Guy
I have heard that you are undecided about whether to undergo a cochlear implant operation or not and, having had such an operation myself I thought I should tell you a bit about what to expect and, as a "veteran" of the procedure, what I would advise. The device has certainly made huge changes in my life - all for the better.
A little terminology and a quick diversion into the mechanics of sound here, may help you to understand some of what follows. Forgive me if this is old hat to you. What follows is just as I understand it, thanks to explanations given to me by kind and patient specialists I have pummeled with questions over the years! It is not necessarily correct. I was originally told and led to believe for many years that I had "nerve" deafness. I now believe that hearing specialists are changing their terminology because what usually fails, in most cases of deafness, apart from physical malformation or damage to the ear drum or bones, is the tiny hairs inside the cochlea itself and most people still have perfectly functioning auditory nerves but just no means of getting the sound to those nerves (I think one auditory nerve runs from each cochlea to the brain). Sound is a physical phenomena, sound generates movement in the air, the moving airwaves are caught by the outer ear and directed to ones ear drum, where they move the ear drum. The ear drum moves the little bones in the middle ear (the hammer, anvil and stirrup) which amplify the movement and transmit it, to move the "window" on the cochlea, in the inner ear. The window vibrates, causing movement in the fluid in the cochlea and this causes microscopic hairs within the cochlea to move. All of this has been physical movement up to now and here is where a miracle takes place because the physical movement of the hairs in the cochlea is converted to electrical energy, which is transmitted via the auditory nerve to the brain. As far as I know, medical science has still not quite worked out how this conversion from physical to electrical energy takes place BUT it does take place and that is (in my layman's terminology) how a normal hearing person receives the perception of sound.
I am 48 years of age and come from Zimbabwe, where I was born and lived all my life until four months ago, when I landed in Canada as a new immigrant. I was born with normal hearing and was very fortunate, in that I learnt to speak before I started to lose my hearing.
At the age of about four years I had measles and mumps, simultaneously and doctors believe this is what started the decline in my hearing, although this was not picked up for many years. My father was a keen hunter and many weekends would find my brother and I on the back of the truck, accompanying my father as he hunted. In those days, of course, acoustic trauma and the damage it could cause was not common knowledge, as it is today and my father was totally unaware that our hearing may have been getting damaged.
By the age of 11 my school work was suffering and I was tested and diagnosed has having suffered some hearing loss. No more hunting!
My hearing remained static for some years and I managed without a hearing aid until shortly after I started work at 18. By then I was struggling and visited a hearing aid supplier who fitted me with a "cross" aid, having the microphone on one side, a wire around the back of my neck and the output on the other side of my head. The technical necessity for this is not really relevant here. Suffice to say that I did receive some benefit from the aid but definitely limited benefit. I wore various aids over the next four years, with different degrees of success but at about 23 I gave up wearing aids because they were just not helping very much. I could still use the telephone but was rather unreliable at receiving information that way. I could lip read quite well and relied to a very large extent upon lip-reading to glean most of my information. Over the next few years my hearing deteriorated even further and off I went back to my friendly hearing aid man, seeking help.
He did an audiometry test on me and looking at my graph he looked quite uncomfortable, prompting me to ask him what the problem was (we had become quite friendly over the years when he supplied and serviced my aids). "Well, Guy, I don't quite know how to tell you this... but let me put it this way - if a blind man goes to the optician requesting glasses, the optician has to say, sorry, I can't help you" He advised me that my hearing loss was such that no hearing aid made could be of any assistance. He said that, within certain frequencies and notably within a lot of the speech range of hearing, even if he could make the sound so loud that a person across the road could hear it, I would still not be able to hear it. He said that he felt my lip-reading and "mental agility" were extremely good and after talking to me but before he did the test, he did not realize just how deaf I was. I wanted to know what he meant by "mental agility" and asked him, "do you mean I guess a lot?" After a pause, he admitted that was pretty close to it! Well, I am sure you know that lip-reading is really a pretty lousy way to get sound input, especially if there is more than one person you are trying to talk with.
Anyhow, lip-reading was all I had and I managed with that for many years, although it was quite a strain, especially as I earned my living in Real Estate. Over the next 10 years my hearing continued to deteriorate until I could not hear a dog fight from a few meters away - I had five dogs at the time and one day something triggered a fight where they all got stuck into each other and I, literally just a few meters away and not facing the dogs, was unaware of the fight until someone else nearby came running to try and separate them.
It was, by then, many years since I had heard a door bell or a telephone ring, etc. My loss was in the higher frequency range and was almost total for the frequencies that I could not hear. I did still have a little bit of residual hearing left for very low frequencies but that was all.
In about mid 1995 I was getting married and shortly before the wedding I took my fiancé, Wendy, with me to visit an Ear, Nose & Throat specialist in Johannesburg, South Africa. I wanted Wendy to hear from him whether there was any hope, because I did not want her to think that I just did not try to overcome the problem. I discussed the problem with the Specialist & asked if there had been any developments with hearing devices that could help me. We had a bit of a discussion & then he did an audio test, after which, he looked at the result & said, "you know this is about as close to totally deaf as makes no difference, you must lip-read pretty well because I did not realize just how deaf you are until I see these results." Again, a nice compliment but I still hated not being able to accumulate audio information more reliably. I asked him if a "bionic ear" as I had read about in Readers Digest some years earlier was not the answer and he took the time to explain why he felt, in my case, it was not an option.
At the end of 1997 I returned to visit the same specialist and took my previous audio results with me. We had a brief chat and he said, "you know, I don't want to get your hopes up but you could probably benefit from a cochlea implant operation. If you are interested, I could put you in touch with a team who do the tests and, if successful, the operation." I was amazed and reminded him that about two and a half years before, in his consulting room, he had told me that such operation was not for me.
He explained that he felt the devices had come a long way in a short time and there may be some hope.
I have made much, above, of my lip-reading ability. Not to boast but to emphasize that, despite the fact I probably had above average lip-reading ability, I have received tremendous benefit from my cochlea implant device.
So, despite the fact that we lived about a ten hour drive away from Johannesburg, Wendy and I started booking appointments and going through the screening and testing required before surgery would be considered.
The problems, raising points against, were:
1. At 45 years of age, the audiologists felt that I was probably a bit too old.
2. I had been deaf for too long and so may not benefit from the procedure because I might not be able to learn to interpret sounds into speech after being fitted with the device.
3. It was so expensive that, without some strong likelihood of success, they were reluctant to recommend me for the procedure. (I refer to it as a procedure because it is very much more involved than just an operation.)
The points in favor were:
1. Because of my lip-reading ability, the audiologists felt that I may be able to get some benefit out of it all.
2. I was generally fit and so the surgery was unlikely to present any real problem.
I was very willing and keen to go, so the tests continued. I can tell you that this involved many trips from Bulawayo, Zimbabwe, down to Johannesburg to visit the "team" at the University of the Witwatersrand or "Wits" as it is known (pronounced Vits). The audiological tests were many and extensive.
Then I had to meet with the surgeon at Linksfield Park Clinic in Johannesburg and he had the final say, after discussing all the pro's and con's with my audiologist. Once she and I had persuaded him that I wanted the Op, even if it gave me limited benefit, he conducted a few more tests, including the one I disliked the most!! I forget what it was called but it involved inserting a needle through my ear drum until it touched the small window on the inner ear. Carried inside the needle was a minute electrode and when this was in position he passed current through the electrode and sought my response. I HEARD a beep! That settled it. The beep proved that my auditory nerve was still alive and functioning, so, I was a possible candidate for the procedure. This test was really more unpleasant in mind and imagination than reality.
At this point I must tell you that all the medical and audiological personnel that I dealt with were superb. Wendy and I found all of them to be very kind and caring folk, who really went out of their way to ensure that I fully understood all the risks, as well as the possible benefits. They also, I believe, downplayed the possible benefits, to ensure that I did not agree to have the operation under any kind of false hopes.
Basically, I could have elected for either of two types of implant, in Johannesburg, at that time. One from Australia or a European one from a Company called MED-EL with headquarters in Austria. I went with the MED-EL option and have not regretted it.
Surgery was duly scheduled and, once more, we packed the car and off to Johannesburg we went. Surgery was likely to be five hours, we were told and Wendy, who is a very nervous person, was pretty frightened by the whole prospect of me being under the knife! My surgeon was so kind as to telephone Wendy half way through the operation, on his cell phone, to assure her that everything was going fine and she had nothing to worry about.
The operation was not exactly a bundle of fun but also not that bad. I was admitted to the hospital a few hours before the op, had the operation, lasting nearly five hours. This is not as bad as it sounds, just very exacting work, I think, plus my surgeon likes to have his patients X-rayed part of the way through the Op, so that he can be assured that the electrodes are going where he wants them inside the cochlea, all this helps to prolong the process. I only recall feeling unbelievably cold when I came around and had a fairly uncomfortable night in the hospital. Then the day after the Op I was discharged and we stayed a week with friends in Johannesburg, to allow my surgeon to check on my progress and remove the stitches at the end of the week. The operation site was behind my right ear and involved quite a long cut. I recall my appendicitis Op being more painful & uncomfortable, in my 20's - than the cochlea implant Op was in my mid 40's. I think that, although the cochlea cut is longer than the appendix one, it is in a place where there is no body movement & that all helps to minimize discomfort during the recovery period.
After that week we returned to Zimbabwe to let the site heal well before returning to be "switched on".
A diversion into more mechanics:
The Cochlea implant device consists of the implant itself, which is about 30 x 20 x 4 millimeters and has two silicone "tails" coming out of it. It also has electric circuitry in it and a magnet, which aids in holding the external component in the right place, in due course. One of these tails holds a single electrode (called the reference electrode) and the other holds twelve minute electrodes, all in the tip of the tail. These "tails" are about 70 to 100 millimeters long and probably about one millimeter or less in diameter (all these measurements are from my memory, so may not be that accurate). There is no battery in the implant device and it should last for life. The manufacturers keep enhancing the outside parts of the device but always in such a way that the new outer device is still used with the same implant.
The external components comprise:
1. A microphone and preamplifier, which pick up the sounds and convey them to the speech processor. The Mic. has a sensitivity switch which is useful in adjusting for different environments, with background noise, etc.
2. The speech processor is a mini computer which is programmed exactly for the individual and only after the implanted device is securely in place and he/she has healed from the Op. This processor sends instructions to the transmitter, as to how much to stimulate each electrode and when.
3. The transmitter is about 30 mm in diameter, 5 mm thick and has circuitry and a magnet in it. This sits on the outside of the head, directly over the implant and the two magnets (one inside the head, one outside) keep the implant and the transmitter aligned. I fail to understand the technology of how the current is transferred from the outside device to the inside, because there is no physical contact whatsoever and no battery inside the implant.
The outside device is only placed onto site when one wishes to hear and is removed for bathing, sleeping, etc. Initially I had a processor worn in a pouch on my belt, with wires from the processor to the Mic. and from the Mic. to the transmitter, which was run by two rechargeable 1.5 volt batteries. How such a tiny amount of current can run the "computer", which sends instructions to the transmitter, which then generates current, across the skin, is all too much for a simple pen pusher like me to understand but it happens. I understand that each of the twelve electrodes is stimulated up to 18 000 times each, per second. I now have a Behind The Ear processor, etc. (BTE) and the whole gadget, complete with battery pack rests on the back of my ear, just a bit larger than the older type conventional hearing aids. The transmitter sits on the head a few millimeters behind the BTE unit.
The cochlea BTE is a lot more battery hungry than the conventional aids and my device uses three of the larger "button" batteries of the Zinc Air type used by most normal hearing aids (size 675). The difference being that a conventional aid user consumes a battery every few weeks, whilst I use three batteries at a time and they generally only last about four days at the most. This may sound a very expensive gadget to run but, the batteries can be obtained wholesale and the best I have achieved to date is about 60 cents (US) per battery. Thus, it costs about US$13.50 per month for me to be able to hear and that is INCREDIBLE value!!
Back to my story: During the Op the surgeon makes the major cut and lifts away the muscle before cutting a depression into the mastoid bone behind the ear. I was not aware that I had "muscles" on the head behind the ear but I am assured this is perfectly normal!! Actually, I was told the layer of muscle is about 12 mm (half an inch) thick and the mastoid bone is thick enough that a depression cut into it is not a problem and wouldn't expose my brain underneath, nor leave me particularly weak in that area. The implant is made of ceramics, amongst other things, which apparently are extremely strong and also sufficiently inert to not be rejected by the body's immune system. My surgeon assured me that unless I took a direct hit on the implant site with a baseball bat, or such similar trauma, neither my head nor the implant would be likely to suffer from minor bangs in life. I have water skied and generally got on with life since the Op, all with no ill effects whatsoever.
So, the surgeon cuts his little depression to lay the implant in, then pushes the end of the tail with the twelve electrodes into the cochlea, which is the closest place he can safely put them, where they are in close proximity to the auditory nerve. He then leaves the reference electrode under the muscle, a bit away from the site of the cochlea and stitches the site up again.
Three months recovery and back to the "switch on" which was pretty traumatic but this was purely mental! I was coupled up to a computer, after my audiologist had taken the trouble to assure me that the little box between me and the computer guaranteed I could not get electrocuted, etc., etc., but I have a fertile imagination & so made it worse than it was! Each of the twelve electrodes handles a different frequency and has to be individually programmed, which entails the Audiologist starting to stimulate electrode number one, always with a minimum amount of current and watching the patient carefully for any adverse reaction. My audiologist does this very slowly and cautiously and it was like,
my audiologist, "Can you hear anything?"
Guy, "No"
my audiologist, a few keyboard clicks later (clicks seen, not heard), "Can you hear anything?"
Guy, "No"
my audiologist, a few more clicks later, "Can you hear anything?"
Guy, "No"
And so on. Actually the most frightening part of this was that I began to think the Op must have been a failure and I was not going to hear! Not so. It is just that the Audiologist didn't want to terrify me with a sudden over-stimulation of an electrode, which could be uncomfortable and would be a very loud noise, where one hadn't heard one for a long time. Anyhow, eventually:
Guy (just about sweating with concentration, despite my audiologist's attempts to get me to relax!) "Hey, I can hear something but only just, it is very faint."
Audiologist, (totally relaxed) "OK, great, that's what is supposed to happen."
After a bit more playing around to establish the "Threshold" of electrode #1, my audiologist then continued to stimulate the electrode, getting louder and louder until I said, "enough, that's getting uncomfortably loud", she then played around a bit at the Maximum Comfort Level until she found the level which I felt was loud but it was not uncomfortably so.
Onto electrode #2 and repeat the whole process, which by now is not so nerve wracking. Electrode #1 handles the lower tone sounds, going up the scale to #12 which handles the very highest pitched sounds.
The whole idea of this process is that each electrode has to have a Threshold and a Maximum Comfort Level. I think the electrodes get into different positions with different people, the thickness of the cochlea wall, the closeness of the auditory nerve to the electrodes, the condition of the auditory nerve, etc., must all make a difference as to how much "stimulation" each electrode must get to serve its purpose. The lower level is needed so that the computer gives enough stimulation that you can actually hear something and the upper level is where the Cochlea Implant device is, in my opinion, so very much nicer than the old hearing aids I used to wear. The maximum Comfort Level ensures that, no matter how loud the actual sound, the Implant Device wearer only gets it at a reasonable, not a painful level. With the older aids, they just magnified sound, so that what I could hear and what I couldn't was equally magnified and I found that the sounds I could normally hear became so loud that they all but drowned out the amplified sounds that I couldn't normally hear. I believe this has, to some extent been overcome with digitally programmable aids but my remembrance of hearing aids is not a very fond memory!
Prior to having the Op, I was told that the sensation I would receive would probably not resemble sound as I was used to hearing it and that I would have to learn to listen all over again. From day one, however, sound I get from the device is exactly as I remember sound to be. At first the sound quality was poor.
When I was a boarding school, in a rural area of Zimbabwe (then Rhodesia) far away from the urban centers, I had a cheap transistor radio and the sound I first got from my new device reminded me of the sound I used to get through the cheap radio, far away from a good transmitting station. However, the sound quality from the cochlea implant device improves tremendously with time!
When I first started to listen with the device I started to use the telephone again and I could not readily distinguish between a man and a woman on the telephone. Now I can usually tell the difference and can, sometimes, identify the caller by recognizing their voice. I now use a cell phone fairly regularly. One make of cell phone, I find, gives me an interference problem and, because the speaker outlet on the 'phone is such a tiny area, with just a few small holes, it is difficult to match the speaker to my Mic. A different type of cell phone has a little cup around the speaker output and has many holes, this is the phone I use and, so long as there is not too much background noise, I can manage pretty well with it.
Because there is only one input of sound to me, with the device, I have no sense of direction. If I am trying to locate a continuous sound I can turn until the sound seems loudest and locate the general direction that way but a voice, calling from an unknown direction is almost impossible to locate.
How has the device changed my life:
1. Zimbabwe is a political and economic disaster and I really felt the need to move. Without some useful hearing I certainly would not have had the courage to try & start a new life in a different country half way around the world from where I was.
2. I can look back now and admit that I was becoming a bit of a recluse. Because of the difficulty of communicating, especially in social environments with more than a couple of people, it was just so difficult to keep up, that I often did not try or avoided such gatherings because they used to leave me feeling inadequate. This was not fair on my wife and I sure did miss out on a lot.
3. I can now use the telephone again and you cannot imagine how just this, seemingly small thing, has made such a HUGE difference to my life. I can make my own appointments, get instructions over the telephone to repair my computer or load a program correctly, let Wendy know when I am delayed and will be late home, or ..........
4. I imagine it is because I was deaf for so long, that I still tend to rely on lip-reading to some extent but I do not HAVE to look intently at a persons lips the whole time they are talking. If someone gives me an address or telephone number in reasonably quiet surroundings, I can write it down whilst they are speaking.
5. I can hear warning beeps on things like elevator cars and Automatic Bank Teller Machines. I cant tell you how often I missed an elevator car, because I was reading or something & a car arrived behind me but I didn't hear the beep.
My hearing is not perfect, I do not really appreciate music but can quite enjoy listening to some types, what really surprised me is that a violin sounds good to me. From what I recall with a conventional hearing aid - a violin was one of the worst screeches!
No, my hearing is not perfect but it is USEFUL hearing and I can tell you that I am ever so grateful to the manufacturers, the Surgeon and Audiologists who made this all possible, for me to have the amount of hearing I do now have.
Would I recommend that you have the Op? ABSOLUTELY, YES! (If you are able to have it and, I hope I don't falsely raise your hopes - not everyone can have the Op but I believe everyone should find out if they can.)
I would advise that you select your specialists and surgeon with care. Ask to speak with at least two or three patients who have had the Op, by that Surgeon, ask the Surgeon how many failures he has had and what went wrong.
Let the surgeon and the Audiologists explain to you the possible problems and failures but don't be put off lightly.
It is a commitment to hard work on your part. Learning to interpret sounds is an ongoing exercise and quite hard work but, oh so rewarding. Just ask my wife or any cochlea implant patient or spouse, we'll tell you to simply go for it, we strongly believe it will be well worth your effort and expense.
Whilst I say that learning is hard work, it is far easier than the effort I used to put into lip-reading!
I sincerely hope you will pursue the matter.
Guy P.
February 14, 2001
A little terminology and a quick diversion into the mechanics of sound here, may help you to understand some of what follows. Forgive me if this is old hat to you. What follows is just as I understand it, thanks to explanations given to me by kind and patient specialists I have pummeled with questions over the years! It is not necessarily correct. I was originally told and led to believe for many years that I had "nerve" deafness. I now believe that hearing specialists are changing their terminology because what usually fails, in most cases of deafness, apart from physical malformation or damage to the ear drum or bones, is the tiny hairs inside the cochlea itself and most people still have perfectly functioning auditory nerves but just no means of getting the sound to those nerves (I think one auditory nerve runs from each cochlea to the brain). Sound is a physical phenomena, sound generates movement in the air, the moving airwaves are caught by the outer ear and directed to ones ear drum, where they move the ear drum. The ear drum moves the little bones in the middle ear (the hammer, anvil and stirrup) which amplify the movement and transmit it, to move the "window" on the cochlea, in the inner ear. The window vibrates, causing movement in the fluid in the cochlea and this causes microscopic hairs within the cochlea to move. All of this has been physical movement up to now and here is where a miracle takes place because the physical movement of the hairs in the cochlea is converted to electrical energy, which is transmitted via the auditory nerve to the brain. As far as I know, medical science has still not quite worked out how this conversion from physical to electrical energy takes place BUT it does take place and that is (in my layman's terminology) how a normal hearing person receives the perception of sound.
I am 48 years of age and come from Zimbabwe, where I was born and lived all my life until four months ago, when I landed in Canada as a new immigrant. I was born with normal hearing and was very fortunate, in that I learnt to speak before I started to lose my hearing.
At the age of about four years I had measles and mumps, simultaneously and doctors believe this is what started the decline in my hearing, although this was not picked up for many years. My father was a keen hunter and many weekends would find my brother and I on the back of the truck, accompanying my father as he hunted. In those days, of course, acoustic trauma and the damage it could cause was not common knowledge, as it is today and my father was totally unaware that our hearing may have been getting damaged.
By the age of 11 my school work was suffering and I was tested and diagnosed has having suffered some hearing loss. No more hunting!
My hearing remained static for some years and I managed without a hearing aid until shortly after I started work at 18. By then I was struggling and visited a hearing aid supplier who fitted me with a "cross" aid, having the microphone on one side, a wire around the back of my neck and the output on the other side of my head. The technical necessity for this is not really relevant here. Suffice to say that I did receive some benefit from the aid but definitely limited benefit. I wore various aids over the next four years, with different degrees of success but at about 23 I gave up wearing aids because they were just not helping very much. I could still use the telephone but was rather unreliable at receiving information that way. I could lip read quite well and relied to a very large extent upon lip-reading to glean most of my information. Over the next few years my hearing deteriorated even further and off I went back to my friendly hearing aid man, seeking help.
He did an audiometry test on me and looking at my graph he looked quite uncomfortable, prompting me to ask him what the problem was (we had become quite friendly over the years when he supplied and serviced my aids). "Well, Guy, I don't quite know how to tell you this... but let me put it this way - if a blind man goes to the optician requesting glasses, the optician has to say, sorry, I can't help you" He advised me that my hearing loss was such that no hearing aid made could be of any assistance. He said that, within certain frequencies and notably within a lot of the speech range of hearing, even if he could make the sound so loud that a person across the road could hear it, I would still not be able to hear it. He said that he felt my lip-reading and "mental agility" were extremely good and after talking to me but before he did the test, he did not realize just how deaf I was. I wanted to know what he meant by "mental agility" and asked him, "do you mean I guess a lot?" After a pause, he admitted that was pretty close to it! Well, I am sure you know that lip-reading is really a pretty lousy way to get sound input, especially if there is more than one person you are trying to talk with.
Anyhow, lip-reading was all I had and I managed with that for many years, although it was quite a strain, especially as I earned my living in Real Estate. Over the next 10 years my hearing continued to deteriorate until I could not hear a dog fight from a few meters away - I had five dogs at the time and one day something triggered a fight where they all got stuck into each other and I, literally just a few meters away and not facing the dogs, was unaware of the fight until someone else nearby came running to try and separate them.
It was, by then, many years since I had heard a door bell or a telephone ring, etc. My loss was in the higher frequency range and was almost total for the frequencies that I could not hear. I did still have a little bit of residual hearing left for very low frequencies but that was all.
In about mid 1995 I was getting married and shortly before the wedding I took my fiancé, Wendy, with me to visit an Ear, Nose & Throat specialist in Johannesburg, South Africa. I wanted Wendy to hear from him whether there was any hope, because I did not want her to think that I just did not try to overcome the problem. I discussed the problem with the Specialist & asked if there had been any developments with hearing devices that could help me. We had a bit of a discussion & then he did an audio test, after which, he looked at the result & said, "you know this is about as close to totally deaf as makes no difference, you must lip-read pretty well because I did not realize just how deaf you are until I see these results." Again, a nice compliment but I still hated not being able to accumulate audio information more reliably. I asked him if a "bionic ear" as I had read about in Readers Digest some years earlier was not the answer and he took the time to explain why he felt, in my case, it was not an option.
At the end of 1997 I returned to visit the same specialist and took my previous audio results with me. We had a brief chat and he said, "you know, I don't want to get your hopes up but you could probably benefit from a cochlea implant operation. If you are interested, I could put you in touch with a team who do the tests and, if successful, the operation." I was amazed and reminded him that about two and a half years before, in his consulting room, he had told me that such operation was not for me.
He explained that he felt the devices had come a long way in a short time and there may be some hope.
I have made much, above, of my lip-reading ability. Not to boast but to emphasize that, despite the fact I probably had above average lip-reading ability, I have received tremendous benefit from my cochlea implant device.
So, despite the fact that we lived about a ten hour drive away from Johannesburg, Wendy and I started booking appointments and going through the screening and testing required before surgery would be considered.
The problems, raising points against, were:
1. At 45 years of age, the audiologists felt that I was probably a bit too old.
2. I had been deaf for too long and so may not benefit from the procedure because I might not be able to learn to interpret sounds into speech after being fitted with the device.
3. It was so expensive that, without some strong likelihood of success, they were reluctant to recommend me for the procedure. (I refer to it as a procedure because it is very much more involved than just an operation.)
The points in favor were:
1. Because of my lip-reading ability, the audiologists felt that I may be able to get some benefit out of it all.
2. I was generally fit and so the surgery was unlikely to present any real problem.
I was very willing and keen to go, so the tests continued. I can tell you that this involved many trips from Bulawayo, Zimbabwe, down to Johannesburg to visit the "team" at the University of the Witwatersrand or "Wits" as it is known (pronounced Vits). The audiological tests were many and extensive.
Then I had to meet with the surgeon at Linksfield Park Clinic in Johannesburg and he had the final say, after discussing all the pro's and con's with my audiologist. Once she and I had persuaded him that I wanted the Op, even if it gave me limited benefit, he conducted a few more tests, including the one I disliked the most!! I forget what it was called but it involved inserting a needle through my ear drum until it touched the small window on the inner ear. Carried inside the needle was a minute electrode and when this was in position he passed current through the electrode and sought my response. I HEARD a beep! That settled it. The beep proved that my auditory nerve was still alive and functioning, so, I was a possible candidate for the procedure. This test was really more unpleasant in mind and imagination than reality.
At this point I must tell you that all the medical and audiological personnel that I dealt with were superb. Wendy and I found all of them to be very kind and caring folk, who really went out of their way to ensure that I fully understood all the risks, as well as the possible benefits. They also, I believe, downplayed the possible benefits, to ensure that I did not agree to have the operation under any kind of false hopes.
Basically, I could have elected for either of two types of implant, in Johannesburg, at that time. One from Australia or a European one from a Company called MED-EL with headquarters in Austria. I went with the MED-EL option and have not regretted it.
Surgery was duly scheduled and, once more, we packed the car and off to Johannesburg we went. Surgery was likely to be five hours, we were told and Wendy, who is a very nervous person, was pretty frightened by the whole prospect of me being under the knife! My surgeon was so kind as to telephone Wendy half way through the operation, on his cell phone, to assure her that everything was going fine and she had nothing to worry about.
The operation was not exactly a bundle of fun but also not that bad. I was admitted to the hospital a few hours before the op, had the operation, lasting nearly five hours. This is not as bad as it sounds, just very exacting work, I think, plus my surgeon likes to have his patients X-rayed part of the way through the Op, so that he can be assured that the electrodes are going where he wants them inside the cochlea, all this helps to prolong the process. I only recall feeling unbelievably cold when I came around and had a fairly uncomfortable night in the hospital. Then the day after the Op I was discharged and we stayed a week with friends in Johannesburg, to allow my surgeon to check on my progress and remove the stitches at the end of the week. The operation site was behind my right ear and involved quite a long cut. I recall my appendicitis Op being more painful & uncomfortable, in my 20's - than the cochlea implant Op was in my mid 40's. I think that, although the cochlea cut is longer than the appendix one, it is in a place where there is no body movement & that all helps to minimize discomfort during the recovery period.
After that week we returned to Zimbabwe to let the site heal well before returning to be "switched on".
A diversion into more mechanics:
The Cochlea implant device consists of the implant itself, which is about 30 x 20 x 4 millimeters and has two silicone "tails" coming out of it. It also has electric circuitry in it and a magnet, which aids in holding the external component in the right place, in due course. One of these tails holds a single electrode (called the reference electrode) and the other holds twelve minute electrodes, all in the tip of the tail. These "tails" are about 70 to 100 millimeters long and probably about one millimeter or less in diameter (all these measurements are from my memory, so may not be that accurate). There is no battery in the implant device and it should last for life. The manufacturers keep enhancing the outside parts of the device but always in such a way that the new outer device is still used with the same implant.
The external components comprise:
1. A microphone and preamplifier, which pick up the sounds and convey them to the speech processor. The Mic. has a sensitivity switch which is useful in adjusting for different environments, with background noise, etc.
2. The speech processor is a mini computer which is programmed exactly for the individual and only after the implanted device is securely in place and he/she has healed from the Op. This processor sends instructions to the transmitter, as to how much to stimulate each electrode and when.
3. The transmitter is about 30 mm in diameter, 5 mm thick and has circuitry and a magnet in it. This sits on the outside of the head, directly over the implant and the two magnets (one inside the head, one outside) keep the implant and the transmitter aligned. I fail to understand the technology of how the current is transferred from the outside device to the inside, because there is no physical contact whatsoever and no battery inside the implant.
The outside device is only placed onto site when one wishes to hear and is removed for bathing, sleeping, etc. Initially I had a processor worn in a pouch on my belt, with wires from the processor to the Mic. and from the Mic. to the transmitter, which was run by two rechargeable 1.5 volt batteries. How such a tiny amount of current can run the "computer", which sends instructions to the transmitter, which then generates current, across the skin, is all too much for a simple pen pusher like me to understand but it happens. I understand that each of the twelve electrodes is stimulated up to 18 000 times each, per second. I now have a Behind The Ear processor, etc. (BTE) and the whole gadget, complete with battery pack rests on the back of my ear, just a bit larger than the older type conventional hearing aids. The transmitter sits on the head a few millimeters behind the BTE unit.
The cochlea BTE is a lot more battery hungry than the conventional aids and my device uses three of the larger "button" batteries of the Zinc Air type used by most normal hearing aids (size 675). The difference being that a conventional aid user consumes a battery every few weeks, whilst I use three batteries at a time and they generally only last about four days at the most. This may sound a very expensive gadget to run but, the batteries can be obtained wholesale and the best I have achieved to date is about 60 cents (US) per battery. Thus, it costs about US$13.50 per month for me to be able to hear and that is INCREDIBLE value!!
Back to my story: During the Op the surgeon makes the major cut and lifts away the muscle before cutting a depression into the mastoid bone behind the ear. I was not aware that I had "muscles" on the head behind the ear but I am assured this is perfectly normal!! Actually, I was told the layer of muscle is about 12 mm (half an inch) thick and the mastoid bone is thick enough that a depression cut into it is not a problem and wouldn't expose my brain underneath, nor leave me particularly weak in that area. The implant is made of ceramics, amongst other things, which apparently are extremely strong and also sufficiently inert to not be rejected by the body's immune system. My surgeon assured me that unless I took a direct hit on the implant site with a baseball bat, or such similar trauma, neither my head nor the implant would be likely to suffer from minor bangs in life. I have water skied and generally got on with life since the Op, all with no ill effects whatsoever.
So, the surgeon cuts his little depression to lay the implant in, then pushes the end of the tail with the twelve electrodes into the cochlea, which is the closest place he can safely put them, where they are in close proximity to the auditory nerve. He then leaves the reference electrode under the muscle, a bit away from the site of the cochlea and stitches the site up again.
Three months recovery and back to the "switch on" which was pretty traumatic but this was purely mental! I was coupled up to a computer, after my audiologist had taken the trouble to assure me that the little box between me and the computer guaranteed I could not get electrocuted, etc., etc., but I have a fertile imagination & so made it worse than it was! Each of the twelve electrodes handles a different frequency and has to be individually programmed, which entails the Audiologist starting to stimulate electrode number one, always with a minimum amount of current and watching the patient carefully for any adverse reaction. My audiologist does this very slowly and cautiously and it was like,
my audiologist, "Can you hear anything?"
Guy, "No"
my audiologist, a few keyboard clicks later (clicks seen, not heard), "Can you hear anything?"
Guy, "No"
my audiologist, a few more clicks later, "Can you hear anything?"
Guy, "No"
And so on. Actually the most frightening part of this was that I began to think the Op must have been a failure and I was not going to hear! Not so. It is just that the Audiologist didn't want to terrify me with a sudden over-stimulation of an electrode, which could be uncomfortable and would be a very loud noise, where one hadn't heard one for a long time. Anyhow, eventually:
Guy (just about sweating with concentration, despite my audiologist's attempts to get me to relax!) "Hey, I can hear something but only just, it is very faint."
Audiologist, (totally relaxed) "OK, great, that's what is supposed to happen."
After a bit more playing around to establish the "Threshold" of electrode #1, my audiologist then continued to stimulate the electrode, getting louder and louder until I said, "enough, that's getting uncomfortably loud", she then played around a bit at the Maximum Comfort Level until she found the level which I felt was loud but it was not uncomfortably so.
Onto electrode #2 and repeat the whole process, which by now is not so nerve wracking. Electrode #1 handles the lower tone sounds, going up the scale to #12 which handles the very highest pitched sounds.
The whole idea of this process is that each electrode has to have a Threshold and a Maximum Comfort Level. I think the electrodes get into different positions with different people, the thickness of the cochlea wall, the closeness of the auditory nerve to the electrodes, the condition of the auditory nerve, etc., must all make a difference as to how much "stimulation" each electrode must get to serve its purpose. The lower level is needed so that the computer gives enough stimulation that you can actually hear something and the upper level is where the Cochlea Implant device is, in my opinion, so very much nicer than the old hearing aids I used to wear. The maximum Comfort Level ensures that, no matter how loud the actual sound, the Implant Device wearer only gets it at a reasonable, not a painful level. With the older aids, they just magnified sound, so that what I could hear and what I couldn't was equally magnified and I found that the sounds I could normally hear became so loud that they all but drowned out the amplified sounds that I couldn't normally hear. I believe this has, to some extent been overcome with digitally programmable aids but my remembrance of hearing aids is not a very fond memory!
Prior to having the Op, I was told that the sensation I would receive would probably not resemble sound as I was used to hearing it and that I would have to learn to listen all over again. From day one, however, sound I get from the device is exactly as I remember sound to be. At first the sound quality was poor.
When I was a boarding school, in a rural area of Zimbabwe (then Rhodesia) far away from the urban centers, I had a cheap transistor radio and the sound I first got from my new device reminded me of the sound I used to get through the cheap radio, far away from a good transmitting station. However, the sound quality from the cochlea implant device improves tremendously with time!
When I first started to listen with the device I started to use the telephone again and I could not readily distinguish between a man and a woman on the telephone. Now I can usually tell the difference and can, sometimes, identify the caller by recognizing their voice. I now use a cell phone fairly regularly. One make of cell phone, I find, gives me an interference problem and, because the speaker outlet on the 'phone is such a tiny area, with just a few small holes, it is difficult to match the speaker to my Mic. A different type of cell phone has a little cup around the speaker output and has many holes, this is the phone I use and, so long as there is not too much background noise, I can manage pretty well with it.
Because there is only one input of sound to me, with the device, I have no sense of direction. If I am trying to locate a continuous sound I can turn until the sound seems loudest and locate the general direction that way but a voice, calling from an unknown direction is almost impossible to locate.
How has the device changed my life:
1. Zimbabwe is a political and economic disaster and I really felt the need to move. Without some useful hearing I certainly would not have had the courage to try & start a new life in a different country half way around the world from where I was.
2. I can look back now and admit that I was becoming a bit of a recluse. Because of the difficulty of communicating, especially in social environments with more than a couple of people, it was just so difficult to keep up, that I often did not try or avoided such gatherings because they used to leave me feeling inadequate. This was not fair on my wife and I sure did miss out on a lot.
3. I can now use the telephone again and you cannot imagine how just this, seemingly small thing, has made such a HUGE difference to my life. I can make my own appointments, get instructions over the telephone to repair my computer or load a program correctly, let Wendy know when I am delayed and will be late home, or ..........
4. I imagine it is because I was deaf for so long, that I still tend to rely on lip-reading to some extent but I do not HAVE to look intently at a persons lips the whole time they are talking. If someone gives me an address or telephone number in reasonably quiet surroundings, I can write it down whilst they are speaking.
5. I can hear warning beeps on things like elevator cars and Automatic Bank Teller Machines. I cant tell you how often I missed an elevator car, because I was reading or something & a car arrived behind me but I didn't hear the beep.
My hearing is not perfect, I do not really appreciate music but can quite enjoy listening to some types, what really surprised me is that a violin sounds good to me. From what I recall with a conventional hearing aid - a violin was one of the worst screeches!
No, my hearing is not perfect but it is USEFUL hearing and I can tell you that I am ever so grateful to the manufacturers, the Surgeon and Audiologists who made this all possible, for me to have the amount of hearing I do now have.
Would I recommend that you have the Op? ABSOLUTELY, YES! (If you are able to have it and, I hope I don't falsely raise your hopes - not everyone can have the Op but I believe everyone should find out if they can.)
I would advise that you select your specialists and surgeon with care. Ask to speak with at least two or three patients who have had the Op, by that Surgeon, ask the Surgeon how many failures he has had and what went wrong.
Let the surgeon and the Audiologists explain to you the possible problems and failures but don't be put off lightly.
It is a commitment to hard work on your part. Learning to interpret sounds is an ongoing exercise and quite hard work but, oh so rewarding. Just ask my wife or any cochlea implant patient or spouse, we'll tell you to simply go for it, we strongly believe it will be well worth your effort and expense.
Whilst I say that learning is hard work, it is far easier than the effort I used to put into lip-reading!
I sincerely hope you will pursue the matter.
Guy P.
February 14, 2001
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