forgot and sometime can’t understand what it is I am hearing. My wife has picked-up on this when she sees how puzzled I get and she tell me what it is that I am hearing, things like rain, water poring, the A/C coming on, I can hear them but can’t seam to tell the direction they are coming from.

    I have been playing the guitar some and have notice that the sound is getting better or I am adjusting to it better. The hard wood floors do make for a better acoustic I try that tonight.

    Kevin strength should start to get a little better as his body gets rid of the radiation and chemo affects. My problem is that I am a workaholic, and did not stop, the chemo world knock me down for a wile and I was slow getting back up, but once up I was going again. I realize now that it may have been one of my problems why I relapsed so fast, I did not give my body time to heal.

    Take care and keep strong, I have told my wife many of times, I could not have made it with out her by my side. She is my strength when I was week, and when I could not stand by myself it was her that held me up. The sad thing is for us men we don’t realize how blessed we are.

    God bless you and Kevin in your New Home
  • GRAVEY
    GRAVEY Member Posts: 83
    #8
    Hondo said:

    Karen
    Glad to see you are back I was getting worried there for a while. I am still adjusting to the new ears, something are just too loud and other are too soft. I think the worse thing is I can head things my brain forgot and sometime can’t understand what it is I am hearing. My wife has picked-up on this when she sees how puzzled I get and she tell me what it is that I am hearing, things like rain, water poring, the A/C coming on, I can hear them but can’t seam to tell the direction they are coming from.

    I have been playing the guitar some and have notice that the sound is getting better or I am adjusting to it better. The hard wood floors do make for a better acoustic I try that tonight.

    Kevin strength should start to get a little better as his body gets rid of the radiation and chemo affects. My problem is that I am a workaholic, and did not stop, the chemo world knock me down for a wile and I was slow getting back up, but once up I was going again. I realize now that it may have been one of my problems why I relapsed so fast, I did not give my body time to heal.

    Take care and keep strong, I have told my wife many of times, I could not have made it with out her by my side. She is my strength when I was week, and when I could not stand by myself it was her that held me up. The sad thing is for us men we don’t realize how blessed we are.

    God bless you and Kevin in your New Home

    Have loss also
    I was diagnosed with a T1 lesion at the base of my tongue, Squamous Cell Carcinoma, and the docs chose to have me do 3 Chemo Cisplatin treatments with 35 Radiation treatments to accompany the Chemo. The second day after my first Chemo treatment, I woke up with noticeably different hearing. I too experience muffled sound and high pitched ringing. I was just curious if this could go away over time, or am I more likely to have it be permanent? My docs did not explain to me that this could be a side affect, so of course when it happened I was quite angry. I truly cherish my hearing, mainly because I have a 4 year old daughter whom I dont want to miss a word of what she is saying, and find my self having to look her in the face to read her lips to understand what she is saying. I have a hard time with S's and F's, they sound the same. Any knowledge is greatly appreciated as I am 36 and this is all very frightening to me.

    Gravey
  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    GRAVEY said:

    Have loss also
    I was diagnosed with a T1 lesion at the base of my tongue, Squamous Cell Carcinoma, and the docs chose to have me do 3 Chemo Cisplatin treatments with 35 Radiation treatments to accompany the Chemo. The second day after my first Chemo treatment, I woke up with noticeably different hearing. I too experience muffled sound and high pitched ringing. I was just curious if this could go away over time, or am I more likely to have it be permanent? My docs did not explain to me that this could be a side affect, so of course when it happened I was quite angry. I truly cherish my hearing, mainly because I have a 4 year old daughter whom I dont want to miss a word of what she is saying, and find my self having to look her in the face to read her lips to understand what she is saying. I have a hard time with S's and F's, they sound the same. Any knowledge is greatly appreciated as I am 36 and this is all very frightening to me.

    Gravey

    Hi Gravey

    Welcome to CSN we are glad to have you here. Hearing lost due to the side affects of Radiation or Chemo most of the time will not get better but with age get worse. However there have been some who have gotten back a lot of there hearing once treatment has stopped, the body is incredible in the way it heals it self.

    I have two Grandchildren both 2 years old and want nothing more then to hear there little funny words as they start learning how to speak. Hearing aids can’t compare to the natural hearing, but it is a miracle to someone who can’t hear. I can again hear my Grandchildren and it is wonderful.

    I know you may be up-set because the doctor did not tell you all about the side affects of chemo, but we all look at it as the New Normal. I am just glad to still be here and be part of my Childers Childers.

    Take care and let us know how you are doing my friend.
  • GRAVEY
    GRAVEY Member Posts: 83
    #10
    Hondo said:

    Hi Gravey

    Welcome to CSN we are glad to have you here. Hearing lost due to the side affects of Radiation or Chemo most of the time will not get better but with age get worse. However there have been some who have gotten back a lot of there hearing once treatment has stopped, the body is incredible in the way it heals it self.

    I have two Grandchildren both 2 years old and want nothing more then to hear there little funny words as they start learning how to speak. Hearing aids can’t compare to the natural hearing, but it is a miracle to someone who can’t hear. I can again hear my Grandchildren and it is wonderful.

    I know you may be up-set because the doctor did not tell you all about the side affects of chemo, but we all look at it as the New Normal. I am just glad to still be here and be part of my Childers Childers.

    Take care and let us know how you are doing my friend.

    Hi Hondo,
    Thank you for
    Hi Hondo,

    Thank you for the warm welcome. I just started a thread on me and what I have gone through. I must say that I feel that God has been watching over me as my story doesn't even begin to compare to some of the pain and suffering that some have had to deal with here on this board that I have read. I guess I have been having such a rough time because I am only 36, and never in a million years expected to have such a health issue so young, when before this I never had a clue I was even sick. I only noticed something was wrong when I had a lump in my neck not go away after a couple of months. I thought it was just another swollen lymph node from being sick with a sinus infection, I have had one before, so just assumed. I wont tell my whole story again on here, but will just say thanks again for the welcome, and I hope that people can find comfort, knowledge, or what ever from what Ive posted that will make their experience an easier one to deal with. I tell my friends and family EVERY day now please dont take your health for granted and use me as their example, I can honestly say I am blessed with a truly incredible support system of family friends and prayer. The support I have received through my experience thus far has been overwhelming and so greatly appreciated.
    I had my last radiation treatment on Dec. 17th, and am supposed to return to work on Feb 1st, Im scared because in some instances I can say that I feel good enough to go back so soon, but in others, like the nausea I still feel, and the weakness I feel because of being down for so long, I worry I wont be able to do it. I have a doc visit on the 21st, and I am basically going to leave it up to him to tell me whether I should even be thinking to go back to work or not, considering that it will have been pretty much exactly 6 weeks after my last treatment, and really dont know what I should expect. Does the average person go back so soon, are their more effects that I will not have 2 experienced yet that would keep me from being able to go back so soon? I just dont know, and dont want to return too soon that would hinder my recovery.
    I have a very understanding employer, I currently am on short term disability, and could technically be out for another 3 months, which I dont really think I need that long, but maybe a couple more weeks beyond Feb 1st might do wonders, I just dont know.
    Anyways, if you have time, take a look at my story, I just listed it in the Head and Neck forum, and any info would be greatly appreciated.

    Gravey
  • Scambuster
    Scambuster Member Posts: 973
    #11
    GRAVEY said:

    Hi Hondo,
    Thank you for
    Hi Hondo,

    Thank you for the warm welcome. I just started a thread on me and what I have gone through. I must say that I feel that God has been watching over me as my story doesn't even begin to compare to some of the pain and suffering that some have had to deal with here on this board that I have read. I guess I have been having such a rough time because I am only 36, and never in a million years expected to have such a health issue so young, when before this I never had a clue I was even sick. I only noticed something was wrong when I had a lump in my neck not go away after a couple of months. I thought it was just another swollen lymph node from being sick with a sinus infection, I have had one before, so just assumed. I wont tell my whole story again on here, but will just say thanks again for the welcome, and I hope that people can find comfort, knowledge, or what ever from what Ive posted that will make their experience an easier one to deal with. I tell my friends and family EVERY day now please dont take your health for granted and use me as their example, I can honestly say I am blessed with a truly incredible support system of family friends and prayer. The support I have received through my experience thus far has been overwhelming and so greatly appreciated.
    I had my last radiation treatment on Dec. 17th, and am supposed to return to work on Feb 1st, Im scared because in some instances I can say that I feel good enough to go back so soon, but in others, like the nausea I still feel, and the weakness I feel because of being down for so long, I worry I wont be able to do it. I have a doc visit on the 21st, and I am basically going to leave it up to him to tell me whether I should even be thinking to go back to work or not, considering that it will have been pretty much exactly 6 weeks after my last treatment, and really dont know what I should expect. Does the average person go back so soon, are their more effects that I will not have 2 experienced yet that would keep me from being able to go back so soon? I just dont know, and dont want to return too soon that would hinder my recovery.
    I have a very understanding employer, I currently am on short term disability, and could technically be out for another 3 months, which I dont really think I need that long, but maybe a couple more weeks beyond Feb 1st might do wonders, I just dont know.
    Anyways, if you have time, take a look at my story, I just listed it in the Head and Neck forum, and any info would be greatly appreciated.

    Gravey

    BACK TO WORK
    HI Again Gravey,

    Your return to work will depend on how you feel. I would suggest trying part time if you feel up to it. Returning to full time too early can compromise your recovery which you don't need (don't know what you do ???) .

    If you have more disability time, then use it wisely. You may feel OK some days and then crash n burn for a few days during recovery, so best to start slow and not over do it even if you feel 100%.

    Cheers
    Scambuster
  • Hondo
    Hondo Member Posts: 6,636 Member
    #12
    GRAVEY said:

    Hi Hondo,
    Thank you for
    Hi Hondo,

    Thank you for the warm welcome. I just started a thread on me and what I have gone through. I must say that I feel that God has been watching over me as my story doesn't even begin to compare to some of the pain and suffering that some have had to deal with here on this board that I have read. I guess I have been having such a rough time because I am only 36, and never in a million years expected to have such a health issue so young, when before this I never had a clue I was even sick. I only noticed something was wrong when I had a lump in my neck not go away after a couple of months. I thought it was just another swollen lymph node from being sick with a sinus infection, I have had one before, so just assumed. I wont tell my whole story again on here, but will just say thanks again for the welcome, and I hope that people can find comfort, knowledge, or what ever from what Ive posted that will make their experience an easier one to deal with. I tell my friends and family EVERY day now please dont take your health for granted and use me as their example, I can honestly say I am blessed with a truly incredible support system of family friends and prayer. The support I have received through my experience thus far has been overwhelming and so greatly appreciated.
    I had my last radiation treatment on Dec. 17th, and am supposed to return to work on Feb 1st, Im scared because in some instances I can say that I feel good enough to go back so soon, but in others, like the nausea I still feel, and the weakness I feel because of being down for so long, I worry I wont be able to do it. I have a doc visit on the 21st, and I am basically going to leave it up to him to tell me whether I should even be thinking to go back to work or not, considering that it will have been pretty much exactly 6 weeks after my last treatment, and really dont know what I should expect. Does the average person go back so soon, are their more effects that I will not have 2 experienced yet that would keep me from being able to go back so soon? I just dont know, and dont want to return too soon that would hinder my recovery.
    I have a very understanding employer, I currently am on short term disability, and could technically be out for another 3 months, which I dont really think I need that long, but maybe a couple more weeks beyond Feb 1st might do wonders, I just dont know.
    Anyways, if you have time, take a look at my story, I just listed it in the Head and Neck forum, and any info would be greatly appreciated.

    Gravey

    Hi again Gravey
    What you don’t want to do is to over do it and sometimes going back to work too soon can do just that, on the other hand you need to get your body working again. I was very blessed where I worked; both times I went through treatment I was allowed to work when I wanted to or stay home no questions asked and at full pay. Sometimes I would go into work put my pillow on my desk and sleep, what it did was to help me take my mind off my problems and make me fell like I was doing something.

    I do believe in the Power of prayer and that God watches over his children when they get sick. I too was very surprised when I found out that I had Cancer. I was a vegetarian for almost 15 years and was in the best of health, I was 6’ 1” and 230lbs strong as an ox, that was 8 years ago now. But in all of this I never lost my Faith, because I knew that God has a reason for everything. That is one of the reason I stay here on CSN and welcome everyone I can, and pray for them too.

    Also I am one of the Elders of the Church where I go and still love preaching at the end of every other week

    Take care and God bless you my friend

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