Welcome to the BeatTN website. Below is my story and my personal motivation for starting this charity.
"I can remember the exact place I was when it first started. In 2001 I was on a holiday of a lifetime in Malaysia. As I crossed a road, I was hit by a searing lightning bolt of pain on my jaw. A pain so fierce it knocked me to the floor. I looked up to see a bus heading towards me, it didn't matter, I was paralysed with pain. The bus stopped.
I cut short my holiday of a lifetime and immediately flew home. At home, I started years of false diagnosis that led me through dentists and hospitals. I had all my wisdom teeth removed under general anaesthetic, specialists claimed that bruxellisation (grinding of teeth) was causing me to have “muscle spasms”, another specialist claimed it was stress and it was “in my head”, others ruled out Trigeminal Neuralgia and told me it was “atypical face pain” and I would just have to “deal with it”.
That was until one day, standing in The Walton Medical Centre in Liverpool, looking at an MRI scan someone pointed and said “There you go, it’s Trigeminal Neuralgia”. The strange feeling of elation as someone was able to tell me the name of the beast that had caused so much agony, caused so much self doubt and caused me to travel so many miles.
The situation permanently confused by the strange pattern of pain. I would have pain, that would get worse, then completely disappear, with no warning; at one time for over a year. Ah yes, maybe they are right, maybe it is all stress. Then ZAP! Like an unwanted friend it would be back. Except this time, it would become more painful, stay a little longer and go away for shorter periods until eventually it stayed for good (or should that be “bad?). Medication would help, initially, until again, the pain got worse and I was taking drugs that would stun a small horse. I could barely speak my name I was so medicated and the pain, goodness the pain. Why was I taking these drugs?
There is no worse pain.
I couldn’t eat, I couldn’t talk (I resorted to writing messages to avoid talking), I couldn’t smile, I couldn’t swallow, I couldn't move, I couldn’t shave, I couldn’t have anything touch my face. Even without doing any of these, the pain would be too much. I had to give up work and give up my friends. I had to give up life. How can people let this happen in the modern age? More so, how can people not even know about it? The anger. The pain.
This is until my operation. In 2004 I had an operation that gave me a life back. My Micro Vascular Decrompression (MVD) operation involved placing a piece of Teflon sponge between my nerve and my blood vessel. I woke up and there was no pain. NO PAIN! I could talk to people, I could actually smile at the thought of it! An absolute miracle.
Scarred physically, people could see what had happened. But scarred mentally, people couldn’t see that every twinge, every tooth ache I feared that my pain was back. After a number of years this subsided and I began to believe that I had finally shaken off my demon forever. I had an amazing time. I visited Australia, New Zealand, Canada and more importantly got married and had the two most amazing children.
Life is good.
Then, in 2014, I was again knocked to my knees in pain. It was back. But how could it be? I was cured? I had 10 years, why now? Why me? Surely, in ten years, there’ll be new treatments, more knowledge, more refined MVD? As I searched the internet, I found the same websites I found 10 years ago, the same treatments of ten years ago, the exact same drugs as ten years ago. How can this be, how can “the most painful condition known to mankind” go un-researched? Worst case scenario I will have to have MVD every ten years? Even this hope was quashed quickly as soon as I spoke to my Neuro Surgeon. It is not necessarily viable to repeat an MVD, and if you do the success rates are low and the time before symptoms return are equally depressing. My wife and I came out of the meeting with the Neurosurgeon and sobbed. We cried at having every hope dashed and slowly bearing up to the reality that I will travel the same path again but this time, with no relief.
I simply cannot cope with the thought of this coming back. I cannot cope with the thought of not reading my children a bedtime story, or kissing them, or them kissing me. I cannot cope with them not knowing ME but instead them knowing what TN makes me. I cannot cope.
I cannot let this be my life, my story can’t end here. There’s an air of “this is how it is” amongst the existing medical profession but I can’t let that be. I NEED to have hope. I need to have hope that my children will know me and not a twitching, wincing zombie in the corner.
The Facial Pain Research Foundation gave me hope. They are looking for cures and are looking for a cure in attainable timeframes (by 2020). Maybe I could cope for 5 years, my children would then be 9 and 11 and I would have time for them to know me and me to be there for them.
So, out of a mix of anger, desperation and hope I’ve decided I have to try something. With my ever amazing family I set up a UK based charity to raise money to push for a cure, pure and simple. In order to do this, I will need to raise awareness but make no mistake, my aim is to find a cure and to be able to give people their lives back. At present, The Facial Pain Research Foundation are the only people that appear to be looking at this but I am open and hopeful to the idea that if we can raise awareness enough, other scientists may join the cause.
The Facial Pain Research Foundation has given me hope. So important. But hopefully they will also give me a cure, the REAL goal. I will do everything I can to help with the goal but will need all the help possible to do that."
Together we can find a cure. The journey itself will give "hope" to many sufferers like me, "hope" that there can be an end to this condition and, with the help of organisations like the Facial Pain Research Foundation, I'm determined that there will be an end to this condition.
I can't do this alone. Please join me in raising money, raising awareness and putting an end to Trigeminal Neuralgia, for good.
Thanks,
Stuart Weller
Chairman of BeatTN