Friday, January 30, 2009

All Fired Up

A lot of changes in a few hours!

From the start of the appointment, it was right down to business. The audiologist, Amy, had a blue and green box about the size of two shoe boxes. It contained the external processor and all its supporting paraphanalia such as batteries, recharger, gadgets for connecting to MP3 players, etc.

(And, of course, literature including an instructional DVD complete with Closed Captions. This is ironic because I've been fretting lately over the fact that our Toshiba DVD player will not pass Closed Caption information to our TV even though the TV is quite capable of displaying Closed Captions. This was my main excuse for buying a new TV. But I digress ... )

Amy then showed us how to attach the processor, how to recharge the batteries correctly, etc. It took some time to get the processor magnet to stick to my head properly. Either I'm thick skinned or there is still some post-operation swelling under the skin. For now, there's an extra strong magnet to ensure that it doesn't fall off. I may have to be careful when walking close to large metal objects.

She fired up the processor and asked me if I could hear anything. At first, I could not so she turned it up a little. Then, sure enough, I could hear something. 'Hear' isn't quite the right word ... it's more a sort of buzz in the head, something like tinnitus. Or perhaps like the sound one hears at the dentist when he drills a little too deeply and hits a nerve.

Weird at first, but within a few minutes it starts to sound a bit more natural. Amy read through some text which I followed on a sheet of paper. No lip-reading allowed! It was about Salem and witches. I could hear all sorts of 's', 'shh' and 'ch' sounds - something I haven't heard in my right ear for some years. This alone was an improvement on any hearing aid I've tried!

Amy then read through a list of basic sounds or phonemes to ensure that I was able to perceive each one. Some I could understand better than others; certainly no difficulty with the 'sh' sound but more difficulty with the lower sounds like 'm', 'b' and vowels. She said that this was really just a starting point and more precise tuning would happen at the session next week by which time my ear/brain would have sorted things out a bit.

By 10:30, we were finished as Amy had another appointment. Barb and I went for coffee at the Sunnybrook Second Cup. This is a 'buzzing' kind of place and I was expecting it to seem very noisy. But I was pleasantly surprised to find that it was not overwhelming at all. I had no difficulty understanding Barb, though I rarely do anyway.

On the bus back to Davisville, I heard a number of interesting sounds:
* a 'ping' when tokens fall into the fare-box
* the hiss of brakes being released
* the stop announcements. I could clearly hear the word 'station' and some street names; others not so easy to make out. (Similarly, the station announcements on the subway)

I dropped in to the bulk food store on the way home to scoop up some oat bran and other things. I was amazed that I could hear the 'swish' sound of the scoop in the bin. I didn't even know it made a sound!!

And at home, I can hear all sorts of things I either haven't heard for a while or have never heard at all:
* the beep of the microwave oven control
* a crunching noise when Barb eats an apple
* the click of the computer mouse button (I always thought clicking and double-clicking was a concept, not a sound!)
* even the scroll-wheel of the mouse has its own sound!

That said, things do NOT yet sound natural in any sense of the word. So far, things sound tinny and mechanical. There's just no bass sound on the cochlear implant side. I've tried listening to a couple of bits of music that I know well - and they sound like they are being produced by a tiny calliope rather than a chamber orchestra. There's little variation in tone or volume.

But it has only been a few hours. I'm told that it will take a lot of time, practice and adaptation before the full potential of the CI can be realized.

So far, I'm feeling encouraged. It's far from perfect but a whole lot better than having no hearing in my right ear.

Wednesday, January 28, 2009

Post-op followup

Back to Sunnybrook early today for a post-op checkup. It's a snowy day now but not much had fallen by the time of the appointment so there was no problem getting there.

The nurse removed the staples from the incision. Mercifully, they have a special tool for this, something like tiny retaining-ring pliers. So it's looking a lot less grotty now:



Dr Chen said it may take 2-3 months before my taste and feeling in the tip of the ear is fully normal. He emphasized the importance of active listening with the cochlear implant - e.g. listening to familiar spoken or music recordings over and over or reading things out loud to improve my voice modulation.

On Friday, I go back to Sunnybrook for activation! Barb will likely come with me. Whatever happens, it would be good for her to understand how it works and what sort of experience I will likely have with the cochlear implant. It will be interesting to see how it goes!

I understand that a few CI recipients find that they are able to comprehend speech almost as soon as the device is turned on. A revelation, in effect. But for most people, there's a learning curve of 3 to 6 months before they are fully functional. And for some unfortunate people, it doesn't work at all and they revert to other means of communication.

Why different people have such different experiences isn't well understood. It seems to have more to do with hearing history and motivation than anything else.

People who have lived a normal hearing life only to suffer sudden deafness seem to do best. Though traumatized by their loss of hearing, they are likely to be highly motivated to adapt to the cochlear implant as they have no 'fallback' means by which to hear. They are unlikely to have developed speech/lip reading skills and it can take years to develop fluency in ASL (american sign language).

Those who have lived for a long period of time with no sound at all seem to find it hardest. Their auditory nerve may have atrophied from lack of stimulation. They may have forgotten how things really sound or what they hear is just a small part of the full sound spectrum of each word or syllable.

You might think that children would have the easiest time adapting to their CI. Curiously, that doesn't seem to be the case. They do not seem to have to depth of experience of sound that older people may have. And, of course, if a child has not learned language during a critical period of early life, he or she may never to ever learn to understand words through a CI.

Wednesday, January 21, 2009

Tiny Pianos

Most of our senses are ‘mapped’. That is, a particular location in a sense organ stimulates a corresponding point in our brain and adjacent sense locations stimulate somewhat adjacent points in the brain. For example: sight, taste, touch.

Hearing is similar in that each location in the cochlea maps to a particular frequency or pitch. The base of the cochlea is mapped to low frequencies and the tip or apex maps to high frequencies. Something like a tiny piano keyboard rolled up into the size of a pea. This ‘piano’ normally has about 1,500 different ‘keys’.

The cochlear implant, by comparison, has a mere 16 keys. Ideally, those 16 keys would take the place of the normal 1,500 keys. In fact, that isn’t going to happen. The external electronics will be programmed to squeeze the incoming sounds into 16 bands. My brain will have to figure the rest out. It won’t be perfect but, chances are, it will be better than what I have today.

In addition, the electronics will also have to be programmed to accept sounds at all sorts of intensities and convert them in to electrical impulses that are somewhere between barely detectable and fuse-blowingly loud. Again, my mind will have to figure out just what that means. Is that noise a mosquito or a helicopter?

This learning process will begin at the ‘turn on’ date which is next Friday (Jan 30th) and it will continue for a while. I have appointments for mapping adjustments at Sunnybrook all the way until January 2011!

I’m told that one of the best ways to train the brain to make sense of the cochlea implant signals is to listen to an audio book while following the corresponding text on paper or on a computer screen. There’s a lot of stuff floating around on the web that can help and I’ve been checking out some of this today. For example, Project Gutenberg has loads of stuff. The nice thing about some of this is that the voices sound fairly normal (well, to me at any rate). Some commercial audio books I’ve listened to in the past are overly theatrical and have music added into the background. That’s OK for some but it’s not what I want for this purpose.

Monday, January 19, 2009

Hospital Then and Now

On being admitted to Sunnybrook Hospital prior to surgery, I was asked by the nurse if I had ever had an operation before. I told her that I had an operation at the age of 7 or 8. She replied that things had not changed much. But some things have changed!

Then (1963)
Hospital: Royal Ear Hospital in London UK. Old, probably Victorian. Inside covered with white tile and outside with red brick. Think “Carry On, Doc”.

Length of stay: one week for what seems a very simple procedure(*)

Nurses: all very young with blue serge dresses and starched white aprons. Also wore cuffs, broad black belts and little hats. Nurses do just about everything. Bossed by the Matron who was a sort of General Patton in nursing outfit. Everyone deferred to Matron except (possibly) the surgeon.

Ward: one big ward for all the kids. Lots of fun: played board games with each other and gave rides on bedcarts when the nurses were not looking. Big, tall windows with drapes.

Food: awful. Worse than school dinners. We had to eat every last morsel. I still gag at the smell of boiled turnips.

Injections: lots. Seemed to be an injection at least once per day for this and that; usually in the buttocks. I think this is how the nurses got their revenge for bad behaviour.

Now (2009)

Hospital: Sunnybrook. Mostly new (post 1980). Sprawls over a leafy green campus on the edge of the Don Valley.

Length of stay: 24 hours for something that in 1963 would have been considered science fiction.

Nurses: on average, older and more experienced. Nothing very uniform about them either. They are much more specialized; they do nursing, not bed-making, cleaning, etc.

Ward: I was in the general ward. No windows. Each bed had its own dimmable light.

Food: wasn’t there long enough to have any substantial food so I can’t comment.

Injections: only one and that was to install a ‘drip’. Everything else goes in with the drip mechanism. Painless but makes it harder to run away.

(*) My understanding (only pieced together in retrospect and I may be totally wrong) is that the blood flow in the inner ear was supposed to be improved by blocking sympathetic nerves in the stellate(?) ganglion. I do remember that the side effect was supposed to be droopy eyelids and my Mum was not too keen on this. It was tried temporarily using an anaesthetic. As that didn't seem to help, the more permanent surgery wasn't attempted.

Sunday, January 18, 2009

Snowed In

I've been home now for a couple of days and so far so good. I'm taking the prescribed antibiotics and that's probably making me a little sluggish. I don't remember ever having to take antibiotics before. If I have, it was a long time ago, perhaps 25 to 30 years!

I did a little research on this particular antibiotic (Cephalex). It was first isolated from a sewer in Sardinia in 1948 by Italian scientist for Guiseppe Brotzu. Where would we be without sewage?

My balance is still off but is improving. It's worst in the dark or if I've been lying down for a while. Walking around seems to help ... likely, the eyes and touch convince the brain that it should listen to them and ignore that traumatized vestibular system.

Taste is still affected but it hasn't become any worse since yesterday.

Barb went skiing today but is just back. Monica came by this afternoon for a cuppa tea and kindly gave me a ride to the video store and back.

Friday, January 16, 2009

Back Home

I’m back at home now. The whole thing took 24 hours almost to the minute.

The staff at Sunnybrook Hospital were all great, especially the night-shift nurse, Janet Scott. And, of course, the surgical team but I have to admit I saw little of them and heard even less.

I’m feeling pretty good now. There’s not much pain and what pain I have is probably less than the typical earache. I’m wearing my hearing aid in my left ear but nothing in my right ear (the implanted ear). I can understand Barb fairly well with my left ear plus lip-reading but it takes a bit more concentration than before and I have to cock my left ear towards her.

I do have some ‘side effects’, none of them unexpected. I’m told that these should go away in a few days:
  • My balance is off, especially if I move my head up and down. Left to right is not so bad. I’ll have to be very careful going up and down stairs.
  • There’s some taste disturbance. For example, a tangerine tastes like a tangerine on the left side of my mouth but like piece of rag on the right side.
  • I have some tinnitus (noises) in my right ear. I normally have some tinnitus in both ears and it comes and goes. It’s usually peeps, clicks and whistling noises. But this is a new noise: a deep pitched hum that comes and goes.
After getting home, I had a shave. My electric shaver is very loud so I usually turn off my hearing aids while shaving. Usually I can still just hear the shaver when I shave close to each ear. Not today! The right ear doesn’t hear a thing. So now I’m completely and totally deaf in my right ear and it will stay that way until January 30th when the external processor is connected and turned on. A bit scary.

Some Photos





A 'before' picture. Short haircut as I won't be able to wash it again for a week or so.




The assistant surgeon (sorry, I didn't get his name) drew some things on me to make sure they don't do the wrong ear in their excitement to get going. Ironically, this is the electronic symbol for amplifier.




OK, this is a bit gross. But it will start to look better soon. The staples will come out on Jan 28th. The yellow stuff is some sort of disinfectant. The electronics are somewhere under the shiny bit. I can't even feel a bump or anything so far. There may be a small bump after the swelling goes down.




My brain huuurts!

Thursday, January 15, 2009

Heading down recovery road

I left Steve a little over an hour ago with 2 servings of of Jello and a book he has been reading - "Singled Out: How Two Million Women Survived Without Men After the First World War." Both promising signs of taking small pleasures where and when you can.

He looks good despite the intimidating bandages. Tylenol 3 is handling the pain and if tonight's X ray and the surgeon's inspection tomorrow morning go well, we will be home before noon.

Barb

So far so good

Surgery started later than expected, but everything seems to be in place.



I left Steve in the O.R. surrounded by various specialists (all gorgeous). Each one made a point of connecting with him before have gave up his hearing aids and glasses. Sandra and Bruce's friend Shirley also came by to wish him well. It's reassuring to have all this support at the hospital and from all of you blog readers who have called and emailed your best wishes.

I'll post again shortly,

Barb

Going In

Thanks to everybody for the e-mails, phone messages and blog comments. They are very encouraging!

The surgery is scheduled for 13:00 (1 pm). We have to check in at 11:00. Not as early as I expected and a good thing as I'm not a morning person.

No messing with the subway today! The traffic at that time of day should be light so we might as well drive anyway. I hope the car will start as it's bit nippy here (a mere -16C ... it's -40C in Algonquin Park and -36C in Huntsville and Gravenhurst).

Barb will post something here later today to let everyone know how things have gone.

If all goes well, I should be back home sometime tomorrow.

Wednesday, January 14, 2009

Feelings

Matthew asks how I'm feeling. Something like this:
Seriously, sometimes I still wonder if I really need this. Perhaps I'm not deaf enough! And I have to remind myself that, even though it's another hole in the head, it's considered to be relatively minor surgery. I gather it's not nearly as traumatic as, say, an appendectomy and certainly nothing close to brain surgery.

Sometime this afternoon, Sunnybrook will call Barb and give her the time of the operation and the time that we need to be there tomorrow.

Meanwhile, I seem to have dodged a bullet of sorts and have avoided getting a head cold that is afflicting a lot of people right now.

Monday, January 12, 2009

Decisions, decisions

Leading up to the decision to have a cochlear implant (CI) installed, I did quite a lot of research using the web, various newsgroups and some books. Many recipients have created their own blogs or web pages describing their personal stories. For example, I found this one especially useful as it has lots of pointers to other blogs and resources:
Chronicles of a Bionic Woman

One concern was that this was new, untried technology. I was surprised to find that CI’s have been around for about 30 years. In that time, some 150,000 people have been implanted worldwide. The device failure rate for the internal device is low and continues to fall. So I will hardly be a guinea-pig.

Speaking of guinea pigs, a second concern was that I would potentially lose any residual hearing in the implanted ear. This would mean that I would be no be able to take advantage of any future medical advances such as gene therapy. Reading up on this, it was apparent that such breakthroughs, while promising, are a long way off and to date are only at the guinea pig or lab-rat stage. It seems improbable that this technology will become available in my lifetime. Also, the cause of my hearing loss is unknown and it’s likely that this type of intervention would only be useful for very specific types of hearing losses with a well-understood genetic basis.

I was also concerned about obsolescence. The life-cycle for hearing aids is assumed to be about five years; in fact, manufacturers will not repair aids that are more than ten years old because parts can not longer be obtained. A hearing aid can easily be replaced with a newer model but this would not be an option for a device embedded in my skull. I was reassured to find that most of the development is happening with the external processors and, especially, with the software ‘maps’ that the processor uses to translate sounds into electrical signals for the implant. Many of the early implantees are still using their original implants but with upgraded external hardware or software. If I were to get 30 years of use out of an implant, I will be well into my 80’s. That would be pretty good run!

And I was mystified about the actual surgery process. The cochlea is very small: about the size of a pea. Within that space there are three separate channels or cavities all coiled up together. If it were uncoiled, it would be about 4cm long. How was a surgeon going to feed 24 electrodes into that one of those channels? I’m still not entirely sure how this will work but I was somewhat reassured after watching this video of the operation:
Cochlear surgery
(don’t watch this during dinner!)

Friday, January 9, 2009

A bit more history

In my late 40's, I found that I was becoming increasingly reliant on lip-reading. I could no longer understand radio. TV shows and movies were becoming impossible to understand unless they had 'talking heads' or captions. And in the past year, I've had to stop using the telephone for anything but brief and predictable conversations with people I know.

When I realized that I could no longer hear high-pitched sounds such as birds, smoke alarms and the 'beep' of the microwave telling me the porridge was done ... it was time for action!

My audiologist at The Toronto Hospital re-tested my hearing and found that it had taken a measurable dive when compared to previous tests. I was now at 110db (left ear) and 115db (right ear) for 2000Hz which is around the critical frequency for a lot of consonant sounds ("ch", "sh"). Other frequencies were not much better. That meant I was considered to be profoundly deaf.

The end result was a referral to the Cochlear Implant centre at Sunnybrook Hospital. There was a bit of a wait for the initial appointment but after that everything seemed to happen quite quickly. Those horror stories you sometimes read about ridiculously long waits under the Ontario Health Care system don't seem to have affected our family.

The first appointment was with an specialized audiologist. She put me through a number of tests, some of which were new to me and some that were more detailed versions of the initial hearing test at TTH. At the end of it, she confirmed that my hearing level was within their guidelines for cochlear implant candidacy. She also explained that it was likely I would do well with an implant because my speech was fairly normal and I had lived in the 'hearing world' for all my life with the assistance of hearing aids - i.e. I had not been through a long period of sound deprivation. But she warned me that the surgery, if it happened, would just be a starting point and that it would likely take a lot of time and effort to become fully effective with the device.

More tests followed at later appointments including a CT scan, a balance test and an interview with the surgeon. The tests evidently showed no abnormalities that would preclude a cochlear implant. Dr Chen explained the surgical process in detail and what we could expect afterwards. He also said that, while it was possible for some residual hearing to be retained, the likelihood was that much or all of it would be destroyed during the implantation process. A one way trip, if you like.

After he left to see another patient, we realized that we had not talked about which ear would be implanted! Someone fetched the Dr again and he said that it likely made little difference in the end since both ears were similar in degree of hearing loss. My preference was to have the right ear implanted since my left ear seems to have slightly more functional hearing and thus a bit less to lose.

Having had some time to think about this during the initial wait for the appointment, my mind was already made up. There seemed to be little to lose and, possibly, a lot to gain. After a brief consultation with Barb, we booked a date (2009-01-15) and signed the consent form.


Thursday, January 8, 2009

A bit of history

As far as anyone can tell, I was born deaf. When a newborn, I had no reaction to soft sounds and would jump at my parents' approach or at a car door closing because I had not heard any warning sounds. They say that none of their other 5 children showed this behaviour.

At about the age of eighteen months, my father noticed that I didn’t come when called while in the garden. At this point they took me to see a doctor; the doctor was skeptical of deafness and thought it might be temporary due to ear infections, etc.

I evidently learned to hear and speak without any noticeable developmental delay. My brother Francis would talk to me very loudly and and my mother would get cross with him. Only in retrospect did she realize that he was doing this because I was deaf.

I started school (4yrs 9 months)without a hearing aid. I was placed at the back of the classroom in Grade 1 on the basis that I was one of the taller kids in the class. I was seated under the letter “Y” for Yacht. I thought this was an interesting word. I don’t think I learned much else in first grade.

Late that year, I was fitted with a hearing aid in the right ear and apparently got along well with it. This was a National Health (Medresco) body aid that ran on one AA cell. It was very robust and often fell on a hard floor surface without any apparent damage.

Later on, in my teen years, I was fitted with a behind-the-ear (BTE) aid. I also went bilateral. I did quite well in High School and CEGEP. University was more difficult and I found it hard to follow lectures in large lecture halls where I could not rely on lipreading.

During my 20's and 30's my hearing ability stayed about the same with only a very slight decline. For most of this time, I was able to use the phone effectively and I have to say that I found very restrictions in day to day living. The only situations where I found my hearing impairment to be a real problem were noisy ones (loud parties, traffic noise) and watery ones (swimming, boating).


Introduction

I'm setting up this blog so friends and relatives can find out how I'm progressing with my cochlear implant.

On Monday (Jan 5th), we went to Sunnybrook hospital for the pre-op assessment. No hitches there. A nurse took my blood pressure and said that it's a bit high. Nothing new there; I think it starts to go up whenever I get close to doctors and hospitals. The anesthetist was not concerned by my BP. He was a bit more interested in the family history of heart problems but said that my ECG looked fine so it was unlikely to be a problem.

I'll have to be careful not to pick up a cold or other infection before the surgery date. That could be challenging as a lot of people at work have something or other and it's hard to avoid snifflers, etc, on the subway. I'll just have to be fastidious about washing my hands and not touching my face.

Today, Thursday (Jan 8th) is one week until surgery. I'm starting to get a bit nervous! Not so much from fear but more from the realization that this is going to be a big change in many respects.

Why "SevenEars"? Well, mostly because the names "FourEars" and "SixEars" were already taken. But then it occurred to me that I actually own seven hearing aids of various states of repair. And each "Seven Years" seems to represent a phase in ones life so maybe it's appropos of that too.

Googling the term "Seven Ears", finds that it appears in the Bible and in script of the "Joseph and the Technicolour Dreamcoat". Different kind of ears; metaphorical perhaps.