Lauren Bates was diagnosed with acromegaly in 2015. When she had an operation to reduce the tumour on her pituitary gland, her right eye contracted neurotrophic keratitis - a rare corneal disease. Over the course of six years, Lauren went through three corneal transplants, and a Gundersen Flap procedure. Here’s her story.
They say you don't know how important something is until it's gone.
Like everyone else, I thought "sure," and carried on with whatever I was doing... but now I often think about that short phrase.
See, before my diagnosis, I took my perfect eyesight for granted. Nowadays, however, I'm forever grateful to have one healthy eye.
My acromegaly diagnosis was a complete shock
When my doctor diagnosed me with acromegaly, I was stunned.
I shouldn't have been. My body's growth hormone had been running rampant for almost a decade. I was in and out of the GP's office before I decided to take an extended trip to Australia.
A year later, I returned to the UK, feeling more unwell than I ever had in my life.
When my friends and family saw me, they were shocked. The physical changes had happened so gradually, I was able to kid myself they weren't happening. But they noticed the symptoms straight away.
Two months later, I was diagnosed with a rare condition called acromegaly. This condition means that my pituitary gland produces too much growth hormone. That explained why my shoes no longer fit and why I couldn't get any rings past my knuckles.
Related: I Am Not My Condition – Acromegaly and Me
I remember thinking I could take a pill, and everything would go back to the way it was. I had no idea how serious the diagnosis was.
Operations on my pituitary tumour damaged my right eye
In March 2015, I had endoscopic (also called transsphenoidal) brain surgery to reduce my pituitary tumour. The excess of growth hormone is caused by a noncancerous tumour in the pituitary gland called an adenoma.
Large tumours, such as mine was, can cause further complications to acromegaly's symptoms. If the tumour presses on certain nerves, for example, you can get headaches and vision problems.
Yet, after surgery is when the problems began. My right eyelid began to close as my levator palpebrae superioris (LPE) muscle completely lost the capacity to hold it open. This was an excruciating time - the eyelid took about three days to fully close, then remained that way for three months.
After those three months, the muscles around my eye started to gain strength again. My eyelid opened but remained somewhat droopy.
Two weeks after my endoscopic surgery, I had my second craniotomy to reduce my macroadenoma. A macroadenoma is the type of tumour I had on my pituitary gland, while a craniotomy is the removal of part of the skull to expose the brain.
While I was in hospital recovering, my right eye was constantly closed. Nurses had to tend to my eye three times a day with ointment. One day, when the nurse tried to administer the eye drops, something seemed very wrong.
A big, grey cloud was hovering over my eyesight, getting closer and closer. My vision in my closed right eye was blurring so rapidly, it was like the cloud had directly settled in my socket.
By lunchtime, my vision in my right eye had been replaced by darkness. I had completely lost sight in that eye.
My optic nerve had been severed
At first, it was somewhat of a mystery. The doctors had no idea what had happened. Meanwhile, I was beside myself, thinking exactly the same would happen to my "good eye".
I was assured that wouldn't be the case. Eventually, I comforted myself with the idea that my vision loss was temporary and that it would come back.
The hospital took me to have a magnetic resonance imaging (MRI) scan, where the mystery was solved. My right optic nerve was severed in two places, meaning I had little to no chance of regaining sight.
So, when the eye opened again three months later, I was used to only using one eye. The length of time the muscles had taken to strengthen had worked as an adjusting period. By June 2015, I was back behind the wheel of my car and living life.
Coping with reoccurring eye problems
Unfortunately, this period of peace was short-lived.
In August of the same year, my right eye became increasingly red, inflamed and angry-looking. My consultant referred me to the eye department, and I was swiftly informed that I'd scratched my cornea.
The team prescribed me some eye drops, and, equally swiftly, I was sent on my way.
The next few weeks were filled with trips to casualty as my eye became increasingly inflamed. I was diagnosed with another condition called neurotrophic keratitis (NK) - a rare disease in the cornea caused by a lack of trigeminal activity.
Related: 3 Tips to Come to Terms with a Rare Diagnosis
NK explained the complete lack of sensation in my right eye. You could have poked me in the eye, and I wouldn't have known about it! The NK was a direct result of damage to my trigeminal nerve from my pituitary tumour.
The scratch never healed, despite various medication and amniotic membrane treatments. Eventually, that scratch progressed into an ulcer, which meant I needed my first cornea transplant in April 2017.
My history of eye problems kept repeating itself
History repeated itself again in May 2020. I had another scratch on my cornea, despite using the prescribed eye drops every hour of every day.
Because of the neurotrophic keratitis, the scratch wouldn't heal. Within a few weeks, the scratch became an ulcer and perforated. I needed yet another cornea transplant.
... And another one three months later. When hearing the news for the third time, I was beyond devastated. This cycle was ruining my life. I couldn't go swimming, which was my favourite form of exercise, go to work or even socialise.
At that point, I was terrified of scratching my cornea again and avoided everything that could make life bearable. As my cornea had no sensation, I wouldn't have any idea if something went in my eye. I wouldn't know to blink it out the way I would with my working one.
Yet again, I had the same treatment. I deluded myself one last time that this would be the final operation.
Of course, the operation didn't heal, so I opted to have something called a Gundersen Flap procedure. This was another surgical procedure for corneal disease. This time, however, the surgeon would remove the damaged section of my cornea and replace it with a "flap" of my conjunctiva (the transparent membrane that covers the front of the eye).
And... that didn't work either. Within several days, my diseased eye absorbed the conjunctiva that was placed over it.
Making a scary decision
It was a terrifying choice to make but the only logical way to move forward with my life. So far, my right eye has caused more problems than my pituitary tumour and acromegaly combined.
Related: Living with Acromegaly – My Condition in Snapshots
I was at the end of my tether, so I opted to get my eye removed completely. Soon after making enquiries and appointments, I was over the moon to hear that my evisceration surgery would happen in three weeks!
And now, 10 days post-operation, I am relieved. I'm relieved that my life won't revolve around hospital appointments for my eye and that I soon can get on with my life. I should receive an artificial eye in a few months. I can't wait to go swimming again.
NPS-IE-NP-00330 October 2021