Boston Marathon Bombing Injuries include serious ear and hearing damage :-(

Boston Marathon Mile Marker 19

As if Monday’s tragic events at the Boston Marathon weren’t bad enough…  Among the serious injuries is permanent significant hearing loss and tinnitus. Interesting to see quotes from my new doctor at MEEI, Dr. Alicia Quesnel, who treated some of the victims.

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One year surgical check up

Back to Mass Eye and Ear for a one year surgical check up.  I’m very healthy with no physical issues related to the implant.  In general, they like to take a look once a year in your ears and test your non-implanted ear.  Since the audiologist recently tested my non-CI ear, today the surgeon just checked my ears and the area where the implant is under my skin.

Everything looks great.  She also peeked at my audiograms and said I was doing good.  Right in the middle of where they want me to be.  She said I should be experiencing much more clarity.  My reaction is like a petulant child, “I guess so (smirk)”.  I know I sound like a broken record but I just want more.  I do not want to have any hearing loss.  Sigh… Yeah, it’s nice to want things, eh?

The surgeon who did my surgery last year has relocated so I was seeing this doctor for the first time.  I liked her a lot and she seems very smart and competent.  I am very fortunate to be in Boston I think.  I asked about preserving residual hearing should I pursue a second implant at some point.  She said that my hearing in my right ear is useful and understands my interest in perserving it.  When I was evaluated I asked this question as well and was told Med-El has some track record in this area.  However, I decided to go with Advanced Bionics.  Performance wise I’m glad and still think it was a good decision.  However, I do mourn the loss of my natural hearing in that ear although there wasn’t much (20%).  For now I’m happy with unilateral because when I take off the implant I still have enough hearing to communicate, albeit in a limited way.

Another question I asked about was if MEEI recommends to pediatric patients not to use sign language at all.  She said that they would not want the pediatric patient to exclusively use sign but that it’s fine as another communication tool if it helps.  I was really glad to hear this because my recent exploration of ASL has been so interesting and to be honest, it feels great because it’s a way to communicate where I am not limited in ability, beyond my lack of fluency which I can do something about!  I love the idea of using any and all communication tools that help you.



Look Ma! I’m a human test subject

Last week I participated in my first testing session as a human subject in a research study at Mass Eye and Ear. I sat in a sound booth, the research scientist connected an older Advanced Bionics processor that they can program and tinker with. The first session involved stimulating all 16 electrodes, one at a time, on the electrode array of my internal implant and establishing thresholds for loudest and and softest sounds. The good news is that all of my electrodes are getting good response from my auditory nerve. The device and my brain are working. No jokes about my brain, okay? I did not enjoy the stimulation of electrodes 15 and 16, which are positioned at the base of my cochlea and pick up the highest frequency sounds. They got too loud quicker and the loud sound made me feel momentarily woozy. My theory is that this is the part of my cochlea that has been dormant the longest, perhaps always, and is the least used to sound. I’m fine though. It’s been a week and everything is still working. Plus when I signed the consent forms there’s some language that says, more or less, that they’ll fix me if they break me.

The research is being conducted by a PHD student who is affiliated with MIT. His background is in biomedical engineering. The purpose of the research is to experiment with stimulation of electrodes in the cochlear implant in an effort to reduce current spreading. The hypothesis is that if they can be more precise with how the current is directed when electrodes are stimulated that the speech perception will improve. And who knows there could be other discoveries along the way.

I’ll volunteer every couple of weeks or so. The duration will depend on how the experiments go and my availability. I can opt out at any time if I need or choose to.

I hope I can help. I figure I’ll learn more about the implant and how it works. It will help me better understand what it can and cannot do. I’ll also get a sense of what could be coming in terms of improvements. And if I’m really lucky I’ll get to try some cool beta software that helps me hear even better 🙂

Hearing Loss… It’s not just old people.

Some introspection related to a comment I read in an article about web accessibility testing for with people with disabilities. Hearing loss, or impairment as they called it, is described here. I personally don’t have a preference regarding terminology used.

“Hearing impairments: This includes varying degrees and onset of the impairment, such as complete deafness from birth or lower hearing capabilities developed as we age.”

While hearing loss is more common in the older population, it is by no means exclusive to that group.

Hearing loss isn’t just old people. Hearing loss affects all ages. It’s kind of funny because many of us with slow progressive loss live with it without saying anything for a long time. Too long usually :-{ By the time someone with a progressive loss finally comes to terms with their hearing loss, or is badgered into acknowledging it by a spouse or family member, they are in fact older. So the perception that it is primarily an age-related issue is reinforced.

Those of us who advocate for more awareness about hearing loss and its impact are trying to change that perception. Part of the motivation touches on another bugaboo “ageism”. Unfortunately, when we categorize a problem as related to the older population, there seems to be a tendency to view it as less important. That, I think is a whole other discussion, which is also very worthy of attention.

I was diagnosed with hearing loss in 4th grade. I’ve had slowly progressive loss from age 9 to age 50. Now, thanks to a cochlear implant, my hearing loss has lessened, when I’m wearing my CI processor. A lot. But it’s still there in a mild to moderate level, depending on the listening situation. While I had earnestly hoped to leave that group I’m learning to accept my imperfect hearing and I’m learning how best to minimize any inconvenience it causes in my life.