Friday, May 2, 2014

My Cochlear Implant Journey

This is one of those times when you kick yourself for not taking notes and writing down your thoughts as things happen but I still feel like I need to share the details of my CI journey so that others can get an idea about what to expect if they are looking into it and so that the people in my life will know what I went through and why I was so absent from theirs during the time leading up to and shortly after my surgery.  The dates may be a bit fuzzy but I'm going to do my best to chart my journey.

By about February of 2012, I found myself in full panic mode with my progressive hearing loss.  My husband had signed me up for counseling and I wanted to do my part to shake off the depression and guilt that my hearing loss was causing.  I reached out to Caption Call to get a captioned phone hoping that would give me a little more independence, at least let me order a pizza without asking for my husband's help.  When my installer came in early April, we got to talking and it turned out she had two cochlear implants.  She asked me if I had considered them and at that point, I really didn't know much about them.  I didn't think I was deaf enough for one, nor did I think that I could afford one.  But in truth, I hadn't done any research into them in years.  I didn't realize how easy it would be to get one and that you didn't have to be completely deaf to qualify for one.  I also didn't really believe how bad my hearing had become. I did a little research and thus began my journey.

First of all, you should know that most insurance plans will cover it! Most have hearing loss guidelines that you need to meet, but most of us with hearing loss tend to downplay or underestimate our loss and think we would never qualify, so if you have severe loss at all or find that your hearing aids are just not working for you and you have top of the line aids, this is most likely an option for you. Don't doubt it until you speak to an expert, not your hearing aid rep but a surgeon who specializes in CI surgery.  Your hearing aid rep wants to sell you another pair of hearing aids; if you get a CI, you don't need them any more so they are not likely to recommend a CI to you.  And I know that is not the case with every audiologist and hearing aid distributor but it will be like that with many of them that work for places whose money is made on hearing aid sales rather than health care.  For a fair evaluation, see a doctor for help on this, rather than the person who distributes your hearing aids.  Make an appointment with an ENT or otolaryngologist.

So it's been a long time but I'm going to try to give you at least some kind of idea of the CI process.  First, I scanned in and emailed my latest audiograms to the audiologist at the Dallas Ear Institute and she called me back within a day telling me, yes, she thought based on what I sent her that I might be a candidate.  We set up an appointment and I was off for more testing...very, very thorough testing.  I was tested in the booth with my aids off and on, regular old beeping tests, speech discrimination tests, speech in noise, men and women's voices, words and sentences.  I was tested more than once on more than one day; finally, after the second or third visit, it was decided that I had a hearing loss that would benefit from the CI.

But it's not as simple as being deaf enough, you have to pass a whole array of tests to be a candidate.  I went to my family doctor for a complete blood test and physical to make sure I was physically healthy enough for surgery.  I had an MRI so my future CI surgeon could get a better look at what he was dealing with and to rule out any physical deformities in the ear.  I had a complete psychiatric evaluation to make sure that I was mentally stable enough to deal with the process of learning to hear bionically...hey, yall it's a requirement, not something they thought I needed personally.  There were more hearing tests and there was a balance test.  I had a ton of appointments and it wasn't easy but finally about 7 months after I made the first call, I was ready for surgery. 

I was also going to grief counseling during this time so I had multiple doctor appointments every week, sometimes up to three appointments in a single day.  I pretty much checked out on everybody and my friends and family didn't see much of me during this time.  But in the end it was worth it!

My surgery came in early August 2012 and I had to be at the hospital at 5:00 in the morning.  I was in surgery by 8 and on my way home by noon.  Not was that fast!

I was pretty out of it and didn't read the directions on my meds correctly so I didn't take enough of the pain pills and I suffered tremendously for it that first night.  I felt like somebody beat the crap out of my head with a baseball bat.  But once I finally figured out the correct dosage, the pain subsided and I felt much better. 

It was uncomfortable to sleep because I could not roll over onto my left side for weeks and that is my preferred side to sleep on.  I could also hear phantom sounds in my left ear which by this point was supposed to be completely deaf.  I could hear whole imaginary orchestras playing in that ear. It was weird but I just went with it and enjoyed the musical. It did eventually go away and I hear nothing in that ear when I'm not wearing my processor except for the occasional popping sounds.

After a few days, I was able to remove the bandages and I think I went back for a post-op at about a week.  I had no complications and about 3 weeks later I was able to get activated. 

I won't talk about activation today as I just wanted to give you an idea of what happens from the time you decide to contact a doctor about getting an implant to the time that you actually get one.  I can say that it is not an easy journey but I look back on it now and it feels so brief.  If you work, you need to plan for lots of time off for appointments and at least one month off for total deafness as you await activation, unless you can do your job without hearing.  After activation, you will have more appointments with both your audiologist for mappings and a speech and auditory therapist who will help you learn to hear with your CI.  Basically you need a good year to get it all done and if you don't take right away to the CI, you may need months if not years of auditory therapy.  I had a great experience and learned to hear very quickly with my CI.  There are a whole host of reasons why I was so successful and I want to talk to you about that too...but not today.

If you have any questions about the CI evaluation process, please ask them in the comments.  I will do my best to answer them or find answers for you if I don't know.

.....................................1.75 years with a CI and loving every minute of it!