If Only…Reflections of a Patient with Advanced Glaucoma

Shannon Davis was just 43 when he was diagnosed with legal blindness due to advanced glaucoma. The eye examination he had that day was the first he’d ever had and one that would change his life – and the lives of his young family – forever.

Now, with the realisation that eye examinations are about much more than simply being prescribed a pair of glasses, Mr Davis wonders why Australia’s health industry isn’t putting more effort into building awareness about preventative eye care. And, he’s keen to help turn that around.

With no known family history of glaucoma and no awareness of any personal vision deficit, Mr Davis was oblivious to the need to have his eyes checked. A picture of health, he watched what he ate, visited his dentist twice a year, worked out with a personal trainer three times a week, and even ran half-marathons.

One thing I do know is that we need to do much more, in business, in government and in health, to create awareness of eye disease

It was only when he looked around and noticed that his two sisters wore glasses, as did many of his friends and colleagues of the same age, that he wondered why he’d gotten away without wearing them and whether he should have a vision test.

In August 2020, Mr Davis, a partner in a leading professional services firm, decided that’s what he’d do.

“My wife and I walked into the optometry practice in Bondi Junction that I thought had nice frames. While we waited, I spent time browsing frames and had no idea what was about to unfold.”

Along with a vision examination, Mr Davis’ optometrist performed a comprehensive eye examination which included an intraocular pressure (IOP) test.

To Mr Davis, who at the time knew nothing about glaucoma and was completely asymptomatic, the next few moments were impossible to wrap his mind around.

“I was told my IOPs were in the high 40s, and I’d sustained permanent and progressive damage to the optic nerve. At the age of 43, my vision was such that I needed to see a glaucoma specialist urgently. It was a massive shock.”

Mr Davis was referred and booked in to see an ophthalmologist the following day.

The news just kept getting worse.

“It was a lot to process. I discovered I had a chronic disease that was already at an ‘end stage’ in its progression. I had irreversibly lost a large amount of my vision in both eyes and had very little vision left to play with for the remainder of my life. 

Furthermore, there was no prospect for medical improvement in my vision whatsoever… I was shocked, confused and I feared for what the future held.”

Mind games

As we know, glaucoma initially effects peripheral vision and, because it’s the central vision that we mostly rely on for day-to-day life, early loss of peripheral vision usually goes unnoticed. This was certainly the case for Mr Davis.

“Your mind does a phenomenal job of compensating for the damage to the optic nerve by filling in the blanks on what it thinks should be in your peripheral field of vision. So if I’m looking at a blue sky, my visual field won’t extend to the periphery but my mind will tell me I’m seeing the entirety of a blue sky.”

Despite the advanced stage of his glaucoma, Mr Davis had – and continues to have – a residual amount of central vision, which helps him to function. Holding on to that vision is the key to maintaining quality of life.

“To protect my vision, my ophthalmologist immediately started me on eye drops and then performed multiple laser procedures, however these failed to halt progression. A year after diagnosis, he recommended a double trabeculectomy, advising me that this was the gold standard treatment and indeed, the only option,” said Mr Davis.

After much consideration, and having reassured himself by seeking second and third opinions, Mr Davis decided to have surgery on his right eye first. Being the better eye, he hoped that lowering the pressure would give him the best chance of maintaining his remaining vision ahead of surgery on the left eye.

“The decision to choose my right eye first was harrowing! Particularly because of the 10% risk of losing some or all of my vision in the operation. It was also devastating to come to terms with one ophthalmologist’s view that my left eye would go fully blind regardless of the surgery.”

Mr Davis said Glaucoma Australia was an extraordinary support during the entire process.

“Right from my diagnosis I would receive calls from orthoptists or ophthalmology registrars, checking in to make sure I was coping, or to answer questions and support. The level of care and attention they provided made me assume Glaucoma Australia is a large organisation – little did I know it’s a group of eight employees with few resources, supported by volunteers. They do an incredible job.”

Making change

Immersed in a corporate career spanning 25 years, and with two sons – aged four and nine months – Mr Davis says his diagnosis forced him to reassess his life and make significant changes.

“From the moment I was diagnosed I felt the impact on my life.

“My wife became the family’s sole driver, which is increasingly demanding with small children as their interests grow.

“I needed to use two different eye drops four times each day; which sounds simple but it took up to 1.5 hours every day.

“I found it increasingly difficult to read the faces of people, which in turn made it more difficult to gauge responses in a conversation or presentation. I had issues with lighting, glare, contrast, stairs and walking on uneven surfaces. Spending time using screens was fatiguing.

“One day I walked up to someone, believing I knew them. I said hello then realised their confusion. I didn’t know them at all.”

Mr Davis worked with an occupational physician, an occupational therapist and ophthalmologist, and was clinically assessed as being totally and permanently disabled and unable to work. He medically retired from the partnership of his firm. Having accepted his fate in having to step back from work, Mr Davis said the future became more straightforward.

“I now know I’m going to maximise my remaining sighted time with my wife and sons, seeing and doing as much as we can together. I’m also taking time to prepare for further loss of sight by adapting my home and trying to learn to use technologies that will enable me to maintain my independence. As an ophthalmologist once told me, prepare now for your worst day so that everything becomes straightforward.

“I also want to volunteer my time, my experience as someone living with advanced glaucoma, and my expertise as a business executive to raise awareness and help others who find themselves in my situation.

“Whether that’s mentoring someone who is about to have a trabeculectomy, or helping Glaucoma Australia evolve community education, I know that while I have a lot to learn, I can contribute a lot as well.”

If only I’d known

“One thing I do know is that we need to do much more, in business, in government and in health, to create awareness of eye disease.

“All of my male friends and colleagues know about the need for prostate examinations, the women know about the need for breast cancer screening. But I would say just one in ten understands the importance of a regular eye examination. Most, like me in the past, believe going to the optometrist is simply about getting a pair of glasses.

“But just as we are badgered to visit the dentist every year, I believe the community must be badgered to have their eye health – not just their vision – checked. And if that leads to more people rolling up to the ophthalmologist with early signs of disease who don’t need treatment right now, so be it – the cost of having them reviewed and managed early is far less than the cost to families and the economy of managing blindness down the track.

“This is about changing the messaging so that people understand that a simple eye test can prevent blindness. It can save people with eye disease – and their families – from going through the massive life changing experiences I am going through… I often think that if I’d been to have my eyes examined two years earlier, I wouldn’t be medically retired, unable to drive and having to work so hard to preserve my remaining vision.

“I want to see health insurers pushing members to have regular eye examinations, to see optometrists explaining what they’re doing and why when they do a pressure or visual field test. I believe thorough eye examinations should be a part of every person’s regular comprehensive health check, and that when people have their vision tested for their driving licence, they should be reminded that whether or not they can see the 20/20 line is just the tip of the iceberg when it comes to monitoring their eye health. That’s the only way we are going to reduce the impact of glaucoma and other eye diseases.

“For me, I have made my peace with the knowledge that my condition may continue to slowly deteriorate. I realise the prognosis is poor in that my disablement is permanent and there is no prospect for any improvement in my vision. It’s now about understanding I can lead a full and enjoyable life with significant disability, while at the same time knowing it will be different.”

This article has been republished courtesy of www.mivision.com.au