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PATIENT AND FAMILY STORIES

David and Ruth: Melbourne, Victoria

David
DavidB
I have been a health professional all of my life, firstly as a pharmacist, and later as a chiropractor. My greatest joy has been listening to peoples’ stories of their lives and being able to advise them about their health issues. I know that I have made a difference to their health and to their lives. I have been a member of a choir for many years and enjoy singing in harmony with my fellow choristers. When my hearing began to fail I had surgery twice, and then when it failed further I was fitted with hearing aids. I can now hear perfectly and enjoy singing, social gatherings, and conversations with friends and family. I have agreed to donate my temporal bone when the time comes in the belief that it will help medical science to further understand the problems that people like me have experienced with hearing.
On the occasion of his 80th birthday, David requested that his family and friends donate to the Society in lieu of gifts. David raised $1,500. Thank you very much David to you and your very generous family and friends; your donation is much appreciated.
 
 
Ruth
RuthB
My husband David has had problems with hearing for many years. He had surgery on his ears when he was younger but when he was in his sixties his hearing deteriorated markedly. He was unable to converse with friends and our grandchildren, and became frustrated when he could not hear them. After he was fitted with hearing aids his life changed dramatically as he is able to hear clearly, and it gives me great pleasure to see him taking part in family conversations now. David has always wanted to help others; which is reflected in his career. I am very proud that he has registered to donate his temporal bone.
 

 

Trevor: Geelong, Victoria


Trevor
How do you explain that your head doesn’t feel connected to your body properly? What the heck does that mean? My head feels like it wobbles in space. The world doesn’t stay still when it’s supposed to. It’s not like giddiness or vertigo. They are momentary. This is not. It is constant, always present. It does not go away – ever! It has resulted in panic attacks, nausea, and anxiety and depression, but I’m getting ahead of myself.

My story began in Geelong in March 2014. I had a little blood in my urine and the urologist decided it was worth doing a rigid cystoscopy, so I had the procedure done with normal protocols in the operating room of a major hospital. The cystoscopy was straightforward and everything was completely normal. I was sent home. Twenty-four hours later I had a raging fever, and after a quick phone call to the hospital I was re-admitted. What followed was a widespread urogenital sepsis with inflammation and severe pain and a left testicle the size of a cricket ball. After four days of intravenous antibiotics and morphine I was on the way to recovery, but when I got up to go to the toilet I felt “loopy” – a bit like the feeling when you’ve had a little too much to drink. I didn’t think too much about it. I was pretty sick and I just thought it was all the morphine I’d been having. Then at the end of the week I was discharged to recuperate at home.

On the way home I still felt “loopy” but I still put it down to the after effects of the drugs I had been given. But after a couple of days nothing changed and it seemed that something was wrong. I couldn’t move without this odd sensation of my head wobbling when it shouldn’t. Then came my first panic attack and I collapsed. The doctors at the emergency room investigated me for likely causes, their main concern that it was a heart attack – me being a sixty nine year old male – but of course it wasn’t. That was the first of several equally traumatic attacks and what set in to become months of extreme nausea and anxiety and depression, and investigations by several specialists that led to me being referred to the Balance Disorders and Ataxia Service at the Royal Victorian Eye and Ear Hospital.

Two years on I now know the whole story. I was given intravenous gentamycin during my hospital stay and a rare side effect of this antibiotic is that it can damage the balance organs in the inner ear. These are biological gyroscopes that are part of the system we have to balance in a three-dimensional world. I was unlucky enough to experience this side effect. My gyroscopes are slow. They don’t react to changes in position quickly enough. It takes them a little while to “catch up” with my actual movement, making it seem like the world moves. The sensation is weird. The damage is permanent, but after a year of vestibular physiotherapy rehabilitation I have overcome most of the anxiety and have somehow compensated for the physical disability.

This is a good news, bad news story. The bad news – well that’s pretty obvious. The good news is I’m alive. The doctors told me I had a systemic infection that could have been fatal. Also, though damaged, I still have some vestibular function – 30% in my left ear and 60% in my right. I wobble but I can still function. I am getting on with life, enjoying retirement with my lovely wife, my children and grandchildren, travelling and playing guitar in local churches. As a postscript, when I die I get to donate my temporal bones to the Australian Temporal Bone Bank so they can assess the actual physical damage, something that cannot be done in life, and further their understanding of how these amazing little organs work and respond to such damage.

Read more about Trevor’s story and the treatment available at the Eye and Ear Hospital here.

Michael: Melbourne, Victoria


Michael
I was diagnosed with Halmagyi’s Syndrome, which is now known as CANVAS – Cerebellar Ataxia with Neuropathy and bilateral Vestibular Areflexia Syndrome. This condition affects balance (cerebellum in the back of the brain), the vestibular system (inner ears) and causes stiffness, mainly in the legs and feet. Luckily it seems not to affect other functions of the brain, so I can live a reasonable but diminished cerebral life.

Balance has been my bête noir ever since secondary school in England. Its deterioration has been exponential over the years. Beam work was always the last item I passed in each gym category. When on our honeymoon (age 28), I had to use a stick for balance when walking in a stream; not so Maureen (my wife of 53 years). In 1981 (age 47), I had trouble going beyond the chain on Uluru and I could not descend to the Garden of Eden at King’s Canyon as did the others. From 1986–2000 I was a cross country walker – but never along trees over steams. By 2011 soft sand was troublesome as was boogie board surfing.

Since 2015 I have needed to have a steadying arm on my daily walk, even using a walking stick, to maintain a reasonable pace (I have been a coronary patient since 1974). Maureen cheerfully and ably helps me walking. I often use a walking stick within the home now to avoid lurches and falls. I wear an emergency call pendant at home. So far its use has been routine or due to my carelessness – never for real! Long may that last! The last affliction is sleep apnoea; they make a formidable trio. There is no treatment per se for CANVAS. I have been to balance clinics to learn how to stay upright, which has been very helpful, as prevention is always better than cure. Some physiotherapy exercises help, but my daily walk is the best. My general practitioner and neuro-otologist work closely together to keep me healthy, happy and contented, for which I am most grateful.

I have been a keen philatelist for over seventy years embracing mainly postal history. I edited a journal for a decade. I am still a prolific writer and at times an assistant to others less able than I with a computer. Being able to use a computer as my writing deteriorates into illegibility is a boon. With severe balance and eye fatigue problems, visits to galleries and going to concerts or plays has become less frequent and takes much more organising. Low light levels (as a result of vestibular failure) are catastrophic, as only the eyes are available for balance. The loss of both manual dexterity and balance is frustrating, as Mr Fixit cannot do many of the home repair jobs of yore or gardening. Luckily we do not have a pond! After a triple by-pass heart operation in 1984, I suffered a pleural effusion and split my front. After being sewn up again, I was given gentamycin. It was only much later that I learnt of its deleterious effect on balance, which has not been quantified.

As an engineer by profession I was always involved with both research and design, and production. Looking for a better way by experimenting with new materials or production methods was second nature. Hence, I am happy to donate my temporal bones and brain for medical research, in the hope that somebody will learn more. Possibly one day they may unlock a genetic link for balance sufferers, be it CANVAS, Menière’s Disease or some as yet unidentified balance problem, and use genetic engineering, for example, to improve our lot. My family fully supports my donations to both the Australian Temporal Bone Bank and the Victorian Brain Bank.

Michele: Melbourne, Victoria


Michele
I am a retired microbiologist and while most of my career was in medical microbiology I also worked in veterinary and environmental microbiology. I noticed a problem with my balance about five years ago and initially thought it was age related. However, when it became more pronounced I sought medical help. It was difficult to describe: some doctors said it was vertigo although I constantly said that I felt disoriented not dizzy. It was most apparent in large shopping centres, to the extent that I asked my general practitioner was there a condition called “Shopping Centre Syndrome”. After much laughter he began to question me and I told him that by the time I walked through a centre I would stagger around like an old drunk. I was sent to a number of neurologists and the various diagnoses ranged from “migraines without a headache”, “BPPV”, “a side effect of reflux medication (which resulted in a fundoplication) and “an anxiety disorder with imaginary symptoms”.

Not to be deterred, I began reading the medical literature and happened to find a condition with symptoms similar to my own. I was recommended to see a neurologist who understood my concerns and referred me to the Balance Disorders and Ataxia Service at the Royal Victorian Eye and Ear Hospital. I was not surprised when I was diagnosed with CANVAS. Even though it is incurable, a definitive diagnosis lifted my spirits. I threw my walking stick into the cupboard (but not into the bin because I knew I would need it as the disease progresses) and took up Tai Chi and Qigong. That was three years ago and fortunately I’m still not using the stick. I try to walk as much as possible and no longer worry what people may think as I stagger along the path! People frequently ask me what it feels like and when I ask them have they ever walked around a trampoline in flippers they look quite agog. But that’s what it feels like all the time, except some days it’s a lot worse than others. I also have limited use of my hands and can no longer write, so the computer is a godsend. It’s difficult to read so I listen to audio books. Tucking in bed sheets is aided by a long shoe horn!

Last year I decided to travel while I was still able; two and a half months in Europe and two and a half weeks in Myanmar. One of the highlights was ballooning in Myanmar, in spite of the difficulty of climbing in and out of the basket. I’m sure my usually positive attitude is due to the great support I receive from the staff at the Royal Victorian Eye and Ear Hospital. The neuro-otologist, the physiotherapist, the speech pathologist and technical staff, to name a few are always eager to offer their support. I felt that my temporal bones, brain and spinal cord donation for medical research were the least I could do to support the work of this wonderful team.