Consider the Alternatives

I was diagnosed with Otosclerosis in 2002. In Sept. of that year I had a stapedectomy at U of WA. I got some hearing with horrible dizziness for 3 weeks and then it failed. 30 days from the first surgery I had it redone. I got some hearing and the dizziness went away. In 2004 I woke up completely deaf in that ear and the cochlea died. I have a BAHA implant in my skull and I highly recommend that. Due to the complications with the first ear, I cannot risk a stapedectomy in the second ear which is rapidly growing worse. I do have a hearing aide in that ear that works very well. If my cochlea becomes involved as it can in severe cases, I could end up 100% deaf. I wish I had never had the stapedectomy because that dead cochlea really limits my options. Probably a cochlear implant would be my only hope if that happens. I am a teacher and this is really hard for me. I will also someday be sole support of my family as 6 months after my first surgery, my 49 year old husband was diagnosed with Parkinson's and 6 months after that my oldest son fell ill with a neurological disorder for which there is no cure. To add insult to injury, you have to fight the insurance for anything involving hearing loss. They can replace knees all the time, but they want nothing to do with hearing appliances. They did pay for my BAHA surgery but I will have to pay for the next appliance when this one wears out in a few years. I am thankful for technology that has kept me going this long. It is all very scary for me and sometimes really gets me down. While the surgery works for most people, it carries risks. Consider those strongly. If you go ahead, I wish you good luck. I also would not hesitate to recommend the BAHA implant to anyone who needed it. It has been a miracle for me. I pray that research will save my children from this. Both of my parents had it in their 60's and 70's. Mine came on in my early 40's. It is highly inheritable I have been told.
rubyslippers74 rubyslippers74
51-55, F
3 Responses Jun 24, 2007

Ruby your story is exactly the same as mine except that I lost the ear to surgery when I was 17. I could not agree more that the surgery is one with HUGE risks. I also have the BAHA and so on. I have never had anyone give me the slightest understanding for this, I have always lived normally and worked myself crazy...I have decided to retire early because I do think it is a stressful way to live. Look at StapeDOTOMY vs Stapedectomy for your children. It is 50% passed to your kids. Mine started at infancy, but leveled off completely by age 20. Losing the ear was the killer. Good Luck

I have otosclerosis also. I had the surgery a few years ago & now seem to hear very little in that ear. Very recently my other ear has been dramatically declining. I too am leary of having surgery on it now. I have the tinnitus (heartbeat) in my second ear just like the first ear & some days it drives me crazy. I have been very depressed lately. I feel like closing myself into my room & not coming out. I will be 43 years old this year.

Best of luck to you.