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.

First CI communication

Going back in time I looked at a few messages that I saved on my computer from ten years ago. I was pleased to find my very first message to Rosi. Today I just want to take you all back in time to this message that can be regarded as a major turning point in my life. To Rosi - once again - thanks for being such a wonderful friend and most of all for still being there for me today.

I wanted to know a LOT therefore the letter was looooooong. I hope you would like to read it but if its boring you can of course just skip this!

(On the left is the first photo that I took of Rosi after we met in person for the first time.)

On the 4th August 1999 - the start of my CI journey - I wrote:


Dear Rosi

Some time ago I read an article about your cochlear implant in Sarie and was amazed on how similar our situations seemed to be. I only have e-mail and could not get so far as to write to you or try to visit your home page, but after yet another visit to an audiologist with the news that my hearing has again deteriorated over the past two years, I decided to take the bull by the horns and contact you.

My stepdaughter's husband visited your home page and passed the information on to me a few days ago. What a wonderful experience that was! Reading your story was almost as if I had a close look at myself!! Our interests and activities seem remarkably similar. E.g I am also a creative person who loves making beautiful things and have also tried my hand at the same crafts that you enjoy. My hubby calls them my "floating hobbies" since every now and then I try something new! Even our interests in sports seem to be similar!!

Anyway, this is not the main reason for this letter... I am very hard of hearing - I do not know what percentage of hearing I have but it is very little. I discovered my hearing loss about 25 years ago when my colleagues started complaining that I did not react to their communication when they talked behind my back. At that stage I went for a hearing test and the ENT surgeon identified it as a nerve defect which is not uncommon in older people although at that time I was only about 30 years old. (I am now 55 years old) Since then my hearing deteriorated considerably so that now I can only hear a few very low frequency sounds and find it impossible to talk on the telephone etc.

Over the years I taught myself to lip-read very well. So much so that audiologists normally do not believe that I have a hearing problem until after they performed their tests! What mostly amazes them is that my speech is not affected at all. Possibly since the first audiologist that I went to encouraged me to pay attention to my speech.

I used to wear two hearing aids during the past five years which helped a bit but is now totally inadequate and more of a nuisance than anything else. So I discontinued wearing them!

About two weeks ago an audiologist again advised me to consider a CI and also advised me to consult Prof. Swart. This obviously prompted me to contact you for a little more information. Before I get to my questions please allow me to explain a little more about my present situation.

About two years ago I also visited an ENT surgeon after an audiologist suggested a possible CI. This doctor however strongly advised me NOT to consider it and my husband agreed with him. At that stage he said that CI's were mostly done on children who are completely deaf and that for me it would result in too many conflicting sounds since, according to him, my hearing was still "too good". Well, with pressure from the doctor and my husband I forgot about it and carried on wearing the hearing aids.

Over the past year or so I however became aware of the fact that I slowly started avoiding conversations since I sit there without the faintest idea of what is said and find it very depressing to be with people without being part of the communication.

Also about three years ago my husband, Hennie had a problem with a growth on his tongue which was eventually diagnosed as cancer. This resulted in a number of operations on his tongue and severe radio therapy. He had three sessions lasting about six weeks each during the past two years. During this time he was really very sick and could hardly eat resulting in a weight loss of 25 kg which left him a shadow of the man he used to be. ( He just turned 70 in June this year). The radio therapy also destroyed his saliva glands leaving him without saliva with an absolutely dry mouth. He also has no taste. For a while after the first radio therapy he seemed to be OK. However, in January this year the cancer returned and he had to have more surgery to remove a lymph gland in his neck. During this operation they also had to remove an artery in his neck and the nerve that goes to his one vocal chord.

This resulted in him partially losing his speech. He can now only talk very softly making it almost impossible for me to hear him! I really have to lip-read very well to make out what he is saying. Most hearing people can however still communicate with him since obviously his hearing is not affected!! The funny thing however is that most people tend to talk very loudly to him since he has difficulty to talk!

As you can imagine Hennie's problem has been quite a blow to me since I always boasted about our wonderful conversations and the fact that, in spite of my hearing problem, we could communicate for hours on end about almost anything under the sun! This has now all come to an end since he gets very impatient to keep on repeating things when trying to speak to me. It sometimes now feels as if the only things we communicate about are "what to eat and where to go"!! This situation is also one of the main reasons why I feel it absolutely necessary to do something about my hearing.

After being to an audiologist yet again Hennie still does not believe in CI's and sadly does not support me in any way in my endeavours to find out more about them. He firmly believes that nothing can be done about my hearing and only regards my efforts as a total waste of money! I am however so desperate that I decided that I will carry on with my "research" and hope to convince him of the necessity in due course. I know him as a kind hearted person and know that he will eventually give in and help me but firstly I have to travel this road alone.

I think his negative reaction has a lot to do with his present health situation and that he is scared that something dreadful would happen to me making me incapable to support him. During the past three years he became very dependent on me. At some stage I had to attend to his meals every two hours. He could hardly eat and was so weak that he could attend to none of the usual tasks that he performed around the house and garden.

So much about our health and psychological problems!!

Obviously I am a bit nervous to see Prof.. Swart. I have an appointment or 16 August. If you could bear with me I would appreciate it so much if you could provide answers to a few questions regarding the evaluation for a CI.

1. You mention that you had 1% hearing before the op. It is difficult for me to judge how much that is since I can hear some sounds and seems to hear myself when talking but cannot hear other people. I was wondering whether how the little bit that I can hear will affect my hearing after a CI. Do you perhaps know of people who had the op who could hear a little bit before the operation? What sounds could you hear before the operation.
2. The exact cause for my hearing disability is unknown but may have something to do with the ear nerves. I believe that this can possibly render me an unsuitable candidate for the operation. Do you know of any people who became deaf late in life and had successful implants?
3. I heard that the treatment after the operation also consists of various speech therapy sessions. Did you have any? As I mentioned, my speech is not affected at present.
4. The cost of the operation is also a great factor. We will hopefully be able to pay but since Hennie is so much against the whole procedure as a result of the enormous medical costs we had for his radio therapy, I have to know what I am initially letting myself in for. I intend to pay for the preliminary tests etc. out of my own pocket and would like to know more or less what the tests etc. entails and what the costs more or less are. Obviously I can also find out from Prof.. Swart and has asked Hennie's daughter to phone him on my behalf, but you would possibly have a bit more detail.

Before I started writing to you my biggest problem was that I wanted to know so many things but really do not know where to start and what to ask. So if you have any more information than that which I could obtain from your web site and the article in Sarie I would be most grateful. I am going to a friend on Tuesday to have a personal look at your Web site and also to follow up on all the suggestions that you have there.

By the way my stepson- in-law thinks your web site is one of the nicest that he visited recently! I am looking forward to see all the pictures of your family. They surely are a great team and you are very lucky to have their loving support. I really am not complaining that I do not have the support of friends and family, but my own family lives far away and since I got married to Hennie very late in life (at age 42!) I do not have any children of my own. Hennie has three grown-up daughters who are also very close friends and they all support me in what I am doing.The only sad thing is that I still do not have Hennie's support which I obviously need most of all!

By this time you must have realised that I also share your love of writing! It feels as if I can carry on forever talking about myself, but for the present I will spare you that!! I love talking but have not yet talked or communicated in any other way with other deaf or hard of hearing people but will definitely consider it for the future. A short note from you and some answers to my questions will therefore be appreciated most sincerely.

Thanks for bearing with me. You seem to be such a wonderful person that I really find it easy to write to you - even if only to share my deepest feelings with someone that had a similar problem. Obviously I would also like to know how you feel a year after the op.

I sincerely hope that you can already enjoy music again. Hennie is a great lover of music and it is always bad for me when he starts listening to his beautiful music and all I can hear is the doef doef of the bass instruments!! I was not sure whether I should write to you in Afrikaans or English but opted for English since it seemed to be the obvious choice, but I have the feeling that someone named Adendorff ( with a pet called Wouter?) must be able to speak Afrikaans! I am a bit more comfortable with Afrikaans but have no specific preference. An Afrikaans letter will however be most welcome maar dit maak nie saak nie! Enigiets is welkom!!!

As you see I was so desperate and had so much to say being able to communicate with a person that I knew would understand that I could hardly stop writing. Well of course I can still write as much today as you all know and I don't mind doing it because my written communication was one of the main things that kept me going through the past ten years.