The miracle explained

This past week I had to explain some about audiogrammes in a community that I belong to on the Internet. In my search for information I decided to use some of my old audiogrammes that I kept since my hearing loss was diagnosed for the first time. For purposes of this blog I think it will be interesting to show them for the record too because it shows how little I could hear 20 plus years ago and what was restored with my implants. To me this looks like a wonderful way of looking at the miracle of cochlear implants.

For those of you not familiar with reading audiogrammes I also include something on how to read and interpret them. So let’s see what I lost and what I gained…
I will only summarise the main information and you can find more here:

http://www.audiologyawareness.com/hearinfo_audiogramread.asp

I will further explain the audiogram for sensorineural hearing loss with examples from my own audiograms.

An audiogram is a chart of a persons hearing ability. There are some different styles of audiograms, but most use a standard set of symbols for representing items on the chart.

The audiogram reads in frequency (pitch) indicated as Hz, across the top or horizontal axis and it reads in decibels (loudness) down the side or vertical axis. Just like a piano's keyboard, the pitches are low on the left side (125 or 250Hz), and then gradually climb to higher pitches on the right side (8000Hz). 0 dB is not the total absence of sound but merely the softest sound that a person with normal hearing can hear. Normal conversational speech is about 45 dB (also referred to as the hearing threshold).

(If you are not familiar with what happens during a hearing test – please refer to the link provided above)

Ranges of hearing loss for adults are as follows:




To understand an audiogram one should be familiar with the symbols used to read the audiogram. The legend for these are as follows:





An audiogram for a person with normal hearing (in the left ear) would look more or less like this:



To explain further I will use my own audiograms before and after my cochlear implants.

This is a scanned copy of my very first audiogram:




(Since the audiogram is now almost 30 years old I transferred the information to a new graph for this blog discussion).



This audiogram shows how my hearing dropped rapidly at a range of 1000 Hz and above for both ears resulting in a moderate to profound hearing loss for the right ear in the higher frequencies and also indicating a sensorineural hearing loss. My left ear was slightly better with less hearing loss in the high frequencies. Both ears show a severe loss in the normal speech range.

Ten years later the audiograms looked like this:



At this stage my hearing was beyond the normal range for the lower frequencies and way into the severe to profound range for the high frequencies.
Another ten years later brought me to the stage where I had my first cochlear implant.



As you can see I could only hear very soft sounds up to 250Hz between 30and 60 dB which meant that I could hardly hear anything and particularly not in the range for speech. Most of the high frequencies could not even be measured and my hearing was what is often referred to as “off the charts”. There was no doubt at all that I was a good candidate for a cochlear implant!

My hearing in the left ear was a wee bit better and did not deteriorate much further till 2005 when I had my second implant. After that the miracle was complete for me since I was back into the mild hearing loss range for both ears. This is what a hearing test revealed two years after my bilateral implant.



Since 2005 the miracle continues every day with my CI hearing getting better all the time. I came to realise how much the bilateral implants mean to me since I have been wearing only the latter implant now for about a month because my other processor is sent in for repairs. I miss hearing from both ears and think it is such a pity that we now have tot pay to hire a loaner processor. I refuse to do that!


I am just happy that I am one of the lucky few who have a second processor as backup. It is a shame that our processors have to be sent to England for repairs even if its just a small plastic part that is broken of – like the little piece of rubber that covers up the Freedom to prevent it from attracting moisture. For something as simple as this I have to wait more than two months before the processor is returned to me. The other one is already broken again too and when I receive the one that is in for repairs now I have to repeat the waiting part for another 8 to 10 weeks Sigh…

OK I did not really want to vent but the back-up service from Cochlear is beginning to suck…

At least I can hear and if need be I will also have the old 3G mapped for a further backup. What deters me from doing that is that it is expensive. Depending on a small pension for income makes me think twice before just having new maps done or hiring processors.

Mother’s Day and a Return to sound

This is the story of how I made a “right” turn when I came to a fork in the road on my journey back to the hearing world on Mother’s day 2004…

I was in a state of denial after my first bad experiences of not coping well with my first CI (a long story that I will come back to later on.) and I went for days without sound. Being alone at home and not having anyone to talk to I often did not even put on my CI. The only people I talked to apart from some here and there in the shops when it was absolutely necessary were the few CI friends that visited me.
One of them thought that I needed company and nagged me to tryout a dating site on the Internet. I was not at all interested but later on decided that I would give it try just to shut up this friend because I did not believe that anything good could come from it.

Well, a guy by the name of Kalie replied and wanted to meet me in person. I was hesitant but since Mother’s Day was around the corner I decided that it may be the ideal safe opportunity to meet this stranger. I would have my 93 year old mother with us for the day as well as my two young nephews. Anyone who could cope with them would be OK in my book.

Now you must have a little background about mother and the boys…
Mother was one of the most curious people I ever knew. She would ask questions of a complete stranger that would make me cringe. She seemed to have no way to evaluate the personal nature of her enquiries and just had in mind to learn as much as she could about any stranger. I think this is an inherited trait since my grandpa was just like that too. And maybe I am becoming so as well the older I get. I do however believe that I am a bit more sensitive for asking very personal questions of strangers though.

My two nephews were all fun and also not shy to play pranks and have fun. I reckoned that it would be a good test to see if this stranger can handle mother AND the two of them and pass their scrutiny.

I was a bit scared of course but the scene was set as Kalie arrived right on time at 10:00 that Mother’s Day morning. The boys kept to the background more or less but mother was immediately interested. I did not tell any of them much about Kalie apart from mentioning that I met him on the Internet. The Internet being something altogether alien to mother and the boys just chuckling about their “old” aunt getting involved with a man from a dating club. The one whistling the tune to a SA lyric called “Wat maak oom Kalie daar” (What is uncle Kalie doing there?” LOL)

Well much to my surprise (and theirs I think) Kalie was unperturbed and immediately sat down talking to mother and answering all her questions! NO problem whatsoever and it actually appeared as if he enjoyed it! Later on he was tending to the barbeque with the boys as if everything – the house included – belonged to him! Bossing them around to help with the fire and the barbeque! I could not believe that we only met him that morning since he was so “at home” with us. At 11pm that evening he started making plans to go home and wanted to know when he could visit again…
From there on things developed quickly and we ended up as friends and soul mated within a few months and after about six months he moved in with me.

From that moment onwards sound returned to my life. I suddenly had someone to talk to all the time. More than that he came with his love for traditional Afrikaans music called Boeremusiek. The radio was on all the time and I had to accompany him to gigs and Boeremusiek events. I joined the local Boeremusiek Guild and met the most famous musicians and started sharing Kalie’s interest in the history, development and preserving of this music genre.



Without noticing it at first my hearing benefitted by this new exposure to sound. Within three months I could hear so much better and it was only then that I finally believed that one had to “train your brain” to get used to electronic sounds…

So Mother’s Day was the day that I took a new road in the journey back to the hearing world. More than that however it brought Kalie into Mother’s life. Looking back at it today that was the best Mother’s Day gift that we could ever pass on to her. He was the one that made sure that I do not neglect her and visited often. He also was the one who took care of things when she was unable to communicate with anyone but him after a stroke caused by severe stress (what we believe to this day was due to ill treatment in a nursing home).

Kalie was also the last one to communicate with her when no one than him would evoke a response from her a day before she passed away...

I never had children and strictly speaking no need to celebrate Mother’s Day in the normal sense of the word. I have only been a “surrogate” mother to my siblings’ kids and Kalie’s children and they do not owe me any Mother’s Day greetings or recognition and that is right and OK

However - tomorrow Kalie and I will celebrate our fifth anniversary but more so we will remember Mother’s Day and Ouma and my return to sound…and Mother’s Day will forever make it easy to remember exactly when we met!

Enjoy the day! Even if you think about it as just another commercialized silly holiday – it means different things to different people and I hope that my story brought a smile to some of you.


In the photo:
Kalie and his Boeremusiek friends at a gig that he arranged with them for mother and her cronies at the Old Age home for her 92nd birthday.

My First Hook-up

Today I cannot remember much of that first hook-up except that it was a bad and disappointing experience.

My hook-up was on the 29th of November. My sister Hester accompanied me and we took the usual cakes etc. to celebrate the occasion but my heart was not really in it! All I wanted was to start hearing again and I had high hopes that I would return home and hear Hennie once again. The moment of hook-up was one of the most disappointing experiences of my whole life!! All white noise!! I just put on a show for everyone present. Smiling, trying to laugh and pretending that I was pleased with what was supposed to be my "new" hearing! I even kept up the pretence after getting home since I was so scared that Hennie would say: "I told you it was not going to work!!" Instead he just said: "You expected too much! You must be patient, it will get better!! Now open your presents!!"


The next was discovering that the processor was faulty. In hindsight this was a blessing in disguise because my processor was returned to cochlear and I was fitted with a Sprint body processor and all sounded more like speech. This made it possible for me to hear Hennie’s last words, to follow word for word during his funeral a week later and to have quite a wonderful CI moment hearing the birds the morning after his death... I am not going to repeat those much told stories here but you can read about them again on my home page if you want to.

For the rest the hook-up photos will tell the story. In those days I was not so obsessed with photos but fortunately I had quite a few taken and today they are part of the memories and this life-changing experience.

My wonderful sister was at my side once again for hook-up! She travelled all the way from their small town Coligny – more than a 2 hour drive to be with me. See how good we looked a mere ten years ago LOL




Esti did the hook-up as shown by the following photos:

Esti explaining what its all about and showing me how to use the tiny switches etc.

My first try at putting on my new “ear” As you can see I was not yet comfortable with doing this LOL Today I don’t even think of it and just use one hand to plonk them onto my ear(s) and off I go.






My absolute astonishment at the moment of hook-up! It seems as if Esti and the other audiologist (I cannot remember her name and she was not one of the team but attended out of curios ity) was really thinking that it was a wonderful experience for me NOT!!





More (awful) new sounds and me trying to explain to Esti what I heard. You can see she is a bit more concerned than in the previous photo LOL Elna looking on.





Esti, me, Elna and Ronel with her then still very tiny baby. (Today this kid is almost a teenager…and has a little sister too – beautiful children)

My sister with Elna and Esti – All of them all smiles believing that they attended the most wonderful day of my life. Today I can smile about this…








Hester with the cake to celebrate – at least the cakes and tea were good.

My first CI surgery - 11 November 1999

The next stage in my hearing loss journey was the final evaluation and surgery. At the time my husband was terminally ill and everything evolved around his needs that took up all my energy and made for the most stressful days of my life. To this day I think I still push those memories to the back of my mind and refrain from dwelling on them too much.


I had to go through the surgery and what preceded it without spousal support. On the morning of the surgery the best thing was that my sister appeared in the hospital room just before I was wheeled to the operating theatre. She travelled over 200 km to be at my side and I will never forget that. She was still there when I came through after the surgery – very dizzy and completely unable to function all by myself.


Better than that even was that my very sick husband was also there albeit only for a short while. I later learnt that he collapsed at the entrance of the hospital when going home…


The hospital was terrible and I spent a fitful night unable to sleep with almost no assistance from the nursing staff.


I NEVER slept!! I suffered from terribly nausea, dizziness and blackouts whenever I tried to turn my head. I cried most of the night because there was no bell at my bedside and I couldn't get hold of anyone to help me. It was nothing short of a nightmare! In fact whenever I tried to close my eyes I had hallucinations and saw the most awful scarred faces!!


All I wanted was to get home to my own bed. The next morning I was still not able to stand up and was totally off balance. So much so that Prof. Swart was not over anxious to discharge me but my friends Edna and Phyllis promised that they would look after me and took me home. Prof. Swart personally pushed me to the car in a wheel chair. I can even remember him putting the safety belt on for me.


What bliss it was to get home with flowers everywhere and gifts to open! I immediately felt 100% better!


Once home I recovered quickly. I was however still quite off balance for a week after my surgery. There was no time to mope since Hennie was sinking fast. Three days after my surgery he was hospitalised again and I remember arriving at the hospital with the huge bandage still on my head!! I looked more like the patient than he did!


I cannot remember much about the time between surgery and hook-up since every moment was spent caring for Hennie as he faded fast and I knew that the time of his death was drawing closer by the minute.


You can read more about my emotions prior to the surgery here:


http://wia.viawias.com/cijourney.html

The CI team

This blog will be very incomplete without mention of the CI team that accompanied me all the way during the past ten years.

Prof Johannes Swart was the team Leader when I had the first implant in 1999. I got to know him as the most caring and compassionate surgeon that you could wish for. Also that he is regarded as one of the best CI surgeons in the world and that is not only ME saying so! However it is his personality and the old time-real interest in his patients that puts him ahead of others.

Prof Swart also did my second implant. He is still part of the team but has now retired from his position as Head of the Ear Nose and Throat Department at the Medical School of the University of Pretoria. His assistant Dr Elnemarie Burden is also still with the team and has the same compassion and caring for her patients than Prof Swart. To both of them my sincere thanks for all the love and support and interest in my wellbeing over the past ten years.

As you know the surgeons are important but the audiologists are the people that put you on the road to hearing and stays with you throughout good and bad times. I can write a book about my experiences with the audiologists on our team - we had our disagreements but the good times are better remembered. In hindsight I can only say that they did a marvellous job all along. If I now look objectively at their very high work load and the stress that is part of their day I have to admire them all the way. I think in the past - and especially in the beginning - I was so tied up in my own distress that I often missed their true dedication. There were a few of them...

The first audiologist that I met at Pretoria University was Esti Nel. She did the evaluation for my first CI and was also the person to "hook me up" to my first implant. I can still vividly remember her astonishment about my ability to lip read at the time of the first evaluation. She did not believe that I was deaf until she realised that my hearing was "off the charts". Esti immigrated to Australia shortly after my first implant and I did not have any further contact with her after that time.

Ronel Chester Browne was the second audiologist that I met when she had to explain the CI procedure to me and show me the "hardware". At the same time she arranged for me to meet other patients with CI's and the first one I met was Pat Jones from Zimbabwe. I can still remember very well having tea and cakes with them at the old ENT hospital in Pretoria. When we met Ronel was expecting her first child and this little baby girl attended my hook up! Today she is of course almost a teenager and has a little sister as well.

Of all the audiologists throughout the years Ronel (Photo on the left) is still on the CI team and still does my maps! As you can well imagine we are "old" friends by now. The audiologists are also still regarding me as their "most-often-mapped" patient. I am not sure but I think I had close to 200 mappings over the past ten years. It may even be more. I definitely made sure that they got to know me (smile)

In between there was Nicci – another darling woman that did a lot of maps for me at the time when I really battled numerous hearing problems and when we simply could not find solutions for all the weird sounds and such. I was sad when Nicci also left to live and work in England.

At present Dr Cathy van Dyk is doing most of my maps. Catherine joined the team a few years ago. I do have a wonderful relationship as a patient with this dedicated professional with the excellent sense of humour. May we have the opportunity to know each other for a long time to come.

Apart from the audiologists there is also Elna Schoeman – the psychiatrist that I had to see at the time of my first implant. Elna also became a good friend after I again met up with her at the time of my mother’s demise and after a terrible high jack/burglary at our house a few years ago. I got to know Elna as THE person that you could consult whenever things became tough and you felt as if you were losing the battle against depression.

Well this is just a short introduction and I am sure the names of these people will surface again as I revive further memories. To all of them a hearty THANK YOU and a TIGHT HUG for being there for me throughout the years.