New member. Please help

Hi,

I am new to this forum and also new to knowing that I have a hearing loss. I have a few questions regarding this, and I was hoping that I may get some answers here. I have been diagnosed with Otosclerosis. All my life I have known that I have had problems hearing. My hearing has got worse recently, though. I have never been taken seriously regarding this, because I am now only 21, and the doctors always just tell me to get my ears syringed, which I have done, and it’s never made any difference. So I decided to take it upon myself and book a private hearing test, which I did, and it turned out I do have a significant bilateral conductive hearing loss. So, I went to the doctors with my hearing test results, only to be asked if I was sure it wasn’t selective hearing!?!?!? :frowning: Luckily, I managed to convince him to book me in for another hearing test at the surgery. I went back for my test results yesterday (in my signature). There were some differences between my 2 tests, which I found a bit strange, considering they were only 2 weeks apart. The main difference being at 8K Hz, I went from a 40 dB loss on 9th Oct to 60dB on the 25th of Oct. Would this be Otosclerosis causing this sudden deterioration, or could it be something else? (I have no wax). Could it be a good indication of how rapidly my hearing will deteriorate? How quickly do you think my hearing is going to deteriorate? I live in the UK and I understand that some people get hearing aids on the NHS, am I likely to get NHS hearing aids?

Thanks in advance for any help
Becki

Hi Becki,

I’m 31 and was diagnosed with otosclerois last spring, so I know exactly what you’re going through. Like you, my doctor kept telling me my ear was clogged. I finally went to an ENT and got a real diagnosis. I think it’s hard for people to really believe that you can start losing your hearing in your 20’s or 30’s, so I’m not surprised your doctor was skeptical. That said, I would probably find another doctor. Also, telling people you’re hard of hearing and they need to speak more clearly does nothing. They think you’re just saying that, I guess. Because no one our age can have hearing loss.

I’m not a doctor or an audiologist, but here’s what my research tells me, and someone correct me if I’m wrong.

Otosclerosis doesn’t progress steadily. It can progress rapidly or you can go years without any changes in your hearing. So what you’re experiencing now isn’t necessarily indicative of how it’ll always be.

There’s not much data that I found on this, but it seems like it takes 10-20 years to fully progress. You’ll never be completely 100% deaf with otosclerosis, but by the time it’s progressed fully you will probably have profound hearing loss. That said, it seems like not everyone experiences this and some people’s hearing loss tapers off at mild or moderate loss.

Otosclerosis can spread to the inner ear over time, causing sensorineural loss.

There’s some debate about whether or not estrogen can contribute to otosclerotic loss. For what it’s worth, I started experiencing hearing loss after I started birth control pills.

I don’t know anything about the NHS, but you might be able to get HA there I guess. Reverse-slope losses can be difficult to program a HA for, so it might be better to start saving up for hearing aids. You could also look at a stapedectomy. I don’t know how that works on the NHS.

I’ve decided to go for hearing aids before surgery and I have a consult on the 16th. Surgery can “wear off” over time and I’d like to have as few surgeries as possible.

If you want to chat, feel free to PM me.

Shelby

Becki,

Have you actually seen an ENT doctor? If not go see one. I’ve known several people with otosclerosis and they have had stapedectomy’s or a stapedotomy. My aunt had a stapedectomy and her “repair” lasted about 19 years before the lesions returned. The other person I know had the surgery after about 20 years of using just a hearing aid and had improvement in her hearing, but still had to use a hearing aid after the surgery. If I were you I would go the HA route as long as you can before having the surgery because you may have to have it a second time further down the road.

I will be referred to ENT, doctor was going to refer me, but I am moving in a few weeks, so won’t have time to get everything sorted before then. Once I have moved, it will be the first thing I do

Shelby, I was about to PM you, but I can’t because I am a new member. Just wanted to say thanks for your reply. It means a lot knowing that there are other people who have had or are having a similar experience to me.

It’s interesting that you say about the birth control pills. I currently have the contraceptive implant, but have found very little information about whether that can affect otosclerosis or not.

I just want to know what is happening to me :frowning: I know everything there is to know about Otosclerosis, but nobody can tell me how it is going to affect me. I don’t want to wait weeks or even months to find out :frowning: I am only 21, this shouldn’t be happening to me

Hi Becki;

I, too, was diagnosed with otosclerosis in one ear (my right one) in June of this year, after a few years of increasing hearing loss. My left ear used to have normal hearing, so I really noticed the decline in the hearing of my right ear since the birth of my two children, the second of whom was born last summer, which supports the idea that otosclerosis is at least somewhat affected by female hormone levels. Anyway…it seems there isn’t that much known about otosclerosis. And much of what I’ve read about it seems contradictory from one article to the next.

I saw an ENT in August. He’s convinced that a stapedectomy would give my right ear “near normal” functioning, and told me that if I have the surgery done, the hearing in my right ear would equal that of the hearing in my left ear (which actually has a mild hearing loss). He sent off a referral to the ear surgeon; I’m waiting on appointment date with him. In the interim, I’ve been back to see the ENT again, because I seem to have a hearing loss that fluctuates by 10-15 dB depending on the day and how bad my Eustachian tube dysfunction is acting up. I’ve point blank asked the ENT if I could go deaf from this. He insists that I can’t - that the worst a conductive hearing loss can get is about 50-60 dB. Sadly, there is nothing on the internet to support what he’s saying. I also asked him directly about the possibility of otosclerosis spreading into my cochlea - thus leading to sensorineural hearing loss. He said, “It’s very rare. I’ve never seen a case where it’s spread into the cochlea.” But again, the internet makes it seem like that is at least a somewhat common experience… He was really unable to tell me if or how fast my hearing loss will progress… it’s very frustrating. He seems to think the surgery will fix everything. I don’t subscribe to that point of view.

Like Shelby said, it does seem that otosclerosis can progress rapidly or slowly. I, too, had a drop of about 10-15 dB in some frequencies in my right ear between June and October of this year. The ENT said that at my age, the hearing loss should have “almost maxed out by now”. From what I’ve read, the hearing loss does tend to get to its worst in a person’s late 30s/early 40s. I’m sure that won’t make you feel better at your age, but 95% of the articles I’ve read DO indicate that the conductive aspect of hearing loss in otosclerosis should be at its worst by the time a person’s in their early 40s.

Most recently, I’ve been seeing a new audiologist. The hearing in my “good” ear has dropped a bit this summer (my latest audiogram is in my signature below), which scares the heck out of me! The ENT thought that with my new audiogram, my left ear is now also showing signs of otosclerosis as there is now a significant conductive component to the loss, although not significant enough for an operation. My ENT isn’t at all concerned. I, on the other hand, am pretty worried. A stapedectomy isn’t a guarantee. Some people get years of benefit from the surgery, but many don’t. As of right now, hearing aidS (not just one aid as my ENT said) are in my future permanently I suspect.

On top of all of this, my audiologist, who is herself hearing impaired, is quite skeptical about the stapedectomy. She has 20 years of experience, and has quite bluntly told me that in her experience, my hearing loss isn’t bad enough yet to merit the surgery. She said that the difference between the air conduction and bone conduction tests should be at least 30 dB in order to derive the most benefit from a stapedectomy. The difference between ac and bc hearing for me ranges from 15 to 20 dB in most frequencies in my right ear. She also said that I appear to have some sensorineural hearing loss in the high frequencies in my right ear - yet the ENT insisted that was not the case. After reading A LOT, I’m sure my audiologist is correct. I have low frequency conductive hearing loss, but high frequency sensorineural loss… So is this otosclerosis? Now I’m not so sure. Hopefully the otologist (ear surgeon) can tell me what is ACTUALLY going on when I finally get in to see him, which should be in late December or early January.

Anyway, Becki…I’m sorry this is happening to you! If it’s any consolation at all, there are others who are going through what you are going through (like me!), so hopefully we can all support each other! Hearing loss is daunting at any age. One thing I might recommend is that you see an otologist - a doctor who specializes in ears only!!! ENTs are good, but otologists are really the experts in hearing pathology.

Please let us know how you are doing. Finding out about hearing loss can be very emotional, I know!!! I’ve had a rough summer coming to terms with it myself. Just know that you are not alone…

Kerry

I’ve been thinking since I read this about what to say in reply… but what can I say to that? Lol. How long since you first noticed a hearing loss did it take to get your hearing to the point it is at now? I know I likely won’t be affected in the same way, but what would really help me is knowing how other people have been affected by otosclerosis. So, if you have Otosclerosis, reply with how long since you first noticed a hearing loss did it take to get your hearing to the point it is at now, and that will really help me and probably others in the same situation that I am in. We could then work out an average and perhaps give people more of an idea of how long it takes. I know that everyone is affected differently, but that is what averages are for.

Hi Becki;

I was first diagnosed with a “slight” conductive low frequency hearing loss in my right ear only when I was in elementary school. It was not diagnosed as otosclerosis at that time. My next hearing test didn’t happen until I was in my early 20s, at which time the diagnosis completely changed. I was told that I had a very mild sensorineural hearing loss in my right ear (left ear was still normal), that nothing could be done, and to “come back when I was having trouble hearing”. Which is exactly what I did - go for another hearing test when I was having trouble hearing…this past June, nearly 20 years after my last test. So, there’s no way of knowing exactly how long it’s taken to get to the current amount of hearing loss because I wasn’t tested regularly.

What I can tell you is that when I got married 4.5 years ago, I could hear my husband’s voice in my right ear when I was in bed with my left (good) ear on the pillow. Now I can just barely hear his voice in that same situation. This leads me to believe that my hearing in the otosclerotic ear has changed substantially in the last 4.5 years. This would make sense because I’ve been either pregnant or breast feeding that whole time, which causes hormonal fluctuations which, as you know, can contribute to the worsening of otosclerosis. So…ultimately it seems my hearing loss has progressed the most in the last 4.5 years. I’ve also been told that should I ever need hormone-replacement therapy, that could cause further otosclerotic hearing loss. Most articles I’ve read, as well as my ENT, confirm that hormonal contraceptive use can increase the rate and severity of hearing loss.

You are going to be hard-pressed to find an average of how long it takes for otosclerosis to progress. I’ve done tons of reading, including peer-reviewed journal articles, and have a medical background myself, and everything I’ve read, seen, and heard confirms what I’ve already told you. Typical onset for otosclerosis is age 15-35. The conductive hearing loss usually reaches its maximum loss in a person’s late 30s or early 40s, although some literature does suggest hearing loss can keep progressing until the late 40s. (I’m 40 now, so in theory my conductive hearing loss should be as bad as it’s going to get.) It affects both ears about 75-80% of the time, with the onset of symptoms in the second ear usually occurring several to many years after onset of symptoms in the first ear. As the disease progresses, it can move into the cochlea causing sensorineural hearing loss, for which there is no permanent fix. Literature varies on who/how often otosclerosis moves into the cochlea. My ENT says it’s rare for that to happen; some literature indicates otherwise.

My hearing loss hasn’t affected me at all for most of my adult life. It’s only been within the last year that I’ve begun having any real difficulty understanding speech in noise and hearing low-to-mid frequency sounds. I suspect the hearing problem I’m having now is due to the fact that until recently, my left ear has been compensating for the loss in my right ear, but now the loss in the right ear is too severe for compensation alone. I’ve been wearing a hearing aid in my worse ear since September and will likely be getting one for my better ear in January. For most people with hearing loss due to otosclerosis, a hearing aid (or aids) is in their future. Even with a successful stampedectomy/stapedotomy, most people with otosclerosis will go on to need hearing aids later in life as it appears they have a higher incidence (and possibly higher degree?) of age-onset hearing loss.

From what my audiologist says, the most frustrating thing for people with any kind of hearing loss, otosclerosis or otherwise, is not knowing how quickly or slowly the loss will progress. We know that the hearing loss WILL progress, though, but to what extent remains an uncertainty for most people. On a positive note, if your hearing loss is actually ALL conductive in nature, you will likely be one of the “lucky” ones for whom surgery will restore the hearing completely. I hope and pray that is the case for you.

Kerry

Becki,
My sisters, sister in law has had Otosclerosis her entire adult life she’s had a stapedectomy’s in both ears , and then a second operation to clear out additional lesions that returned years later, but only in one ear, however, her type of Otosclerosis is fairly aggressive and continued to come back and she eventually had a Cochlear implant which has aloud her to hear again. She did have six children and several miscarriages which may of played a part into her aggressive Otosclerosis. Her brother also has a very aggressive form of Otosclerosis and now has a implant also, so maybe the hormones played no part but just bad genetic predisposition.

I noticed my hearing problem in my mid to late 30’s, had a very good otologist who was actually a pioneer in creating artificial stapes, Dr. Lippy in Warren, Ohio. I had my first stapedectomy around 1986, second around 1989. I noticed a huge improvement from the first one as that was my worst ear and less of an improvement from the second one. Later I started having a sensorineural loss too so wore one hearing aid starting around 1998 so I guess I got quite a few good years from the stapedectomies. A good doctor and audiologist are the key and I found really good ones in Ohio, Georgia, and here in Texas. I cannot have a high powered MRI due to the metal used for my stapes, hope that has changed now but I don’t know. Something to ask your ENT about if it is a concern at all, assume they have changed the material for the stapes by now.