Four implants, two ears, one can hear
Julio could probably say having a cochlear implant saved his life. No one was able to determine why he had lost his hearing and nothing showed up on tests. When his cochlear implant malfunctioned - not once but twice further tests revelead he had a huge tumour - Acoustic Neuroma on his hearing nerve which was pressing on his brain stem. Had it been left he would certainly have lost his life. Julio tells his poignant story with humour and self deprecation.
Julio Gupte 2009
Download a copy of Julio's story
In 1973, when I was 11 years old, it was discovered I was completely deaf in my left ear, but I had normal hearing in my right ear (probably the only "normal" thing about me!). The doctors were not able to determine what had caused my deafness, whether it was from birth or had developed some years later perhaps when I had both Mumps and Measles within a span of three months. When I was diagnosed the specialists recommended I get the hearing in my right ear checked at least once a year. And so, for the next five years I religiously had it checked. During this time there was no change so I slowly dropped my appointments to about once every two years, then not at all.
In November 1990, while I was reading an engrossing book (Agatha Christie) I did not notice that over a span of about four hours my hearing disappeared completely, to be replaced by loud tinnitus masking all other sound. (This tinnitus sounded like thousands of Cicadas chirping). In panic I went straight to St. Vincent's hospital and consulted an ENT specialist, who prescribed Steroids and ordered a CAT scan to see if he could diagnose the problem. After two weeks my hearing gradually returned to about 80% of normal, although I still had some residual ringing. The doctor could not determine if it was the steroids which had reduced the tinnitus or if it had reduced naturally.
After having the CAT scan, I started making enquiries about the best hearing specialist in Sydney, and came across Professor Gibson. I was told he was not only the best in Sydney, but in all of Australia. Best of all, he practised at Royal Prince Alfred hospital, not too far from my home in Randwick. So I took the results from the CAT scan and went to see him. Unfortunately he could not diagnosis my problem either and therefore, could not prescribe any treatment, so my hearing continued to slowly deteriorate.
By late 1993 I was hearing so little that Professor Gibson suggested I have a Cochlear Implant. Since I did not have health insurance, my options were severely limited. I could get Health Insurance and wait two years to have a pre-existing condition treated, put myself on the waiting list for a Government funded implant (also about two years) or pay the not inconsiderable sum of $25,000 out of my own pocket.
But then Professor Gibson suggested another alternative. I could join a trial being conducted by Cochlear of the (then) still in development Nucleus 24 system along with three other people in Melbourne. I eagerly jumped at the opportunity, and was implanted in March 1994, with the processor switch-on in April.
Unfortunately, this implant did not work correctly for me. When trying to program it, I started experiencing minor shooting pains even when the electrodes were activated at just a medium volume. Dr. Denise Rockey tried every trick in the book to overcome this, but to no avail.
I also found out the other three guinea-pigs were experiencing problems with their implants, although each of us exhibited different symptoms. Dr. Rockey called in the big guns, the Research and Development team from Cochlear which had designed this implant and processor. For the next four months, I spent every Tuesday evening, from 2:00 PM to about 8:00 PM at the Cochlear factory in Lane Cove undergoing tests while the boffins tried to figure out what the problem was. Finally in September 1994 the Cochlear team decided that continuing with the experiments was too dangerous and there was a risk of so damaging the remainder of my hearing organs that I would not be able to use any form of implant. So I was "switched Off".
Part of the agreement with Cochlear for taking part in the test program was that if for any reason the Nucleus 24 was unsuitable, they would replace it with the Spectra 22 - and earlier implant version. In May, 1995 I had the Spectra 22 implanted, with "Switch On" in June. And, lo and behold, the pain came back. So back to Cochlear for more experiments and tests to try to figure out what was going on. So far I was the only person world wide that was experiencing this sort of pain with the Spectra 22. Cochlear were at their wit's end and despite months of testing they could not determine the problem.
In October, 2005 I mentioned to Dr. Rockey, who was still helping me with my rehabilitation, that I was getting tremors in my left leg. She immediately sent me for a batch of tests, including a Balance test, a CAT Scan and a Spinal Tap.
The Balance Test:
This test was conducted at the Balance clinic of the Royal Prince Alfred Hospital where they used the latest technology to test my balance. The Doctor had me stand on a large square sponge cushion and close my eyes, then caught me as I fell. Thus he confirmed I had absolutely no sense of balance! (I was riding a motorcycle to work everyday at the time!) He then had me sit in an office chair and spun me around very fast. After suddenly stopping the spinning, he looked into my eyes with a magnifying glass (I am not sure what he was looking for). As I said, cutting edge technology!
The Spinal Tap and CAT Scan:
Due to an administrative mix-up, I was scheduled for the Spinal Tap and CAT Scan on the same day. I duly reported for the Spinal Tap to the Day Surgery ward at 9:00, and asked the nurse to ensure that the Spinal Tap did not run late as I had the CAT Scan booked at 11:00. She just laughed and told me to get the CAT Scan done first, as I would not be going anywhere for several hours after the Spinal Tap.
So, off I went for the CAT Scan. I then came back to the Day Surgery ward, and was sitting reading a magazine, when I noticed the technician from the CAT Scan come in and talk to the nurse in charge of the ward. I thought I noticed that she lost all colour on her face, but I didn't take too much notice. After the technician left, she quickly beckoned me over. I put down my magazine and went to talk to her. She informed me that the Spinal Tap was cancelled and that Professor Gibson wanted to see me immediately. So I went to retrieve my magazine, whereupon she told me to forget the magazine and go to see the Professor immediately. At this point I thought to myself "Hullo, something's up!"
Professor Gibson, who is a ruddy complexioned Welshman, saw me immediately (highly unusual), and he too was very pale. He explained they had found a tumour growing on my hearing nerve, an Acoustic Neuroma, and this was causing my deafness. He also told me (and here is the reason everybody was in a panic) the tumour, which is normally detected when about the size of a pea, was big - the size of a tennis ball. It was so big it was pressing against my brain stem, which was causing the tremors in my legs as well as a shortness of breath (and here I thought I was just out of shape). He urged me to book an operation as soon as possible.
Normally these Acoustic Neuromas are the first thing that doctors look for when presented with a problem like mine, and a CAT Scan is how they look for them. At Royal Prince Alfred Hospital they had started using an intravenous dye to highlight tumours, but at St. Vincent's, where I had the original CAT Scan done, they did not. I had forgotten to mention to Professor Gibson that the CAT Scan was from St. Vincent's, and not Royal Prince Alfred. So when he examined the CAT Scan results he had looked for the dye highlighted tumour, and of course didn't see it. That is how it was missed.
On the bright side, at last we knew what was causing my deafness! but I still did not appreciate the gravity of the situation. If the tumour was not removed immediately, I would suffocate to death within six months (the brain stem controls breathing).
About a week later I had an operation to remove my Cochlear Implant so I could have a MRI scan done and this scan confirmed the size and location of the tumour.
I had an appointment with a Neurosurgeon, Dr. Besser, one of the most skilled neurosurgeons in Australia at the time. My mother and sister came along to provide moral support, but came out almost in tears, while I was very optimistic (from lack of knowledge rather than confidence in the doctor's abilities). What I didn't know was that the Doctor had rated my chances of survival as very low!
The day of the surgery rolled around, and Dr. Rockey visited me the day before. I asked her to tell Dr. Besser that I did not want staples used to close the wound, but old fashioned stitches. She said she would mention it to him, but that stitches usually took a lot longer, and my operation was likely to take six to eight hours as it was. I told her I did not care about how long it took, but that I wanted stitches and not staples. So, naturally, when I woke up, I found I had staples. I was very upset with Dr. Rockey, as I was sure Dr. Besser would not have disregarded my request (little did I know!).
As the tumour had grown so big, it had engulfed the facial nerve that controlled my face on the right side. The doctors had to remove that nerve also, and to give me some movement of my face, grafted a section of nerve from my leg. (Now, to smile, I don't try to move my face - I just tap my foot and my face moves!) They also extracted some fat from my bum to fill the hole left when the tumour was removed. When I expressed some concern at this, Professor Gibson told me "it's not that the quality of my head is that bad, but that the quality of my bum is that good"!
All in all, the operation lasted just over 15 hours and there were three shifts of nurses involved in the marathon operation. I believe I actually died on the operating table three times, but was revived by using the "paddles". Unfortunately, as I was asleep at the time, I do not recollect seeing a tunnel, or a light at the end. Then again, that maybe because I will not be going to heaven when my time does finally come!
When I woke, I had a tube down my throat (to help me breathe - so they say!). But this tube was chocking me, and I struggled to swallow. However, the nurses in ICU are obstinate, and just would not remove it. Finally after much struggle, I managed to get them to remove it and could finally breathe. By the bye, do you know how hard it is to make yourself understood when you have a tube down your throat? All that comes out are a series of grunts. And when the other party just doesn't want to understand...
After two days I was transferred to the general ward and here I had my bitterest disappointment. I was really looking forward to a sponge bath. All my nurses were really cute, young things, and after all the stories I read in Playboy (evil grin). Unfortunately, they were wise to me, and sent along a male nurse for my sponge bath. And to add insult to injury, he was gay at that. I can assure you he enjoyed that sponge bath more than I did.
For a few weeks after the surgery I was very weak, uncoordinated, and I needed help walking. A physiotherapist taught me to walk again by making me walk up and down the corridor. About a week later I was sent for more (minor) surgery to put a gold weight into my right eye lid so I could blink properly. They also sewed half the eyelid closed. I have a thing about putting things in my eyes (I can't even use contact lenses because of this phobia), and yet I saw the scalpel coming towards my eye. Very stressful.
That afternoon the nurse removed the staples. (The very same staples I did not want, remember.) With the stress of the morning, and now this, I had an epileptic fit. I started shaking badly, rolled my eyes up into my head, and fell out of my chair in a dead faint. Gave my mother and the nurse a good scare, I did. (I counted 37 staples removed before I freaked out. Don't remember how many more there were though.)
That evening a doctor came and hooked me up to an intravenous drip for epilepsy medication but I think she stuffed up and missed the vein. After about half an hour, my arm started burning, and slowly the burning spread up to my shoulder. I asked the doctor to reposition the drip as it is not supposed to burn. But she refused, telling me I was just imagining the burning. As if! After bearing this burning for as long as I could (about 2 hours), I insisted it be removed. The nurse, then the doctor, again refused. It is only after threatening to remove it myself (rip the bloody thing out! were the words I actually used) that they finally removed it, after warning me that it was "against medical advice".
Then I had to wait in hospital for one week extra because I needed some test, and the only person who could perform that test was on holidays (it was the Christmas/New Year break). Finally, after three weeks in hospital, I was allowed home on the proviso I would stay home for a further six weeks before I returned to work.
In March 2006 I was offered a Nucleus 22 Implant in my left ear, relayed by Professor Gibson, from the Cochlear company. Professor Gibson warned that as I had been deaf in my left ear for so long (at least 24 years by that stage), I would probably not be able to hear properly, but it would at least help me to lip read.
But when I was "switched on", I was able to understand what I heard quite well and in the time since then, my comprehension has gotten better. This led to a startling discovery by the Cochlear boffins. It had been assumed that Cochlear implants were not very successful in people who had been deaf for a long time because of a deterioration of the hearing nerve. But it now appears that poor success is due to the brain losing it's ability to interpret what it is hearing.
In 1998 I was approached by the Cochlear company to trial the new Spectra 22 Behind The Ear (BTE) processor. As a reward to participating in the trial, I would get to keep the new processor. All I had to do was to keep track, for six weeks, of how long the batteries lasted. This took me about 1 minute every day, times seven days, times six weeks, or 42 minutes in total. For this much hard labour, I was given a processor worth about $6,000. The best pay I have ever received! I wish they would hire me as a full time tester.
I was very happy with the development of the BTE processor, as I always found the cable between the Nucleus processor and the ear piece a great hassle. For example, I used to wear the Nucleus 22 in a little pouch on my belt, with the wire running under my shirt to my ear. Now picture this - I go to the toilet, drop my pants, and next thing, my chin is pulled down to my knees! Or when I go to buy a pair of pants, and forget to wear a shirt with a pocket. I have to remove the processor, hold it under my chin, then struggle to take off my pants to try on the new pants, all the while holding my chin against my chest so I don't drop the processor. Another hassle - trying to talk to my wife in bed at night with the processor on - I usually end up strangling myself with the cable!
On the other hand, in the first months after getting the BTE processor, twice I forgot to remove it before having a shower. There I was, soaping myself, and it never occurred to me that I could actually hear the water running (until I went to shampoo my hair).
Luckily it only cost me $350 to get the processor rebuilt each time.
In mid 2005 the implant started giving me problems. I was hearing a continuous buzzing, and the sound I was hearing was like it was coming from under water. This soon became very annoying. The Cochlear Implant Centre performed tests and concluded that two or three electrodes in the Implant had malfunctioned. The only way to fix these was to replace the implant.
What a joy! It is a real drag not being able to hear.
So, in June, 2005, off to hospital I went - again. This time the operation only took about 1 hour, and I was released the next day. After switch-on, about two weeks later, I could hear again. What joy! It is a real drag not being able to hear.
My latest check-up revealed I can understand 80% of random words with background noise, and 100% of sentences with no background noise. This is near perfect hearing. A much better result than anybody anticipated - even the most optimistic.
And the saga continues...
I think I am a world record holder in that I have had four implants - in two ears. And still I have only one usable ear.
Now, for some personal experiences.
I am always asked how it sounds.
The best explanation I can come up with is that it is like the sound you hear through those string telephones we played with when we were children. You know, the ones with two tin cans joined with a string. The sound is very metallic and flat, with very distinct variation in frequencies. Sort of like a multi-band graphic equaliser (remember those?) with every alternate band turned off.
One aspect that most deaf people do not expect, and are startled by, is that everything now makes sounds. Many deaf people are very embarrassed by the amount of noise the toilet flushing makes, sure that everybody in the neighbourhood can hear them every time they flush! They are usually amazed when they hear the rain fall for the first time, startled by road noise, and fascinated when they hear a plane roar overhead.