“I had no idea that a brain tumour could cause you to lose your eyesight”

Before you went for a sight test, had you experienced any symptoms and how had this affected you in day-to-day life?

Patient Carla Hempe, 35 (CH): My sight didn't feel right. I thought it was getting worse because, being pregnant, I found that with every pregnancy my eyesight just got that little bit worse. I assumed that my prescription needed to be a bit stronger. I was planning on getting an appointment, but I left it for a little while, being busy with my other children.

I remember being at home one night when I covered one eye and looked at the TV. It was like there was a bit of it missing, or a cloud over some of the words. I covered the other eye and it wasn't there. I realised that it wasn’t both eyes and that didn’t seem right.

Because I was getting headaches as well, I rang my doctor. I explained the headaches and the fuzzy feeling in my vision. The doctor explained that the local Specsavers has something called a minor eye conditions service (MECS) and that it might be worth going there.

What did the optometrist find, and how did they explain the next steps to you?

CH: I booked an appointment and they did all the normal things you have for a regular eye test. When he called me in, the optometrist said: “I think there's something wrong with the visual fields test; I think the machine might not have been working. Can you go back and redo the test?”

I redid the visual fields and when he called me back he said that the test was showing the same kind of results – there was quite a lot of visual field missing on my right eye. He said: “I’ve never seen this before.”

At that point, he couldn’t see anything wrong with the health of my eye but because he couldn’t see what was causing all this loss of peripheral vision, he wanted to send an urgent referral to the local hospital.

I certainly didn’t expect it to be what it was. You know those things happen, but they happen to other people. All I was concerned about was how I was going to get my kids to school. 

Did you have to undergo further treatment and what has been the outcome?

CH: At the hospital they checked my vision. The registrar who looked at the results said there was nothing wrong with the health of my eyes to be causing that amount of vision loss. The only thing that she could think of was that it would be further back, so the optic nerve or brain.

They referred me for an urgent MRI, which is supposed to happen within two weeks. Unfortunately, in my case, that didn't happen because, as I was pregnant, you have to have certain forms which they didn’t have, and so it was about eight weeks by the time I had my MRI.

It was at that point that they found what would later be known to be meningioma. A later MRI revealed the meningioma was attached to the membranes surrounding the brain and compressing my optic nerve, and that is what was causing the sight loss. 

The neurologist rang me and explained that they'd found a mass. They weren't sure if it was a pituitary tumour, or a tumour somewhere else. In the meantime, I met with different specialists and they wanted to check my sight again because they knew it was affecting my optic nerve. This time, when it came to visual fields I couldn’t actually take the test. My peripheral vision was at 32%, but by this point I had also lost my central vision to the point where I couldn’t see the point I needed to focus on. The consultant registered me sight impaired.

On 4 April I went into theatre to have the tumour removed. In eight weeks I had gone from being able to see, though a lot of my peripheral vision had gone, to having lost almost all of the vision in that eye.

They explained that the surgery wasn’t to give me my sight back, but to stop me from going completely blind.

I couldn’t see out of the corner of my eye so when crossing the road I would have to turn my head, but even then because I had lost the central vision as well, it would be really fuzzy and I couldn’t see clearly whether car indicators were on or off. I started to feel very unsafe crossing the road with my children to get them to school.

When filling my son’s milk bottles, I couldn’t see the water level. I couldn’t watch the TV properly because it was blurry and I couldn’t read any writing on the screen. There were quite a few everyday things that became very, very difficult.

In eight weeks I had gone from being able to see, though a lot of my peripheral vision had gone, to having lost almost all of the vision in that eye

After the surgery I instantly noticed a difference in my sight. Over time, it has started to deteriorate a little, so there are still bits missing, but the last letter I received showed that my right eye went up to 96% after surgery. My results changed drastically, which is just incredible.

It’s amazing. I have always worn glasses and now, when I have my glasses on, I can see the TV; I can read. I can fill everyone’s bottles up. It’s almost like it never happened, but obviously it is something I can never forget.

At my last check-up they confirmed that if my sight stays like this and doesn’t get worse, they’re going to be able to reverse the sight impairment registration.

Have your views on the importance of sight tests and eye care changed as a result of this experience?

CH: I never used to have my eyes checked that regularly. If I noticed my sight was changing I would get an appointment and find out what my new prescription was. Now I know it’s so much more than just being able to read a book.

I had no idea that a brain tumour could cause you to lose your eyesight. It’s actually very common for all types of brain tumours, but it’s not something you think about – because you don’t have to. I think many people just think things will be fine, they’ll get their sight checked soon, or wait until things are less busy. People never assume that your sight can be affected in so many other ways than the things we all know about, like glaucoma or cataracts.

I’m definitely more aware now. If my friends mention something, I’ll encourage them to get their eyes checked. I like to share things on social media too, so even if one person reads it and remembers what I’ve said they might get their eyes checked. A lot of people leave things way too long – we’re all guilty of it – but if someone leaves it just that bit too long, they might not be able to get it fixed.

Now I know it’s so much more than just being able to read a book

How has the experience changed your life or affected you?

CH: It's changed my outlook on life. I always find the positives in a situation now. The tumour itself was not dangerous; I was very lucky that it was benign. But, I had to have brain surgery, a very serious 12-hour surgery.

It affected my family as well. We had to tell my young children what was going on because if something happened, they needed to have some awareness that things might not be okay.

It was frightening. My husband was petrified and I was pregnant at the time which added to our fears. But we came out the other end.

As horrible as it was, it's opened my eyes to how lucky we have been because I haven't got any side effects from the surgery and I have my sight back. I'm still here and I have lots to look forward to.

I probably wouldn’t expect to see this more than a couple of times in my career, so it really stands out for me

How has your practice adapted following COVID-19 to be able to meet the needs of your patients, such as in this case?

Wai Hang Sy (also known as Ivan), optometrist at Specsavers Eastbourne (WHS): We’ve been open for care throughout the pandemic and, even in the strictest lockdowns, we’ve triaged and seen people who have been suffering from symptoms like vision loss and headaches, amongst other things, as – with Carla’s case – there could be something seriously wrong.

We’ve followed Government guidelines throughout to keep patients and staff safe, including wearing personal protective equipment and masks, and making sure everything is sanitised between patients. So when we saw Carla in December 2020 we carried out her MECS appointment as we normally would, with those protections in place.

What did you identify during the sight test and what was your reaction?

WHS: During Carla’s sight test, I noticed that she was turning her head to look at me and other points in the room. When I did her fields test, she was missing quite a lot on her right side, and had one quadrant missing on her left side. Her vision was a little bit reduced overall, but it was the fields test which raised concerns for me as it was clear something unusual was going on.

Her results were really worrying, and something that we do not see very often. In fact, I probably wouldn’t expect to see this more than a couple of times in my career, so it really stands out for me. I knew she would need to be referred to the hospital for further investigation.

How did you approach explaining what you had identified/suspected?

WHS: Breaking bad news to patients is always really difficult, but is sadly part of the job sometimes. Carla knew there was a problem as she was struggling with her vision, and I explained that I would be referring her to the hospital eye clinic.

As what I found at the sight test was so unusual, while there were some things it could be, it was impossible to be completely sure what was going on at that stage. It clearly needed further investigation urgently.

Good communication really matters, especially at what can be quite a scary time”

What were the next steps that you took, and what was the significance of these steps to this case?

WHS: I uploaded the results of her optical coherence tomography scan and fields test to Opera, referred her to Eastbourne District General Hospital, and followed up to make sure they had received it. They obviously reviewed her case and carried out further investigations, which led to her diagnosis and treatment. While Carla knew something was wrong, patients can sometimes be completely unaware of potentially serious issues – which highlights why regular eye tests are so important.

When did you hear about the results of your referral and how have you been involved since?

WHS: We don’t always hear back from MECS referrals – other than when we check that they have been received – and in this case I only heard about what had happened to Carla after I saw her much later. I had known something was potentially seriously wrong during her test, but I was unaware of her diagnosis. It was awful to hear that she had been through such a difficult time, but great to hear that she had received treatment and is now in a much better place, albeit with some ongoing visual challenges.

What would be your three top tips to other practitioners when making a referral?

1. If in doubt, refer
2. Always make sure the referral has gone to the right place, that it has been received and is being followed up
3. Always explain to the patient how the process will work after the referral, as, for example, the local hospital has been operating a triage system due to COVID-19. Good communication really matters, especially at what can be quite a scary time.

This March, The Brain Tumour Charity will be recognising Brain Tumour Awareness Month, aiming to raise awareness of the signs and symptoms of the disease, and funds to accelerate research. For more details on the fundraising challenges, or the charity’s awareness month activities, take a look online.