I don’t even know where to start in this post so I guess I’ll recap some of the beginning and go from there. Last June (2013) I went for my first hearing test in 20 years. I was told I had low frequency conductive hearing loss that could possibly be corrected by surgery, as well as a “small amount of SN high frequency loss” in my right ear (with my left ear being low normal) and referred to an ENT. Fast forward to August when I saw the ENT, who diagnosed me with otosclerosis and told me “a stapedectomy will fix your hearing permanently” (which I knew not to be true, at least in terms of the longevity of a stapedectomy). After two subsequent hearing tests, allergy testing (to determine cause for eustachian tube dysfunction), and finding a different (read: competent) audiologist, I then saw an ENT whose specialty is in ear surgery. He’s not an otologist apparently, but he is one of only two ear surgeons in the city where I live. He took a look at all 3 audiograms and told me that based on the fact that my conductive loss appeared to be predominantly in the low frequencies, and the loss in the higher frequencies looked to be sensorineural, he couldn’t diagnose me with otosclerosis, but rather mixed hearing loss with a conductive loss of unknown cause. He told me it was hereditary, that it would likely progress, and that was the end of that visit.
In February of this year I began seeing a new GP who did a large part of her residency with ENTs. She looked at my audiograms and told me that I might want to go for a second opinion. So I did. I saw a neurotologist today. His diagnosis was mild otosclerosis. He feels quite confident that a stapedotomy is in my future. I asked him directly how the only two ear surgeons in my city could come to completely different solutions. He answered saying: “You asked for a second opinion. This is my opinion.”
Today’s neurotologist essentially told me that the timing of a stapedotomy is up to me. He said he could do it in one year, which is how long his wait list is, but he didn’t think I would derive that much benefit from it at that time. He told me to have my hearing checked every 6-12 months, and to go back to him when things got worse. When I asked him to quantify “worse”, he simply said, “when you don’t feel like wearing a hearing aid anymore”. He wasn’t willing to give me a severity category because he said different people have stapedotomies done with different levels of hearing. He described my otosclerosis as “mild” but the hearing loss in my right ear as “moderate”. He also told me that, on average, stapedotomies tend to wear off in 10-15 years, stating that, of course, there are exceptions in both directions. His strongest recommendation was to have it done prior to my return to the work force once my kids are old enough to be in school. The other thing he said is that while he feels most confident that it’s otosclerosis, he thinks another option could be that there is some sort of breakage in the ossicular chain. Either way, he recommended exploratory surgery “when I’m ready”. Worst case scenario, according to him, is that I have extensive erosion of the ossicles and nothing can be done at the time of surgical exploration, in which case he’ll send me on my way and make some recommendations regarding implantable hearing devices.
One other thing he said, that has certainly fit with my experience, is that the “traditional” set up for hearing aids often doesn’t work for the person with a predominantly conductive loss. Honestly, while everything is definitely louder in my aided ear, speech is way more garbled with the aid than it is without the aid. I often don’t wear my hearing aid because quite frankly, I understand speech more easily without it. Yes, people need to speak louder, but at least I understand them! With the aid in, even if they speak louder, it’s not always intelligible to my brain. I have discussed this with my current and past audiologist, both of whom have said there isn’t anything else they can change…
I went to today’s appointment thinking that the neurotologist was going to follow up with my eustachian tube dysfunction, and tell me that otherwise my hearing was just going to deteriorate and nothing could be done. His diagnosis of otosclerosis and recommendation for treatment couldn’t have surprised me more! I thought that door had been closed, so now I have many questions:
-How is it possible that two specialists in their field could come up with completely different diagnoses and recommendations?
-How can I know whose diagnosis is correct? There isn’t a third specialist in the city I live in, and even if there was, I’m not sure I could mentally handle another different opinion.
-How do I know when/if my hearing gets bad enough? I’ve read that surgery isn’t the best option (that the results won’t be as good) unless the hearing loss has gone beyond the moderate level. Is this correct? If so, does that mean I basically wait until I’ve gone into the moderately-severe or severe range?
-Everything I’ve read says that a conductive hearing loss should max out at about 60 dB, so do I just wait until that point to have surgery?
-What are the chances of this turning into cochlear otosclerosis? He indicated that if it hasn’t done that by now, at my age (41), it’s not likely going to move into my cochlea. Is this the experience of others with otosclerosis or those who treat people with otosclerosis?
Would it help if I posted the results of all my audiograms? If so, say the word and I will do it.
At this point, I’m confused. I don’t think my hearing is bad enough at this point to risk surgery, so I’m not planning on going that route as of now, but if things get substantially worse, then I might consider it if I have enough information to make an informed decision.
Thank you, in advance, for sharing your wisdom. I just have no idea what to even think after today…
Kerry
And if that ever happens, there are cochlear implants.