“Peter’s” Journey


The last few weeks have been a little crazy to say the least.

Being diagnosed with a chronic disease stemming from a tumour found at the base of my brain was the last thing I was expecting to hear on 7th Dec 2023, but that is exactly what happened. Below is a story about my journey with Acromegaly.

In October 2020, as I embarked on the daily grind of working from home, a subtle but sinister sensation infiltrated my routine – pins and needles in both arms. At first, I dismissed it as a consequence of my makeshift office at the kitchen table, but as the days progressed, it became clear that this was no ordinary tingling. It was a precursor of a journey that would unravel over the next three and a half years.

The initial pins and needles morphed into a symphony of discomfort – hand pain, inflammation, trigger thumb and finger, and the dreaded stiffness that greeted me each morning. Concerned, I sought medical attention, leading to nerve conduction studies that unveiled a diagnosis of bilateral carpal tunnel syndrome. By February 2021, I found myself on the operating table at St Luke’s Hospital in Sydney, undergoing carpal tunnel release surgery. The procedure seemed promising, and the pins and needles temporarily ceased. However, little did I know that this was merely the calm before the storm.

As days turned into weeks, the initial relief gave way to a resurgence of symptoms. My hand therapist, initially optimistic, found herself confounded by the persistence of inflammation and discomfort. The medical maze deepened, leading to more scans, blood tests, and a regimen of steroids and cortisone injections. Yet, the root cause remained elusive, leaving a trail of unanswered questions. Day after day I carried out my hand rehabilitation exercises without fail, only to be greeted by the same discomfort and pain over and over again.

Around early 2022, a new chapter unfolded. Shooting nerve pain down my left side emerged as a troubling addition to the narrative. An MRI of the neck brought forth the diagnosis of Stenosis, shedding light on a previously unknown aspect of my health. The alarm bells grew louder – how could a fit, young, and healthy individual, participating in about every sport under the sun, find himself entangled in a web of seemingly unrelated ailments? Were they related? Or was this just mere coincidence?

As I moved in 2023, my journey continued to take unexpected turns with the emergence of more and more peculiar symptoms. My hands began to grow larger and more swollen, my feet followed suit, with a noticeable two-size increase in shoe size. Rings that once adorned my fingers no longer fit, and knee joint pain robbed me of the joy of participating in sports I held dear. To add to the adversity, lower back issues emerged, with a CT scan revealing degeneration in my spine, characterized by my doctor as “the spine of a man two decades older.”

Following this were many other symptoms including vision changes, worsening obstruction of airways, poor sleep, dry mouth due to reduced saliva production, a deeper huskier voice, more oily skin, excessive sweating, skin tags, kidney stones, urinating frequently, the growth of polyps and cysts, low testosterone levels, plantar fasciitis in the feet, further joint pain, insulin resistance, headaches and short-term memory worsening – each new symptom added to the complex tapestry of my health struggles.

The diagnosis of rheumatoid arthritis soon followed, but scepticism lingered, especially among friends in the nursing profession. November 2023 marked a pivotal moment when my new rheumatologist suggested a Brain MRI to explore the pituitary gland. The results, delivered on December 7th, were a revelation – I had a chronic disease called Acromegaly, caused by a pituitary tumour at the base of my brain of considerable size 16x17x18mm (macro adenoma), a condition that had remained hidden in the shadows for at least four years.

I quickly researched the condition and found that Acromegaly was a rare chronic disease and hormonal disorder caused by excessive growth hormone production (GH) in the pituitary gland, leading to abnormal growth of bones and tissues, particularly in the hands, feet and face as well as many other serious symptoms. Acromegaly is almost always caused by a noncancerous tumour that develops on the pituitary gland occurring sporadically without clear genetic association. The condition is exceedingly rare with an estimated three-to-four individuals in every million being diagnosed each year. As I read every symptom and detail on the page, my jaw dropped with the profound realisation that I finally understood what was causing all the problems in my body for so long. At last, the pieces of the jigsaw had finally come together.

The initial shock of the diagnosis was profound, a feeling of the world collapsing around me. A panicked call to my partner was met with immediate and unwavering support. Fortunately, my family arrived for the Christmas holidays just four days later, providing a much-needed escape from the overwhelming reality as well as unlimited, unconditional support and love.

A few weeks later as I approached the cusp of my first endoscopic transsphenoidal surgery to remove the tumour in early 2024, I found myself in a place of calm acceptance. The mental and emotional rollercoaster had brought me to a point where I was ready to face the challenges ahead. I found myself feeling very grateful for the answers that had finally come to light, ending a prolonged period of uncertainty. The surgery now marked the beginning of my journey toward potential recovery and the possibility of reclaiming a sense of normalcy that had seemed distant for so long. It also represented a step towards a future where health and vitality may replace the shadows of uncertainty. On the eve of surgery, a wave of nerves washed over me, engulfing the next twenty-four hours in a torrent of fear and uncertainty unlike anything I’d experienced before. Gripped by the unknown, my mind conjured bleak scenarios – envisioning life without sight, grappling with brain damage, even contemplating mortality. In a gesture of love and precaution, I penned a letter for my family and partner, preparing for the worst. The next day as I bid farewell to my mother and partner at the hospital, struggling to contain my emotions, the nurses whisked me away, ushering me into the unknown.

The following hours were a tumultuous journey. Awakening in the Intensive Care Unit almost five hours after going under general anaesthesia, I found myself surrounded by a labyrinth of doctors and nurses, as well as tubes and pipes protruding from every part of my body. Despite the initial disorientation, it soon became apparent that I was witnessing the miraculous aftermath of a successful tumour removal. With a catheter in place, my body began to expel fluids at a remarkable rate of one litre every two hours as my pituitary gland, liberated from the grip of the tumour, commenced the process of releasing toxins that had held my body captive, riddling me with swelling and inflammation for the last four years. Despite the discomfort, there was an undeniable sense of awe at the transformation that was already unfolding. More good news soon followed with a clear Brain MRI result and confirmation that the entirety of the tumour has been successfully excised.

Today, a week post-surgery as I reflect upon this arduous journey, I feel reborn again as I continue to see improvements in my condition and symptoms day by day. I am struck by the resilience of my body, signalling that something was amiss. The diagnosis, though daunting, has brought such relief as well as a definitive answer to the myriad of issues I’ve faced. I have not been weak, I have not been delusional; rather, I am strong and ready for to fight and on top of that overwhelmingly impressed with my body’s ability to communicate that everything has not been okay for a long period of time.

As I look forward, I know this may not the end of my journey with Acromegaly and in fact may be only the beginning, but still a newfound sense of relief and gratitude has washed over me. Freed from the burden of uncertainty that had shadowed my every step for years, I want to embrace each moment with renewed vigor. As I navigate the road to recovery, supported by the unwavering care of medical professionals and the enduring love of family and friends, I marvel at the resilience of the human spirit. Every step forward, no matter how small, feels like a triumph – a testament to the indomitable strength within us all. With each passing day, I grow more determined to seize life’s precious moments and to use my experience to uplift and inspire others facing similar challenges.

In recounting my journey, I aspire to shed light on Acromegaly, an often-overlooked condition, and contribute to its understanding and awareness. I eagerly anticipate becoming a part of the Australian Pituitary Foundation, where I can connect with fellow individuals who share similar experiences. Being an identical twin within a set of triplet boys has even further uniquely marked my journey, offering a rare comparison point for the physical changes that have unfolded in my body over time. Together, we can collectively advocate for improved knowledge, mutual support, and greater understanding of this exceptionally rare condition.

Lastly I would like to send a huge thanks to the dedicated surgeons, doctors, nurses, rheumatologists, endocrinologists, and anaesthetists who not only saved my life but also guided me through this challenging journey with exceptional expertise and care. I also want to express my gratitude to my family, partner and friends for their unwavering support and love throughout this ordeal. As I move forward, I carry with me a newfound appreciation for the preciousness of life. It’s true what they say – your health is your wealth.