Dear Friends and Family, Clients, Colleagues, and those who I’ve met along my journey that I may have helped in any way:
As many of you may know, I’ve struggled with my health for many years now – mainly my non-existent sleep patterns but also chronic headaches and migraines, poor memory, brain fog and fatigue. My natural sleep pattern would much rather I be awake for 24-48 hours straight and then asleep for a day or two solid. Much to the annoyance of family and loved ones, it's mostly impossible to wake me up until my body allows me to be awake!
I had to leave full time work back in 2008, as I was simply not well enough to wake up each day and function properly whilst trying to conform to a 9-5 working day. As a result, I went into bar work for a few years and started freelancing as a website developer - the flexible hours suited me much better, although I often ended up spending 16hrs+ a day in front of a screen, which can’t be good for anyone!
In 2010 I started to suffer from a series of collapses, 13 times that year I believe. I either woke up in an ambulance on route to A&E, or in the middle of a street surrounded by police and worried passers-by... even once at the bottom of the kitchen stairs of the pub I was working at, being slid onto a spinal board with morphine being injected into my arm. Kitchen staff continued to pass plates of freshly cooked steak over my head to hungry customers (rightly so, nothing worse than a cold steak). I never did get my end of shift meal that night though.
Doctors could never quite get to the bottom of it. They tested me for everything, I was even implanted with a 'reveal device' in my chest to monitor my heart for a couple of years to rule out dodgy ticker. Regardless, none of the tests could ever pinpoint what was causing the black outs, sporadic sleeping patterns, migraines and more. Luckily the blackouts subsided and I learnt to live with the rest of my symptoms, did what I could to minimize the pain, stopped moaning and just got on with it, working as much as possible. This did mean at times I became a bit of a social recluse, missing out on many family and friends’ events and weddings – I was either too ill to make it, or I simply woke up 3 days late!
Over the last couple of years symptoms have worsened. In 2015, I think I was rushed in by ambulance a couple of times again, and over the last 2 months a further three times. I’ve started to get temporary vision problems, extreme pressure in the head, lack of sensation on half of my body at times, and a few weeks back I had what felt like a mini-stroke. I couldn’t move much of the right side of my face for about a week, and struggled to remember where I had been. Since then I have been suffering with uncontrollable burps and hiccups, balance and gait issues, nausea, worsening cognitive and memory issues, and I’m barely managing to look after myself at the moment.
Once again, seeking answers, I reached out to a few of the top neurosurgeons around the world and sent them my MRI scans to see if they could spot anything that the UK doctors where missing. Finally, a few days after I had the mini-stroke, one of the surgeons from Germany called me and confirmed my fears – I have a rare type of brain tumour called a Pineal Region Cystic Tumour, right in the centre of my head.
This came as fairly good news to me in a way, as I’ve been studying these Pineal Cysts and truly believe mine is the root of many if not all of my symptoms over the last 10+ years. To have confirmation of this and to know that help is possible comes as a massive relief. It seems these Pineal Cysts truly are a rare and poorly understood type of tumour, with many doctors quick to dismiss them as incidental findings despite their size (mine is 20mm). There are only 20 or so brain surgeons around the world who are prepared to operate on them, and who specialise in them. The good news is this is slowly changing, some of these world-renowned surgeons are currently writing research papers after doing 300+ surgeries, to help educate neurologists globally.
I’ve found a great support group of over 1,000 patients with the same problem all around the world, and as well as many of them helping me along my journey, I’ve got to know many who have had their surgeries over the last few months. I have seen them all make great recoveries, with many if not all of their symptoms fixed after the recovery period. Some in Australia, many in America and Canada, and a handful from England and Wales. Similar to myself, they have all struggled to find a doctor who understands the issue; many have gone several years being misdiagnosed and prescribed incorrect drugs which have made their situations worse, before finally finding the help they desperately needed. I’ve seen several pay over $150,000 for their surgery, depending on the location and surgeon.
Dr. Henry Schroeder of the Greifswald University Hospital in Germany has offered me an amazing price of €24,000 for my surgery, and wants to get the cyst out as soon as possible. I’ve talked to several of his previous patients who have had their Pineal Cysts removed, and am confident he is the surgeon for me. I’m flying there to meet him on the 4th of October, and am hoping to have surgery before the end of the year.
My most recent MRI Scans (screenshot attached) show that it has developed into two separate cysts, and is now starting to develop further into 3 or possibly 4 separate cysts. It’s location and size obstructs the proper flow of CSF (Cerebral Spinal Fluid) from and around the ventricles of the brain, and compresses vital parts such as the tectal plate, the internal cerebral vein, vein of Rosenthal and vein of Galen, causing a wide array of different symptoms. I really can’t wait much longer to get this out, and know surgery is my only option at this point.
Unfortunately, with my continuing issues and gradual cognitive decline over the past few years, I’ve not been earning much at all and am in no position to be able to afford this, hence the fundraiser. So I please ask that if you can, please do donate whatever you can afford, even if it’s just a tiny amount or maybe what you would spend on a Friday or Saturday night out drinking! If you are not in a position to donate, I would really appreciate a 'share' and just send me some positive thoughts and energy :)
The money raised will be used for my surgery in Germany, flights, travel and accommodation, as well as anything I may need during my 3-6 month recovery. Anything over and above what I need may be passed on to other people in the same situation or towards helping raise awareness of this rare condition. I intend to make a full recovery and be back to full time work as soon as possible, but would also like to dedicate several months to helping other 'Cysters' as we call each other. I would like to build a custom website to help everyone track their symptoms, the size and growth of their cysts, help them find their closest doctors, along with advice and support for family members etc.
I would like to say a massive thank you to everyone who has supported me so far, be it fellow Cysters with their kind words and advice, or friends in Mallorca who have loaned me money to make sure I’m eating, checked in on me to make sure I’m ok. Those who have given me lifts to and from hospitals and airports, and everyone who’s been sending me positive energy – I really do appreciate all of you, and I’m sorry If I’ve not said it to you personally... you know what my memory is like! Oh and a massive thank you to ‘The Website Design Company’ who are taking over many of my clients whilst I am unable to work, making sure their websites stay functional and at the top of Google! And a thank you to all my clients past and present for being so understanding of my illness.
All the best, Gareth.