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Sudden Hearing Loss: What are options if steroids don't work?

Posted by m53 @m53, Sep 1, 2019

A family member experienced sudden hearing loss and was treated for wax build- up. On return to Dr., there was no improvement and a referral was made to ENT. Steriod treatment has not resulted in an improvement in hearing, and family member has been told it is unlikely hearing in that ear will be regained. It is now about 8 weeks since loss. Any recommendations as to specialists/treatment to pursue in the San Francisco area?

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tonyinmi | @tonyinmi | Mar 15 4:34am
In reply to @sshlpt "I lost all hearing in my left ear 13 days ago. Within the first 3 days,..." + (show)
@sshlpt

I lost all hearing in my left ear 13 days ago. Within the first 3 days, I had gone to urgent care and was informed that I had fluid in my ears and to take allergy medications. And, after a week, I followed up with my PCP, who did not see any fluid retention and referred me to an ENT and Audiologist. The audiologist shared that I have profound hearing loss in my left ear and was skeptical that I would be able to regain hearing. Currently, I'm on a regimen of Prednisone and am 3 days into taking it. But, I'm disheartened by all of the comments that highlight its limited impact on my SSHL diagnosis. I meet with my ENT again in a week to have additional tests and steroid injections. I will also have an MRI done. I am very concerned because I am starting to get tinnitus in my right ear although the audiologist mentioned I tested fine. I am researching as much as I can on my next steps. Apparently, one should have a cochlear implant within the first 6 months of SSHL diagnosis ---because our brains will start to otherwise find other neural patterns for sound recognition. I can't tell if my hearing loss was brought on by stress or Covid, which I experienced 4 months ago....I don't think I'll ever know. Reaching out to this community on any personal guidance or recommendations.

Jump to this post

@sshlpt In my opinion, your audiologist is right. Sudden hearing loss can be corrected but there is a small window, about 5 days from onset, when steroids help. The positive news is that a cochlear implant may get your hearing back. I don't know if hearing will return on its own once we have sudden hearing loss. I had loss of taste and smell at one time (well before covid) but those functions slowly returned after about a year. I did not have an injury. An MRI revealed no abnormalities.
Your tinnitus is interesting since it's in the opposite ear. There is no cure for tinnitus but some folks find that a hearing aid or cochlear implant causes the symptoms to disappear. Not sure in your case since the amplification will be on the opposite ear.
I hope you find relief and would be interested in hearing a follow up.
Tony in Michigan

REPLY
1 reply
charlaine | @charlaine | Mar 15 9:28am
In reply to @sshlpt "I lost all hearing in my left ear 13 days ago. Within the first 3 days,..." + (show)
@sshlpt

I lost all hearing in my left ear 13 days ago. Within the first 3 days, I had gone to urgent care and was informed that I had fluid in my ears and to take allergy medications. And, after a week, I followed up with my PCP, who did not see any fluid retention and referred me to an ENT and Audiologist. The audiologist shared that I have profound hearing loss in my left ear and was skeptical that I would be able to regain hearing. Currently, I'm on a regimen of Prednisone and am 3 days into taking it. But, I'm disheartened by all of the comments that highlight its limited impact on my SSHL diagnosis. I meet with my ENT again in a week to have additional tests and steroid injections. I will also have an MRI done. I am very concerned because I am starting to get tinnitus in my right ear although the audiologist mentioned I tested fine. I am researching as much as I can on my next steps. Apparently, one should have a cochlear implant within the first 6 months of SSHL diagnosis ---because our brains will start to otherwise find other neural patterns for sound recognition. I can't tell if my hearing loss was brought on by stress or Covid, which I experienced 4 months ago....I don't think I'll ever know. Reaching out to this community on any personal guidance or recommendations.

Jump to this post

Be cautious about too much prednisone. I am now having a total hip replacement due to vascular necrosis. When I inquired about cause my orthopedic surgeon said only known case is prednisone! I had multiple infusions and took high prednisone doses to try to save my hearing - I had Ménière’s disease in both ears. I now have severe hearing loss and a vascular necrosis in both hips!

REPLY
1 reply
Mentor
Julie, Volunteer Mentor | @julieo4 | Mar 15 11:58am
In reply to @sshlpt "I lost all hearing in my left ear 13 days ago. Within the first 3 days,..." + (show)
@sshlpt

I lost all hearing in my left ear 13 days ago. Within the first 3 days, I had gone to urgent care and was informed that I had fluid in my ears and to take allergy medications. And, after a week, I followed up with my PCP, who did not see any fluid retention and referred me to an ENT and Audiologist. The audiologist shared that I have profound hearing loss in my left ear and was skeptical that I would be able to regain hearing. Currently, I'm on a regimen of Prednisone and am 3 days into taking it. But, I'm disheartened by all of the comments that highlight its limited impact on my SSHL diagnosis. I meet with my ENT again in a week to have additional tests and steroid injections. I will also have an MRI done. I am very concerned because I am starting to get tinnitus in my right ear although the audiologist mentioned I tested fine. I am researching as much as I can on my next steps. Apparently, one should have a cochlear implant within the first 6 months of SSHL diagnosis ---because our brains will start to otherwise find other neural patterns for sound recognition. I can't tell if my hearing loss was brought on by stress or Covid, which I experienced 4 months ago....I don't think I'll ever know. Reaching out to this community on any personal guidance or recommendations.

Jump to this post

I'm sorry to hear about your experience. Adult onset hearing loss is challenging because it comes at us as a major life loss. It is surprising how common SSHL is. From all conversations and information I have, if it is not treated with steroids within a few days of onset, the odds are slim that hearing will come back. Then again, in rare cases it does come back. Still, hearing loss occurs for different reasons, and it seems that everyone is affected differently. Consequently, hearing loss remains a mystery for so many, including those researchers who are working hard to find cures for hearing loss and tinnitus.

I encourage you to think positive. Technology has improved greatly in recent years. Hearing aids are worth trying. There are bicross hearing aids that will pick up sound on a 'deaf side' and transmit it to the 'good side'. If they do not help, a cochlear implant may be your best solution. CIs have been miracles for thousands of people with all types of hearing loss, including SSHL. The criteria for consideration of a CI now includes those with single sided deafness. That was not the case only a few years ago.

It's extremely important for you to protect the hearing in your better ear. Avoid noisy settings unless you wear ear plugs that are well fit. When you have the MRI, insist on well fitted ear plugs being used during the MRI process because it creates extreme noise.

Tinnitus is related to hearing loss but often occurs without it. I hope you are able to screen it out. Many say it comes on with stress, caffeine, alcohol, environmental noise, some medications, etc. It may help to try eliminating some of those things to see if it changes.

I am sure my own hearing loss is a result of genetics and exposure to noise. However, it was progressive and gradual over many years. When diagnosed I was given zero hope for help of any kind, but that was in the 1960s! Today, as a cochlear implant recipient who also uses a high quality hearing aid and other technology when needed (BlueTooth, Telecoils, Hearing Loops, etc.), I remain comfortable in the hearing mainstream. NOTE: My cochlear implant was done years after my diagnosis. If you go the CI route, your brain will likely retain it's ability to understand speech and appreciate music. You will benefit from aural rehabilitation, much of which you will do yourself. (Listen to audio books, etc.) Take time to do the research. Ask questions. Learn from other CI recipients. There is a lot of information at http://www.hearingloss.org and also at http://www.acialliance.org

Don't give up hope. Learn all you can. Pleased that you have come to MCC.

REPLY
1 reply
pennyr | @pennyr | Mar 16 1:17pm
In reply to @tonyinmi "@sshlpt In my opinion, your audiologist is right. Sudden hearing loss can be corrected but there..." + (show)
@tonyinmi

@sshlpt In my opinion, your audiologist is right. Sudden hearing loss can be corrected but there is a small window, about 5 days from onset, when steroids help. The positive news is that a cochlear implant may get your hearing back. I don't know if hearing will return on its own once we have sudden hearing loss. I had loss of taste and smell at one time (well before covid) but those functions slowly returned after about a year. I did not have an injury. An MRI revealed no abnormalities.
Your tinnitus is interesting since it's in the opposite ear. There is no cure for tinnitus but some folks find that a hearing aid or cochlear implant causes the symptoms to disappear. Not sure in your case since the amplification will be on the opposite ear.
I hope you find relief and would be interested in hearing a follow up.
Tony in Michigan

Jump to this post

Tony, when you say tinnitus may disappear do you mean become less (or even unnoticeable) for the time that the hearing aid or cochlear implant are in use? I think it probably comes back as soon as you remove the aid or processor. For me keeping busy, even if it's quiet busy, say reading, is the best way for me to not notice my tinnitus. The CI helps, the hearing aid on the other side less so.

REPLY
1 reply
pennyr | @pennyr | Mar 16 1:22pm
In reply to @charlaine "Be cautious about too much prednisone. I am now having a total hip replacement due to..." + (show)
@charlaine

Be cautious about too much prednisone. I am now having a total hip replacement due to vascular necrosis. When I inquired about cause my orthopedic surgeon said only known case is prednisone! I had multiple infusions and took high prednisone doses to try to save my hearing - I had Ménière’s disease in both ears. I now have severe hearing loss and a vascular necrosis in both hips!

Jump to this post

When you say you HAD Ménière's disease it implies a cure. I have it and while the vertigo has been in remission for a number of years the other symptoms were not. How did your Meniere's play out? I ended up with a CI in one side, and at the moment, a hearing aid in the other.

REPLY
1 reply
charlaine | @charlaine | Mar 16 1:41pm
In reply to @pennyr "When you say you HAD Ménière's disease it implies a cure. I have it and while..." + (show)
@pennyr

When you say you HAD Ménière's disease it implies a cure. I have it and while the vertigo has been in remission for a number of years the other symptoms were not. How did your Meniere's play out? I ended up with a CI in one side, and at the moment, a hearing aid in the other.

Jump to this post

You are right! I just don’t have vertigo - ENT did 3rd window syndrome surgery so that helped stop vertigo attacks. But still tinnitus and hearing loss.
Does CI give you good hearing in that ear? Wondering if I should consider that…

REPLY
pennyr | @pennyr | Mar 16 1:51pm

My vertigo stopped spontaneously. I have had one attack in the last ten years or so which is wonderful but I always wonder if it will start again as it was by far the hardest thing to deal with. I had lost almost all the hearing in my left ear and am severely too profoundly deaf in the right although it still fluctuates a lot but always on a downward trend. The CI has been fantastic. Within four weeks of activation I was hearing with 85% accuracy. I go again this week for the three month mapping and am looking forward to finding out how things are doing after that mapping. I'm also getting a matching hearing aid for the other ear. The one I have now can't be controlled from the phone at the same time as only one of the two things can be paired. Lots of money but I think it will be worth it as I will get directionality and a more rounded sound. I would definitely consider it. I have a blog on FB which you can probably find by searching for From Hearing to Deafness and Back. It gives all the back story plus the whole history from diagnosis, through the whole mess of Covid which is when things went really bad for me, and then on to the CI that I had in December.

REPLY
tonyinmi | @tonyinmi | Mar 17 1:33am
In reply to @pennyr "Tony, when you say tinnitus may disappear do you mean become less (or even unnoticeable) for..." + (show)
@pennyr

Tony, when you say tinnitus may disappear do you mean become less (or even unnoticeable) for the time that the hearing aid or cochlear implant are in use? I think it probably comes back as soon as you remove the aid or processor. For me keeping busy, even if it's quiet busy, say reading, is the best way for me to not notice my tinnitus. The CI helps, the hearing aid on the other side less so.

Jump to this post

@pennyr Some people say that their tinnitus is not bothersome when they have their hearing aid or cochlear implant on. The tinnitus may or may not return when the device is off. My tinnitus is very random but I rarely hear it when I have my hearing aids on, especially if I'm listening to music. I agree that keeping the mind from wandering helps. It would be nice if there was a cure for both hearing loss and tinnitus. I'm optimistic that stem cell research will find a cure in my lifetime but realize that I will have to move up to a CI before I get too old.
Tony in Michigan

REPLY
pennyr | @pennyr | Mar 17 10:40am

At 73 I think CI is as good as it's going to get for me. I also haven't progressed to being able to listen to music yet! Tinnitus is a problem for me but I have acclimated pretty well, I think. I'm never without it but I do get to the point I can ignore it for quite long stretches. Good luck!

REPLY
sshlpt | @sshlpt | Mar 19 8:27am
In reply to @julieo4 "I'm sorry to hear about your experience. Adult onset hearing loss is challenging because it comes..." + (show)
@julieo4

I'm sorry to hear about your experience. Adult onset hearing loss is challenging because it comes at us as a major life loss. It is surprising how common SSHL is. From all conversations and information I have, if it is not treated with steroids within a few days of onset, the odds are slim that hearing will come back. Then again, in rare cases it does come back. Still, hearing loss occurs for different reasons, and it seems that everyone is affected differently. Consequently, hearing loss remains a mystery for so many, including those researchers who are working hard to find cures for hearing loss and tinnitus.

I encourage you to think positive. Technology has improved greatly in recent years. Hearing aids are worth trying. There are bicross hearing aids that will pick up sound on a 'deaf side' and transmit it to the 'good side'. If they do not help, a cochlear implant may be your best solution. CIs have been miracles for thousands of people with all types of hearing loss, including SSHL. The criteria for consideration of a CI now includes those with single sided deafness. That was not the case only a few years ago.

It's extremely important for you to protect the hearing in your better ear. Avoid noisy settings unless you wear ear plugs that are well fit. When you have the MRI, insist on well fitted ear plugs being used during the MRI process because it creates extreme noise.

Tinnitus is related to hearing loss but often occurs without it. I hope you are able to screen it out. Many say it comes on with stress, caffeine, alcohol, environmental noise, some medications, etc. It may help to try eliminating some of those things to see if it changes.

I am sure my own hearing loss is a result of genetics and exposure to noise. However, it was progressive and gradual over many years. When diagnosed I was given zero hope for help of any kind, but that was in the 1960s! Today, as a cochlear implant recipient who also uses a high quality hearing aid and other technology when needed (BlueTooth, Telecoils, Hearing Loops, etc.), I remain comfortable in the hearing mainstream. NOTE: My cochlear implant was done years after my diagnosis. If you go the CI route, your brain will likely retain it's ability to understand speech and appreciate music. You will benefit from aural rehabilitation, much of which you will do yourself. (Listen to audio books, etc.) Take time to do the research. Ask questions. Learn from other CI recipients. There is a lot of information at http://www.hearingloss.org and also at http://www.acialliance.org

Don't give up hope. Learn all you can. Pleased that you have come to MCC.

Jump to this post

Thank you for your response. It means so very much. I have been on prednisone for a week and my hearing has not returned in my left ear. It has been emotional especially given the tinnitus that I hear in both ears all day and all night. I have been barely sleeping. I have another week of prednisone and some injections that will be done in my ear, but based on all of the feedback, I don’t expect my hearing to return. I am waking up to a whole new reality of living with the loss and constant high pitched ringing. Your message has been a life line of hope. Thanks

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