Anybody else out there suffering from hearing loss from Tobramyacin

P

proverbs3

New member
We were just told the other day that Faith lost her high frequency hearing. Basically 1500 hz and above. Well that doesn't mean much to me. We just keep observing what she can't hear. So far we've notice the m/w and stove beeper, screaming on the TV, sometimes the phone, and last night the upper keys on the piano all sound the same. Of course, they want her to consider hearing aids.

I'm so frustrated right now because it was the IV Tobramyacin that was the culprit. (She has been on inhaled TOBI, but is now on Colistin and that is also a culprit!) Not to mention the fact that it also gave her kidey's level a huge jump that put her in the hospital for a week. I just feel like her body is slowly deteriorating and I'm about to lose it.

Then I found out that the hearing aids are not covered my insurance! Oh yea!!

Anybody else have this because of the drug?

Carol
 
P

proverbs3

New member
We were just told the other day that Faith lost her high frequency hearing. Basically 1500 hz and above. Well that doesn't mean much to me. We just keep observing what she can't hear. So far we've notice the m/w and stove beeper, screaming on the TV, sometimes the phone, and last night the upper keys on the piano all sound the same. Of course, they want her to consider hearing aids.

I'm so frustrated right now because it was the IV Tobramyacin that was the culprit. (She has been on inhaled TOBI, but is now on Colistin and that is also a culprit!) Not to mention the fact that it also gave her kidey's level a huge jump that put her in the hospital for a week. I just feel like her body is slowly deteriorating and I'm about to lose it.

Then I found out that the hearing aids are not covered my insurance! Oh yea!!

Anybody else have this because of the drug?

Carol
 
P

proverbs3

New member
We were just told the other day that Faith lost her high frequency hearing. Basically 1500 hz and above. Well that doesn't mean much to me. We just keep observing what she can't hear. So far we've notice the m/w and stove beeper, screaming on the TV, sometimes the phone, and last night the upper keys on the piano all sound the same. Of course, they want her to consider hearing aids.

I'm so frustrated right now because it was the IV Tobramyacin that was the culprit. (She has been on inhaled TOBI, but is now on Colistin and that is also a culprit!) Not to mention the fact that it also gave her kidey's level a huge jump that put her in the hospital for a week. I just feel like her body is slowly deteriorating and I'm about to lose it.

Then I found out that the hearing aids are not covered my insurance! Oh yea!!

Anybody else have this because of the drug?

Carol
 
R

rotandroll

New member
I am so sorry to hear about everything you guys are going through right now. Unfortunately, despite all of the bad outcomes of too much Tobra, it seems like a lot of doctors use it less sparingly than they should. I have permanent kidney disease because of too much, as well as hearing damage.

I would suggest that you not allow your daughter to have IV Tobra again. I'm sure the doctors have realized this now... but who gave her so much it messed up her hearing and kidneys? I immediately stopped seeing the doctor who insisted I'd be fine doing as much/as fast as I was when I sustained permanent damage to my hearing and kidneys.

Hang in there, fight your insurance for hearing aids. I would ask the social worker at your center for financial help if needed. There are people who can and will help you.

...and I know it's hard, mom, but it's worth all the exhaustion.
 
R

rotandroll

New member
I am so sorry to hear about everything you guys are going through right now. Unfortunately, despite all of the bad outcomes of too much Tobra, it seems like a lot of doctors use it less sparingly than they should. I have permanent kidney disease because of too much, as well as hearing damage.

I would suggest that you not allow your daughter to have IV Tobra again. I'm sure the doctors have realized this now... but who gave her so much it messed up her hearing and kidneys? I immediately stopped seeing the doctor who insisted I'd be fine doing as much/as fast as I was when I sustained permanent damage to my hearing and kidneys.

Hang in there, fight your insurance for hearing aids. I would ask the social worker at your center for financial help if needed. There are people who can and will help you.

...and I know it's hard, mom, but it's worth all the exhaustion.
 
R

rotandroll

New member
I am so sorry to hear about everything you guys are going through right now. Unfortunately, despite all of the bad outcomes of too much Tobra, it seems like a lot of doctors use it less sparingly than they should. I have permanent kidney disease because of too much, as well as hearing damage.

I would suggest that you not allow your daughter to have IV Tobra again. I'm sure the doctors have realized this now... but who gave her so much it messed up her hearing and kidneys? I immediately stopped seeing the doctor who insisted I'd be fine doing as much/as fast as I was when I sustained permanent damage to my hearing and kidneys.

Hang in there, fight your insurance for hearing aids. I would ask the social worker at your center for financial help if needed. There are people who can and will help you.

...and I know it's hard, mom, but it's worth all the exhaustion.
 
I

IG

Guest
That's odd, Colistin isn't usually associated with hearing loss, that I know of.
But yes Tobi can cause both problems, as can aminoglycosides (amikacin, gentamicin, etc)
They should be doing levels on her if they're not, demand them.

I started loosing my hearing around 15, but because Tobi and the whole group of aminoglycosides (can be very toxic to the ears) were the only drugs I was sensitive to I had to stay on them for another two years. Thankfully my hearing didn't take a hit at that point, it was only after transplant and being off those meds did I have another loss in hearing, we figured it was delayed. I'd rather be deaf than dead, but I was in a tight situation especially with having MRSA. *shrug.
 
I

IG

Guest
That's odd, Colistin isn't usually associated with hearing loss, that I know of.
But yes Tobi can cause both problems, as can aminoglycosides (amikacin, gentamicin, etc)
They should be doing levels on her if they're not, demand them.

I started loosing my hearing around 15, but because Tobi and the whole group of aminoglycosides (can be very toxic to the ears) were the only drugs I was sensitive to I had to stay on them for another two years. Thankfully my hearing didn't take a hit at that point, it was only after transplant and being off those meds did I have another loss in hearing, we figured it was delayed. I'd rather be deaf than dead, but I was in a tight situation especially with having MRSA. *shrug.
 
I

IG

Guest
That's odd, Colistin isn't usually associated with hearing loss, that I know of.
But yes Tobi can cause both problems, as can aminoglycosides (amikacin, gentamicin, etc)
They should be doing levels on her if they're not, demand them.

I started loosing my hearing around 15, but because Tobi and the whole group of aminoglycosides (can be very toxic to the ears) were the only drugs I was sensitive to I had to stay on them for another two years. Thankfully my hearing didn't take a hit at that point, it was only after transplant and being off those meds did I have another loss in hearing, we figured it was delayed. I'd rather be deaf than dead, but I was in a tight situation especially with having MRSA. *shrug.
 
J

JennifersHope

New member
Tobra has caused me to lose some hearing as well.. I don't think I will allow the doctors to put me back on it... For some reason I had such problems with it ..

One of the times I was on it, my peak level was so high that my kidneys started to not work right...

They are going to be hard pressed to get me to agree to do Tobra again.. I do use Tobi though all the time and I haven't noticed any hearing loss further.
 
J

JennifersHope

New member
Tobra has caused me to lose some hearing as well.. I don't think I will allow the doctors to put me back on it... For some reason I had such problems with it ..

One of the times I was on it, my peak level was so high that my kidneys started to not work right...

They are going to be hard pressed to get me to agree to do Tobra again.. I do use Tobi though all the time and I haven't noticed any hearing loss further.
 
J

JennifersHope

New member
Tobra has caused me to lose some hearing as well.. I don't think I will allow the doctors to put me back on it... For some reason I had such problems with it ..

One of the times I was on it, my peak level was so high that my kidneys started to not work right...

They are going to be hard pressed to get me to agree to do Tobra again.. I do use Tobi though all the time and I haven't noticed any hearing loss further.
 
K

Kelli

New member
I'm 29 and have been on tobra forever, as it is one of the few drugs that I'm not allergic to. But I have had no hearing loss what so ever. Luck I guess.

I have to tell you something bad though..........
I asked my husband to get the digital thermometer b/c I didn't feel good and thought I had a fever. So I was playfully poking him in the neck and he got mad, so I did one more poke, and it went STRAIGHT INTO HIS EAR AND POPPED HIS EAR DRUM. No lasting major damage, I just wanted to add what an idiot I am.
<img src="i/expressions/face-icon-small-smile.gif" border="0">

Good luck to your daughter. Can they take a sputum culture and see what her sensitivites are and maybe switch things up a bit? Might be worth a try.

Sorry to hear of your bad news.
KELLI
29 f CF
 
K

Kelli

New member
I'm 29 and have been on tobra forever, as it is one of the few drugs that I'm not allergic to. But I have had no hearing loss what so ever. Luck I guess.

I have to tell you something bad though..........
I asked my husband to get the digital thermometer b/c I didn't feel good and thought I had a fever. So I was playfully poking him in the neck and he got mad, so I did one more poke, and it went STRAIGHT INTO HIS EAR AND POPPED HIS EAR DRUM. No lasting major damage, I just wanted to add what an idiot I am.
<img src="i/expressions/face-icon-small-smile.gif" border="0">

Good luck to your daughter. Can they take a sputum culture and see what her sensitivites are and maybe switch things up a bit? Might be worth a try.

Sorry to hear of your bad news.
KELLI
29 f CF
 
K

Kelli

New member
I'm 29 and have been on tobra forever, as it is one of the few drugs that I'm not allergic to. But I have had no hearing loss what so ever. Luck I guess.

I have to tell you something bad though..........
I asked my husband to get the digital thermometer b/c I didn't feel good and thought I had a fever. So I was playfully poking him in the neck and he got mad, so I did one more poke, and it went STRAIGHT INTO HIS EAR AND POPPED HIS EAR DRUM. No lasting major damage, I just wanted to add what an idiot I am.
<img src="i/expressions/face-icon-small-smile.gif" border="0">

Good luck to your daughter. Can they take a sputum culture and see what her sensitivites are and maybe switch things up a bit? Might be worth a try.

Sorry to hear of your bad news.
KELLI
29 f CF
 
A

Allie

New member
Ry lost some hearing in his left ear to Tobra. After that, he refused to let them put him on it, he didn't want to lose his hearing.
 
A

Allie

New member
Ry lost some hearing in his left ear to Tobra. After that, he refused to let them put him on it, he didn't want to lose his hearing.
 
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