Hearing things

I was told yesterday by a speech therapist that I hear myself speak via bone conduction, which is a different phenomenon than what I need to hear others' speak.  That explains that, I think.


Also, the crackling is back.  My implanted ear has been crackling on and off for a day or so, just as it did the day after surgery.  There's no pain with this, just the sound.  It must be part of the healing process.

And so the year 2011 is about to end.  The big question is, What kind of hearing will 2012 bring?  Stay tuned....

How do I hear that?

I was lying in bed last night waiting for sleep to find me, my deaf, implanted ear up in the air and my damaged ear sunk into the pillow, when I realized I was hearing something that sounded like rain outside or white noise.  I got up and wandered around to see what I could be hearing: it was our room humidifier.  How did I hear that?

It reminds me of a visit to my audiologist about a year ago, when I was living with two very powerful hearing aids and two very damaged ears (less than 5% hearing in either ear).  I had gone to a Philadelphia Orchestra concert a few days earlier that had been conducted by our incoming conductor, Yannick Nezet-Seguin.  He had pulled such a wonderful performance out of our group, with subtleties and nuances, variations in tone and crescendo, and feelings of soul, the likes of which I had never heard the orchestra perform that I could not help but rave about it.  My audiologist looked at me with amazement in his eyes and said, "How could you hear that?"  I don't know, but I did.  'Tiz a puzzlement, hmm?

Pain and Tylenol

The sporadic pain still bothers me sometimes, throbbing slowly for a while.  If I then take Tylenol, it generally disappears within 20 minutes or so.  Then again, if I don't have the Tylenol nearby and I postpone taking it for a while, the pain also usually disappears within 20 minutes or so.  Not always, but usually.  So what does that suggest?  I'm not sure, especially since it's throbbing right now and I took Tylenol less than 2 hours ago.

Someone emailed me yesterday to tell me that her surgeon had told her not to use an electric toothbrush after CI surgery.  I asked my surgeon and his nurse said it was fine to use one.  So does that clear up that issue?

I'm trying to pay attention to what I hear, and don't, these days.  Being deaf in one ear and almost deaf in the other certainly does make outside sounds seem farther away and softer.  I feel as if people are whispering instead of talking around me.  Of course, still having some of that cold doesn't help.  But there is not a huge difference in what I can and can't hear.  I still can't hear much, but I couldn't before the surgery either.

Fifteen days until activation.  I hope there will be a big difference then.

My stitches are gone!

I just returned from HUP, where my surgeon's nurse removed my stitches.  Does it feel different?  A little bit freer, I think.

She also answered a bunch of questions for me.  Yes, the wound looks fine, a little tender in one spot but no infection, the little bit of scabbing is okay.  Yes, I can now wash, cut or color my hair, being careful not to let water get into the ear.  I should use a cotton ball with a bit of Vaseline on the end of it to keep the ear canal dry.  No, I still cannot blow my nose or sneeze (except with my mouth wide open) for another week, preferably two.  Yes, still having intermittent pain is normal.  It will probably continue, though with less frequency, for a few more weeks.  Yes, I need an appointment with the surgeon.  When?  For about three months from the date of surgery, unless I become aware of a problem.  (I made that.)  And, yes, I can play tennis again about a month after the surgery.

So I'm clearly on the mend.

I want to revisit the dental floss issue, however.  Contrary to my expectation the day I posted about that, I am still not comfortable using the one-handed gizmos because of the tension needed to remove the floss.  I do much better with a proxy brush and my electric tooth brush and poker.

Ready to drive?

I'm still not ready to drive, although it has been more than four days since I took anything stronger than Tylenol.  How do I know?

Well, this morning I made oatmeal for us.  When I opened the microwave, I was dumbfounded to see it slithering down the side of the Corning Ware bowl to join the glob of goop lying on the glass plate leaning against the bottom of the bowl.  I tried to figure out what had happened while we cleaned up the mess.  Then it dawned on me: I had added instant hot water to the dry oatmeal, rather than cold, before I placed the bowl in the microwave!  Then, to save what was left in the bowl, I next added cold water to make it thinner. 

I think I'd better stay in the passenger seat for at least another few days.

Old attitudes and new tricks

Yesterday I woke up with renewed energy and found myself eager to finish whatever I started, tidy up after myself, and try to look decent--after not caring one iota about those things since Monday.  Part of my "crazy clean" personality had resurfaced.  Of course, it didn't last, but it made an impression on me as a major change of pace.  I am indeed on the mend.

Our Colorado-based daughter cum nurse, cook, laundress, receptionist, maid, shopper, pastry chef, and love came to spend the week with us last Sunday, just before the surgery.  What a gift that was!  She kept us company, kept the house running, and double-checked to be sure that we followed doctor's orders.  We cannot thank her enough!  But now she is on her way back home and we are on our own.

Yesterday my brother told me I sounded "quite normal" on the phone and today a friend asked me if I hear myself when I speak, and I realized that I have never questioned either of those things.  It never occurred to me that I would not sound normal when I talk and it never occurred to me that I do indeed hear myself speak.  Both of these were eye-opening questions to ponder.  For the record, today, five days after CI surgery, I sound just like myself with a cold (to myself).  I do still have a cold although it is beginning to fade away.

I am one of these people who often grabs glasses, or at least magnifiers, to read in certain light or at certain times of day.  I had not done so since my surgery, though, because of the wound near my ear.  I remember having read on one of the SayWhatClub e-mails that some people take one stem off their glasses to get around that issue.  So yesterday my husband did a nifty job of making me a one-armed pair of glasses, which I am loving!  Seeing with them is much better than squinting to see without them.  Thanks, honey.

Then, last night I finally decided to do a real job of cleaning my teeth before I went to bed.   Enough of this tap and rinse stuff.  Well, I don't know about you, but I am a two-handed floss glider.  And I tried to get my hands situated in some way so that the floss could do its thing, but except for the few teeth in the front, it was impossible.  When you can barely get your mouth open wide enough to slide a plump raspberry in, getting your floss-guiding fingers into position is hopeless.  So this morning we bought some one-handed gizmos that carry their own taut floss strip, which I knew I could get into my mouth--horizontally--without getting into serious pain.  I just tried one.  It works pretty well for the non-CI side but I don't think I'm ready to use it for the back teeth in the CI side just yet.  It requires some serious resistance pull against your jaw and teeth to disengage it and I think my CI side is still too tender for that.  Still, getting 3/4 flossed will be much better than what's happened since Monday.

We went out to a restaurant for dinner last night, bumping into friends who were surprised to see us there.  Being out definitely made me feel like I'd survived the surgery part of this adventure and had passed on to the climb toward activation.

Pain versus lack of pain

I must say the pain killers work.  I was pain free for 9 hours on one full dose, until I was rudely awakened at 4 a.m., realizing that I needed more.  Then I had real trouble coming out of that foggy, groggy state when I had to wake up at 10:30 this morning.  So the question is, Should I be "with it" with some pain or "out of it" with no pain.   That will be the major decision I make today.

I post these experiences, not to get your sympathy, but so that those who are behind me in this path and will be getting an implant will know that there is some discomfort involved.  Not enough for me to question my decision but more than I was expecting from what I had read.  The good thing about it is that there is no stress pain, as from bending at the waist after an appendectomy or sitting on a new hip after a replacement or putting your weight on a new knee joint.  It is merely my body complaining about making room for something new in my cochlea, which the surgeon shoved in when there was no natural space designed for it.  For me, there has also been no surface pain from the incision. 

But, as Maurice says, We are each a snowflake, unique in our own way.  So your experience is likely to differ from mine.

On second thought

I must say that the deep pinches are now painful and I am upping my pain killers.

Progress

One of the things that helped with the almost-nauseous feeling was wrist pressure bands.  I put them on yesterday afternoon, having remembered that we had some, and kept them on all day.  I took them off when I went to bed for the night and didn't miss them overnight, even when I woke up, but this morning when nothing sounded good for breakfast, I put them back on.  They definitely help me.

My cold continues to be my main complaint.  I even sneezed a few times today (something I'm not supposed to do but couldn't help) and was very concerned that I was knocking something out of place.  But I did keep my mouth open and, as far as I can tell, I did no damage. 

I took a shower this morning and everyone in the house was very relieved (-:.  I still don't have much of an appetite, but if I lose a few pounds this week, that will not be bad. 

The main change in what I feel is that I now have sporadic sharp pinches on the implant side (it feels like they come from deep in my eardrum), as predicted in the literature.  I am also still very tired.   I slept 12 hours last night and just took a nap for about an hour.  That, too, matches the predictions I've seen throughout the SayWhatClub emails. 

I think my hearing on the damaged (not deaf) side is a bit better today than it was yesterday.  Maybe the cold is beginning to recede.

Not so fast...

Well, the first 12 hours or so were a piece of cake, but the next 12 were not so easy.  The pain killers wore off too fast, my mouth and throat and lips were really, really dry and the cold I got from Lee was becoming more of a problem.  So last night I was up a lot, looking at the clock and trying to make it move faster, and realizing why so many people complain about the plastic cup that protects the wound and the headband. (I looked like a Revolutionary War soldier.  Gorgeous! And I felt more like I had been in a battle.)

I was also on the verge of being nauseous whenever I woke up, which was frequently.  So it was not fun.

Today I am better again.  I started drinking more (I was afraid to drink a lot when I felt nauseous).  We took the bandage and cup off and that was a big relief.  And Lee bought me some popsicles, which have really helped the ultra-dry mouth.  And I just woke up from another delicious nap.  So, I'm not complaining.  I'm doing pretty well, all things considered.

Yesterday I did not notice a tremendous difference in my hearing before (having two damaged ears) and after (being deaf in one) the implant.  Today there is more of a difference, most of which is due to the cold I have, I think.  A cold always blocks some of the acuity in hearing.  So I am not hearing much at the moment.

Surgery Day

Into HUP at 5:45 a.m. and out and home by noon!  All went well.  I am relieved, of course.  I am not in serious pain, dizzy, nauseous, more unbalanced than usual (-: or otherwise miserable, except for the "it" that I did get from Lee.  It arrived at 9 p.m. Saturday evening (Sorry, Ed and Ev) and has me on the verge of a cough almost constantly.  But, with no fever, the surgery went on.  Thank goodness!

I am taking it easy, as directed.  More another time.

Just listening

Today I find myself listening to what I can hear as I roam around and wondering what I will hear after my surgery on Monday makes me totally deaf in one ear.  I noticed, for example, that when I drive around I hear different sounds of the car meeting the road, on the highway or small road, over a bridge, or over patched areas.  I can't hear my turn signal beating.  But I am aware of a lot of sounds, even with my less than 5% hearing in either ear (in the most important range, that of voices).  How much of this will I still pick up with just one ear until I get activated?  I've been assuming that less than 5% is not much different from zero, but today I am wondering about that.

My friend Lonnie suggested last night that I explain in my blog what the surgery entails, for those of you who don't know.  I initially reacted negatively to that suggestion but the more I thought about it, the more I agreed that it might be helpful.  So, here I go.  (If you are squeamish, skip the next paragraph.)

The plan is that the surgeon will make a slit down my scalp behind one ear.  Then he will drill a small hole in the bone (the cochlea) and feed the implant into and around the curve of the cochlea.  It will end up coiled, inside, with 26 (hopefully) electrodes then available for transmitting signals via the hearing nerve directly to my brain, bypassing the damaged hair cells that no longer work. 

Once this area has healed, I will use an external processor, worn on my scalp beneath my hair, to filter and process sounds into digital information, which will then be transmitted to the internal implant.  According to the Cochlear America description, The electrical signals from the electrodes stimulate the hearing nerve....[and this] allows the brain to perceive sound. 

I will first be activated on January 13, if all goes according to plan.  I have no idea what I will "hear" at that point.  A few patients understand spoken language right away.  Many others hear nothing but an obnoxious, offensive, overbearing series of noises--squeaks, bangs, screeches, squeals, thuds--that make them want to tear the implant out of their head.  I'll have to wait and see where along this continuum I fall.

What I am wondering about today, however, is what I will hear between Monday and January 13.

A little anxiety added

Yesterday Lee woke up with a sore throat and a very deep voice.  I worried that I'd catch "it"--whatever it was--and that that would postpone my surgery.  The surgeon's nurse assured me that, unless I had a fever, they would probably go ahead with the implant.  So I began washing my hands every few minutes and staying away from my wonderful hubby.  So far, so good.

And the surgery is on schedule for Monday.

Partying

Last night we went to a holiday party for members of two chapters of the Hearing Loss Association of America (HLAA).  There were about 25 or 30 people there, many of them wearing CIs. 

I was surprised by how much of the conversation I could hear without difficulty.  This morning I realized that the house was decorated with a eye toward that goal: the carpeting throughout was very plush; all the windows were draped in soft fabric; the furniture was soft and had lots of pillows; and the walls were full of interesting stuff, all of which minimized the echo.  Even the front door had some fabric art hanging down from below the small window.  All that really did make a difference!  The opposite--a sleek design with hardwood floors surrounded with windows enclosing large open spaces--makes hearing more difficult.

I did find, however, that toward the end of the evening, I was asking for more repeats.  Listening hard is tiring and after a while I tend to lose some of my acuity.  I imagine I will find this even more true once I am trying to understand through my CI.

I was especially struck by two of the guests who were wearing CIs.  One still had great difficulty understanding language.  That was obvious.  The other one told me that the audiologist at HUP had told him five years ago that he had the highest scores on word recognition immediately after being activated of all the patients she had ever worked with.  Now that's something to aim for!  Wouldn't it be wonderful to get into competition with him?  (I'm not expecting it, but it would be nice.)

The thing I must remember, however, is that we are all like snowflakes, each one unique (as my friend Maurice likes to say).  So I'll have to wait and see what transpires.

My CI Adventure

This is an attempt to take my friends and family along on my journey toward gaining better understanding of what I "hear" via cochlear implant surgery and to let them see the world as I experience it along the way.

My surgery is set for December 19, one week from today. 

For a bit of background, I began losing hearing about ten years ago.  After hiding my head in the sand for a few years, I started wearing hearing aids.  I went through about four different models, each one helping me somewhat for a while and then becoming pretty useless.  Last spring, with my hearing measuring less than 10 percent in either ear in the range of human voices, I attended a convention of the SayWhatClub and did my first serious exploration of the cochlear implant (CI) world.  Many of the convention attendees were sporting CIs and understanding pretty well with them.  Interacting with them convinced me to pursue the matter further.

So I read about the three companies that manufacture the instruments and researched the reputations of the medical facilities near me that provided this surgery and care.  I debated between going to Johns Hopkins in Baltimore and the Hospital at the University of Pennsylvania (HUP) in Philadelphia, finally deciding to stay closer to home at least in part because of the number of trips I'd have to make to the facility to have my CI "mapped."  I also learned that the two had comparable reputations in this field so I felt that either place would be a good choice.

So I made an appointment at HUP and began the testing process.  The test that threw me the most was sitting in an empty room with only a couple of speakers (not the human kind) and trying to repeat short sentences and two-syllable words.  I failed miserably, which I knew was a good thing in terms of my being approved for a cochlear implant, but I was depressed by it and found myself on the verge of tears.  After all, I had never flunked a test in my life!

Many tests later, with a few wrinkles thrown in, I was scheduled for surgery on December 19.  It is rapidly approaching.

Perhaps you would like to know what life is like now with my very little hearing and my very strong hearing aids.  I do pretty well, one on one, and can carry on a fairly normal conversation that way.  I might, however, think you were describing your brother when you were talking about your mother or I might gather that you are crazy about a book you just read, but I might get the wrong title.  If we're riding in a car together and I am in the front seat while you are in the back, or visa versa, I could not understand what you were saying unless I turned my head so I could watch your lips.  If I am driving, we'd need to have a silent trip if we wanted to stay alive (with my eyes on the road).  If you are driving, the same would be true--but with your eyes on the road and your mouth facing forward so I could not read your lips.

In lectures, theater productions, musicals, movies and concerts, I cannot understand the words that come from the stage (unless there are visible captions).  I can hear and appreciate the music, except for the high notes (violin solos often look partly like pantomimes to me and piano notes just click above a certain point).  But I can't understand the lyrics. 

In social situations, at a crowded affair like a wedding, I can understand almost none of what anyone says to me while at group dinners or book club meetings (even with round tables of six or eight) I can get only glimpses of conversations, which I then usually misinterpret (I call that my creative hearing).
As a result, after misunderstanding or interrupting enough times I back out and clam up, rather than say the wrong thing at the wrong time or in the wrong context again, and thus I become isolated, look dumb or boring and feel lonely.  It is not fun, but I do realize there are many worse things in the world.

So that is where I find myself at the moment, at the beginning of this blog.  I will try to keep you informed as I go through the surgery, recovery, mapping, homework, and discovery and let you know how it all feels and seems from the inside out.  It will be a long process.  I will not be "turned on" until January 13, so I will be totally deaf in my CI ear between December 19 and January 13, if all goes well.  What I will hear on January 13 is anybody's guess!  I hope you will find the story interesting and that I find the process successful. (-: