After the episode of hearing loss that I had in May of 2012, I was given a steroid injection directly into my eardrum and put on a high dose of oral steroids.  I went back each week for a month for an injection into the eardrum and continued the oral steroids.  It took several weeks, but for the first time ever, I responded to treatment and some of my hearing was recovered!  I didn’t get all of what was lost from the recent episode back, but what I did recover was significant and made a big difference in my ability to function and in the quality of what I hear.  At my worst, what little bit I could hear was very distorted – there was no human quality to any voice I heard.  Everything was very mechanical.  It was like talking to computers all the time.  That was better than not being able to communicate at all, but I was so thankful to get back the richness and warmth of the human voice and be able to recognize people’s voices once again! Now, with hearing aids, I am functioning pretty well.  I still need to see people’s faces (mouths) when I am speaking to them, and I still need captioning on television and movies and still have to have people repeat things pretty often, but it’s really so much better than what it was!  I do need deaf products in my home for times when I am not wearing my hearing aids.  I cannot hear an alarm clock, phone, door bell, etc. without my hearing aids (occasionally I can pick up a faint sound and figure it something’s going off).  I still use my captioning phone most often but because it has adjustments that a normal phone does not have, I am often able to follow a conversation by sound.  I sometimes use the captions to fill in the words or sentences I miss and when the connection is bad, sometimes I still rely on them more than voice, but it is wonderful to be able to use a phone again and I sometimes am able to use a regular phone, depending on a number of factors.  I also have been given an official diagnosis – after 12 years!  Because I did respond to steroid treatment, along with many other specifics of my experience, the doctor has diagnosed my problem as Autoimmune Inner Ear Disease.  It’s good to finally know what is going on.  The bad news is that this generally still does lead to deafness eventually.  The good news?  It can respond to steroids so we might be able to slow the process, and when/if I eventually do lose my hearing, I should be a good candidate for cochlear implants.  They are not a magic cure-all, but would give me the ability to hear some sound and function to some extent.  I don’t know what the future holds, but I am trusting that God has a plan and that it will be a good one!

April 2013: After the improved hearing I mentioned in the update above, the doctor chose to use a treatment strategy of a slow taper off of the prednisone. This was to keep my hearing as stable as possible. Once I reached a certain level in the taper, I began to experience fluctuations in my hearing again. We decided to put me on a long-term steroid treatment. I was on prednisone for a total of 9 months and it did stabilize my hearing. Unfortunately, almost exactly one month after I completed that course of treatment, I had another severe drop in my hearing. That happened last month. I was put back on a high dose of prednisone and had 2 more injections in my eardrum. The doctor and I both were very disappointed. Apparently the only thing keeping my hearing stable was the steroid. It is very hard on your body to be on steroids long-term, and we began treating this episode with the understanding that we would do it as a short-term effort, but would not do another long-term course. I was scheduled for a 3rd injection, but the day of that appointment I had another drop in hearing. If it happens while on steroids, then they aren’t working, so we stopped treatment. This month I had a hearing test which confirmed that there has been no improvement in my hearing level – I am now at the level of severe to profound loss in both ears. My formerly “good” ear is now worse than the former “bad” one. My word recognition has improved from 9% in my left ear to 45% even though the hearing level has not improved. My brain may have learned to fill in the blanks better or there might have been a slight improvement in how distorted the sound is. My right ear has remained the same – around 30% word recognition. I am now a candidate for cochlear implants and am in the process of making decisions about that.

April 2014: I made a plan with my doctor to have a bilateral procedure for cochlear implants soon after my last update. Unfortunately, I was hospitalized with extensive blood clots (both lungs and both legs had multiple clots) and was forced to postpone my surgery for 6 months while I was being treated for that. During the course of that hospital episode, I also was diagnosed with severe sleep apnea. By the time I was cleared for surgery from the specialist I was seeing for the blood clots, my doctor of many years at the hearing clinic was on leave until January – possibly longer. My cost for having surgery during 2013 was significantly less than it would have been if I had waited until the new year to have it done, so I opted to go ahead and schedule surgery with a different doctor in the same clinic who was recommended to me. I expected to just pick up where we were before the delay in the plan for a bilateral procedure, but found that the blood clots and the sleep apnea both made me a much higher risk patient than I realized. My new doctor felt (and the other doctors in the clinic that she discussed my case with all agreed) that it was too risky for me to undergo the longer bilateral procedure. I had my left ear (the one that had been in the severe to profound range of loss the longest) implanted on November 13, 2013. Surgery went extremely well. I was kept overnight as a precaution and wore a compression bandage for several days because of the risk of bleeding since I was on anticoagulants. There was no pain (only a mild headache – I suspect from the tight bandage) and the day after surgery I woke up feeling great. Activation day was on December 3, 2013. I was able to hear sound and even understand quite a bit of speech right away. I have detailed the rest of that experience in my posts, but it was a great decision and I am having great results! I am hoping to be able to have the left ear implanted later this year.