First time air travel with my implant. What’s that gonna be like?

airplane in flightSo my CI friends say air travel is no biggie.  Security scanners, etc. should all be fine.   I’m supposed to walk on through with the “normal” folk.  My surgeon advised me to heed any warnings for people with pacemakers since that’s another surgical implant with metal in it.  Uh, okay.  It’s been a while since I’ve flown anywhere so I am a little nervous.

I decide to wear my Harmony on-ear processor, put my Neptune processor in my pocket along with my Advanced Bionics ID card.  The reason I’m carrying hardware on my person is because I’ve read warnings that the processor microphones are sensitive and can be damaged by luggage x-ray scanners.

At Logan, it’s my first time going through the full body scanner thing.  I just do what that tell me.  Stand there with my arms over my head.  Didn’t feel a thing!  The young woman sees something, I guess my implant and hardware I’m carrying.  I immediately tell her that I have a cochlear implant and that’s what’s she’s seeing.  She asks if I’m willing to be patted down on the spot or if I want to go somewhere more private.  I tell her to go for it and ask if they do back massages as well.  She smiles.  No problem.  On hindsight, I should remember not to joke with TSA agents.  A sense of humor isn’t one of their job requirements.  I was lucky and the people I dealt with were quite nice.

One slip up had nothing to do with my implant.  I forgot the requirement about limited sized liquid carry ons and that they needed to be in a quart size ziplock.  Another agent had to open up my bag.  Took a little bit of time but he was nice and no problem .

Waiting at the gate I don’t hear clearly when the gate attendant calls to start boarding.  I quickly approach her, tell her that I’m deaf and that I did not hear the announcement.  They immediately tell me I can do advance boarding.  Cool!  I’m one of the first on the plane and can easily stow my carry on bag.  And the staff on the plane check in with me to see what I need.  I tell the flight attendant I can hear pretty well with my implant but that he should check on me if there are any important announcements.  I then joke and say, “Just remember to save me!”.  He laughs and high fives me.

Take off.  Okay what’s gonna happen now???  I’m wearing my Neptune processor now and the loudness of the take off is bugging me so I remove the headpiece microphone.  Again, nothing happens to me physically.  Don’t feel anything weird, bad or uncomfortable.  Oh yay!  Cochlear implant recipients really can travel by air.  I am such a doubter!  Only once I try it myself do I truly believe.  Does that make me a bad person?

Next fun thing.  I can plug my direct connect audio cable into the audio jack on the arm rest to listen to the in-flight movie.  So far I’ve been too distracted by other stuff but I think I’m hearing it pretty good!?  I will have to pay more attention.  This is cool and it makes me happy.

Plugged my head into auditorium sound system. Cool.

Again, I had a large meeting training event on my schedule in an on campus auditorium.  I contacted the event organizer and asked if the space had an assistive listening system.  They contacted AV, who was working the event, and found out that the auditorium had an FM assistive listening system.   Not very often used but there and they could give me some headphones to try it out.

The headset had in-the-ear type earbuds and a sort of stethoscope type piece under your chin with a receiver in it to pick up the audio transmitted via FM.  Anyone could use this system for amplification, it does not require hearing aid or cochlear implant.  Problem:  The design of the headset was not compatible with my implant’s processor, nor with most hearing aids that I’m familiar with.  I would need headphones that go over the ear 😦

But I don’t give up so easy.

The day before the training I visited our AV department in person to confirm the headset  issue and ask about other options.  They were great and willing to work with me on solving the problem.  I mentioned that my processors allow a direct connect with a standard  3.5 mm stereo jack to audio sources, like an ipod.  At the moment, when I was chatting with them, there was another event in that same room.  They offered me the option to test on the spot.  As luck would have it the event was on lunch break.  I ran over there, tested, and voila it worked!

On the day I was attending the training, the AV guys arranged a reserved seat for me with a very long cable and a special connector box that was under my seat.  During the event all audio via microphone was mainlined to my cochlear implant.  It really helped a lot.

While this solution isn’t as flexible as I like, nor is it scalable to more users who might need similar assistance, it worked dammit!  Oh hallelujah!  Finally a benefit that’s really making a difference for me.  Assistive technology may be my new friend.

So now I need to find out what more portable, scalable options I can get my hands on and test.  The AV guys at my workplace have been awesome and I know they will work with me.  We will make MIT’s public spaces accessible to hard-of-hearing.  I’m excited to make this happen!

6 months and still not done

Visited the audiologist for my 6 month check in / tune up.  Still struggle with getting upset when I get tested with the dreaded word recognition test.  Will I ever get used to this????  Each time, the poor audiologist gets an earful of whiny, teary, adult temper tantrum complaints.  God!  It’s so embarassing.  She tries to reassure me that I’m not worst one she’s seen.  Hmm… some small comfort I guess.

Bottom line is the device is working well.  My test scores have improved again. I’m not a superstar but I’m better than average.  My latest WRS is 74%.  Considering that I started at 20% that’s obviously a big gain.  And so, the audiologist is baffled that I don’t feel like I’m doing that much better.  Frankly, I’m baffled too.

Don’t get me wrong.  I am hearing a lot more, especially environmental sounds.  And I do like this.  However, what tends to stick out for me are my trouble spots.  The typical complaints of CI users regarding the challenges of speech discrimination within background noise, especially competing conversations.   For example, certain soft voices, hearing people in larger meetings, group social situations, background noise.  I understand that this is very common for CI users.  Disappointingly, the most troublesome situations pre-implant are still troublesome for me.  And here’s the baffling part, sometimes it even feels more so?

Since I’m in a science and technology research environment, at MIT, I am curious to research possible explanations outside of my crazy brain, either physiological or technical that may explain some of my qualitative experience.   I want to learn more about how my hearing and CI work.  How they sometimes work together and sometimes are seemingly at odds.  My left ear now has 100% electrical hearing via  the cochlear implant and my right ear still has some usable natural hearing with no hearing aid.  Last time my right ear was tested it was at approximately 30%.

In my limited research so far, I stumbled upon a scholarly article that explained in-depth the workings of the CI, including science, technology,  surgical and user experience issues.  While there were parts that were beyond my understanding, much of it was very interesting and accessible to the non-engineer/scientist.  Amazing and fascinating, what an accomplishment.  As the paper says, the cochlear implant is “the most successful neural prosthesis” and “the over-arching goal of a cochlear implant is to use electric stimulation safely to provide or restore functional hearing.”  Note that this says functional hearing, not normal, not perfect.  And I can tell you from direct experience it is definitely functional.  Why am I so incredibly demanding!

The paper also touched on the fact that natural hearing still far outpaces CI hearing especially in terms of background noise.  It suggests that binaural low frequency hearing can be  helpful in discrimination ability.

My Hypotheses

For why the hearing in noise is impacting me the way it is.

  • I did not use hearing aids, which have similar challenges in noise.  Many CI users exclaim how much better it is than a hearing aid.  And, hearing aid users face similar challenges as CI users do with hearing in noise.  Had I used hearing aids previously, the transition to a CI might not seem so challenging in noisy situations and would feel, overall, like a big improvement.
  • Prior to my implant, I had some lower frequency residual hearing in both of my ears.  I could still hear speech and heavily relied on lip reading.  While my overall hearing was perhaps minimal, the binaural ability I had may have assisted me with discrimination in noise.  The loss of residual hearing in my left ear, could feel like a set back in terms of coping in noise.
  • It’s just a matter of time.  Eventually I will do better.

Thanks for reading!

Barbara