When you get diagnosed with otosclerosis, a disease that hardens/fuses the bones in your ear(s) that makes it hard to hear, you are given three choices: 1. deal with it. 2. get hearing aid(s) or 3. get a stapedectomy(ies), which is a surgery that removes your damaged bones and replaces them with a prosthesis.
- I have been living the last three plus years just coping with my hearing loss, and conversations are getting more challenging as my disease progresses. I cannot just deal with my loss any longer.
- Because I also have a severe reverse slope hearing loss, hearing aids just don’t work for me. I tried a few and they made my good hearing worse and didn’t improve my bad hearing.
- This leaves me with a stapedectomy.
This choice was not made easily. These were my five biggest deciding factors, in no particular order:
- I can hear, kind of. If I had hardly any hearing left, I would think “what do I have to lose?” and I would jump right in. However for me, since I still have a large portion of my high rage hearing, my life is far more grey. I can hear, kind of. I can communicate, kind of. If you have a loud high pitched voice and there is no background noise and I can see your mouth, I can communicate just fine. But when do I get these perfect scenarios? Hardly ever.
- I won’t get all of my loss back. Another thing for me to consider is not only do I have conductive hearing loss (from the hardening of my bones), but I also have cochlear hearing loss. We aren’t sure what is causing this loss, I could have had it from birth, or it could be a rare form of otosclerosis. It could be progressive and one day I will go Deaf, or this might be the worst of it. If I get a stapedectomy(ies), I can only get back the hearing up to whatever loss I have from my cochlear loss. I will never have 100% hearing again unlike most of the people who get a stapedectomy(ies). The good news is from my hearing test you can see how much cochlear loss I have. If I get 100% of my conductive loss back, I will be looking at only a mild hearing loss compared to a severe hearing loss. I will gain all of the “speech banana” back.
- I need to trust my doctor. Finding a doctor that you trust is one of the most important factors to any surgery. This particular step has been a journey for me to say the least. The first otolaryngologist (ENT) I saw three years ago was horrible. He told me, “I don’t know why you lost your hearing, I don’t know if you will one day go Deaf, but come back in a year and we will retest.” Then once we moved I searched and searched for an ENT that specializes in otosclerosis. I could only find one in network within an hour drive, so I went to see him. There were A LOT of red flags I won’t go into here, but let’s just say I left a negative Yelp review and kept looking for my doctor. I called dozes of offices around and none of them performed stapedectomies. Finally someone referred me to “the one.” He is a professor and Chief of the Division of Otolaryngology-Head & Neck Surgery for the local top rated medical school. Not only that, but he has done research about hearing loss caused by autoimmune disorders, which otosclerosis is thought to be. If anyone was going to know what to do with me and my unique hearing, it was this guy. After meeting him, I felt completely safe and at ease. He told me I was a candidate for a stapedectomy even though others said I couldn’t get one. He even said stapedectomies are his favorite surgery to do!
- Something really bad might happen. From what I have seen in the oto community, this is what stops people most from getting a stapedectomy and why a few people in my life have told me not to get one. Unfortunately, the cold hard truth is “something bad” can happen to any one, at any time. Yes, of course there are some risks, as there are for any surgery, as there are to leaving your house. The biggest risk with a stapedectomy is losing my hearing completely in that ear. So thinking “worst case” and I lose my hearing in that ear, so what. What would happen to me? I already can’t communicate well with others, so that isn’t a huge scary factor to me. I would still have one functioning (well, as well as my ears function) ear, I could look into getting a cochlear implant, and/or I could embrace it and become fluent in ASL. What is the risk of something “really bad” happening to me? My ENT said one percent. I can live with those odds. At the end of the day, I’d be at peace knowing I did everything in my power to get my life back and have something go “wrong,” than sit back, not try, and watch my life pass without fully being apart of it.
- I’m struggling. In high school I considered myself an extrovert. Now, I’d say I am an extroverted introvert. I recharge by sitting on the couch binging Netflix, but I still really love getting out and having a good time once in a while. Except lately, I don’t. Five years ago I was known for my quick wit and humor. Turns out, when you can’t hear the conversation it is really hard to have quick wit. By the time I piece together what had just been said (if I do at all), the conversation has moved on to something else and the only response I can squeeze in is a smile and nod. I am positive if you did an anonymous poll of my current friends, they would consider me pretty boring. I consider myself pretty boring now, and I hate it. While I was debating whether or not I should get the surgery, the one biggest piece that sealed my decision was something my father-in-law said. I have been with my husband for 12 years now, so my in-laws knew me well before my hearing loss. After my last appointment with my new rockstar ENT my father-in-law and I were texting back and forth about the appointment and he said, “It will be nice to have you part of our conversations again.” After reading that line I started sobbing. I haven’t been part of the conversations in a long time. I need to do everything in my power to get back in the conversation. I need to get my life back. I need to get “me” back.
So what does this mean? Well, in two days I will be going in to get my left stapes bone removed and get a prosthetic one in its place. Recovery time can be anywhere from a few days to a few weeks. After it is fully healed I will need to get another hearing test to see what hearing I have gained back. From there, I can choose to get my right ear operated on.
I have a lot to lose, but I have decided I have far more to gain. Here goes nothing!