Hearing Loss

S

serendipity730

New member
Hi All,

I wanted to share with, or caution everyone, to pay close attn to their hearing if they are frequently on Tobra (poss. even Tobi, thought the risk is said to be less). I had always known that there was a risk for ototoxicity in Tobra, but my trough's have always been good. I never had any major ringing in my ears or other symptoms. As a teenager, I think I had some hearing testing that may have showed mild high frequency hearing loss.

Anyway, I have been on Tobra A LOT in the last two years due to more frequent & difficult to treat exacerbations (prob. 14 wks over the last 2 yrs). Over the last six mos., I noticed that I couldn't hear as well out of my right ear. When it got to the point where I couldn't hold the phone up to my right ear and follow a conversation, I decided to get my hearing tested. A hearing screen showed that I had hearing loss in my right ear (severe) and that my left looked okay. Today, I went to an ENT for full testing, which showed mild - moderate hearing loss in my left and severe to profound in my right. So, now, on top of everything else I have going on, I will have hearing aid(s).

Okay, so this became somewhat of a rant, but I think that CFers should be more aware of this. I don't know how common it is or even if anything could have been done to prevent it (other than ditch Tobra, which really isn't an option for me). I really think that Adult CF clinics should recommend periodic hearing screens for their patients who are on frequent courses of IV amnioglycosides.

Thoughts? Anyone with a similar experience?

In any case, thanks for reading <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

serendipity730

New member
Hi All,

I wanted to share with, or caution everyone, to pay close attn to their hearing if they are frequently on Tobra (poss. even Tobi, thought the risk is said to be less). I had always known that there was a risk for ototoxicity in Tobra, but my trough's have always been good. I never had any major ringing in my ears or other symptoms. As a teenager, I think I had some hearing testing that may have showed mild high frequency hearing loss.

Anyway, I have been on Tobra A LOT in the last two years due to more frequent & difficult to treat exacerbations (prob. 14 wks over the last 2 yrs). Over the last six mos., I noticed that I couldn't hear as well out of my right ear. When it got to the point where I couldn't hold the phone up to my right ear and follow a conversation, I decided to get my hearing tested. A hearing screen showed that I had hearing loss in my right ear (severe) and that my left looked okay. Today, I went to an ENT for full testing, which showed mild - moderate hearing loss in my left and severe to profound in my right. So, now, on top of everything else I have going on, I will have hearing aid(s).

Okay, so this became somewhat of a rant, but I think that CFers should be more aware of this. I don't know how common it is or even if anything could have been done to prevent it (other than ditch Tobra, which really isn't an option for me). I really think that Adult CF clinics should recommend periodic hearing screens for their patients who are on frequent courses of IV amnioglycosides.

Thoughts? Anyone with a similar experience?

In any case, thanks for reading <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

serendipity730

New member
Hi All,
<br />
<br />I wanted to share with, or caution everyone, to pay close attn to their hearing if they are frequently on Tobra (poss. even Tobi, thought the risk is said to be less). I had always known that there was a risk for ototoxicity in Tobra, but my trough's have always been good. I never had any major ringing in my ears or other symptoms. As a teenager, I think I had some hearing testing that may have showed mild high frequency hearing loss.
<br />
<br />Anyway, I have been on Tobra A LOT in the last two years due to more frequent & difficult to treat exacerbations (prob. 14 wks over the last 2 yrs). Over the last six mos., I noticed that I couldn't hear as well out of my right ear. When it got to the point where I couldn't hold the phone up to my right ear and follow a conversation, I decided to get my hearing tested. A hearing screen showed that I had hearing loss in my right ear (severe) and that my left looked okay. Today, I went to an ENT for full testing, which showed mild - moderate hearing loss in my left and severe to profound in my right. So, now, on top of everything else I have going on, I will have hearing aid(s).
<br />
<br />Okay, so this became somewhat of a rant, but I think that CFers should be more aware of this. I don't know how common it is or even if anything could have been done to prevent it (other than ditch Tobra, which really isn't an option for me). I really think that Adult CF clinics should recommend periodic hearing screens for their patients who are on frequent courses of IV amnioglycosides.
<br />
<br />Thoughts? Anyone with a similar experience?
<br />
<br />In any case, thanks for reading <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

missT

Member
This is a great post. I too have hearing loss in my right ear. I am a 40 year old CFer and have been on Tobra Iv's many times. I can still hear out of both but I do believe it is a side effect of the drug. I try not to take iv's---if I can hold out. I also agree that CF docs should screen for hearing loss. Parents hopefully will read this post.
 
M

missT

Member
This is a great post. I too have hearing loss in my right ear. I am a 40 year old CFer and have been on Tobra Iv's many times. I can still hear out of both but I do believe it is a side effect of the drug. I try not to take iv's---if I can hold out. I also agree that CF docs should screen for hearing loss. Parents hopefully will read this post.
 
M

missT

Member
This is a great post. I too have hearing loss in my right ear. I am a 40 year old CFer and have been on Tobra Iv's many times. I can still hear out of both but I do believe it is a side effect of the drug. I try not to take iv's---if I can hold out. I also agree that CF docs should screen for hearing loss. Parents hopefully will read this post.
 
M

mag6125

New member
I have mild hearing loss in my left ear from Tobra/Tobi. I don't know where you live but our clinic requires hearing screening every year for our annual appointment for anyone on more than two courses of IV Tobra in a 12 month period(or something like that). Maybe its something you guys can suggest to your clinic?
 
M

mag6125

New member
I have mild hearing loss in my left ear from Tobra/Tobi. I don't know where you live but our clinic requires hearing screening every year for our annual appointment for anyone on more than two courses of IV Tobra in a 12 month period(or something like that). Maybe its something you guys can suggest to your clinic?
 
M

mag6125

New member
I have mild hearing loss in my left ear from Tobra/Tobi. I don't know where you live but our clinic requires hearing screening every year for our annual appointment for anyone on more than two courses of IV Tobra in a 12 month period(or something like that). Maybe its something you guys can suggest to your clinic?
 
S

serendipity730

New member
Mag,

I am definitely going to suggest it! Like I said, I don't know if I would have done anything different. Now, I don't really have many IV antibiotic options, but five years ago, I did. Maybe I would have made different choices. I am considering writing a letter to the CFF as well.
 
S

serendipity730

New member
Mag,

I am definitely going to suggest it! Like I said, I don't know if I would have done anything different. Now, I don't really have many IV antibiotic options, but five years ago, I did. Maybe I would have made different choices. I am considering writing a letter to the CFF as well.
 
S

serendipity730

New member
Mag,
<br />
<br />I am definitely going to suggest it! Like I said, I don't know if I would have done anything different. Now, I don't really have many IV antibiotic options, but five years ago, I did. Maybe I would have made different choices. I am considering writing a letter to the CFF as well.
 
T

tarheel

Guest
After saying "what?" and "I can't hear you!" so much I could scream we got my hearing tested. I'm always on TOBI and frequently tobra, so it should have been little suprise that both my ears have some hearing loss, but they're still considered on the low side of "normal". BTW the beep test I did better with than the test where she said words and I had to repeat them. The "word" test was a better indicator for me that something was going on with my hearing.
 
T

tarheel

Guest
After saying "what?" and "I can't hear you!" so much I could scream we got my hearing tested. I'm always on TOBI and frequently tobra, so it should have been little suprise that both my ears have some hearing loss, but they're still considered on the low side of "normal". BTW the beep test I did better with than the test where she said words and I had to repeat them. The "word" test was a better indicator for me that something was going on with my hearing.
 
T

tarheel

Guest
After saying "what?" and "I can't hear you!" so much I could scream we got my hearing tested. I'm always on TOBI and frequently tobra, so it should have been little suprise that both my ears have some hearing loss, but they're still considered on the low side of "normal". BTW the beep test I did better with than the test where she said words and I had to repeat them. The "word" test was a better indicator for me that something was going on with my hearing.
 
B

benthyrdeeders

Guest
I recently decided to stop taking Tobra/Tobi altogether because of my tinitus. It had gotten much worse over the last year and I'm sure it's from the Tobi.
Last week I spent some time in the hospital and was given only Ceftazidime. Much to my surprise I got a good bump on my FEV1..so Tobra wasn't needed after all.
I think as a patient you need to be aware of all the residual effects of your meds and constantly be looking at all your options.
 
B

benthyrdeeders

Guest
I recently decided to stop taking Tobra/Tobi altogether because of my tinitus. It had gotten much worse over the last year and I'm sure it's from the Tobi.
Last week I spent some time in the hospital and was given only Ceftazidime. Much to my surprise I got a good bump on my FEV1..so Tobra wasn't needed after all.
I think as a patient you need to be aware of all the residual effects of your meds and constantly be looking at all your options.
 
B

benthyrdeeders

Guest
I recently decided to stop taking Tobra/Tobi altogether because of my tinitus. It had gotten much worse over the last year and I'm sure it's from the Tobi.
<br />Last week I spent some time in the hospital and was given only Ceftazidime. Much to my surprise I got a good bump on my FEV1..so Tobra wasn't needed after all.
<br />I think as a patient you need to be aware of all the residual effects of your meds and constantly be looking at all your options.
 
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