7 years ago my biggest battle began with this special team in Oxford John Radcliffe OUH, led by an amazing and kind surgeon Mr Giel.
My first appointment I found immediate knowledge, understanding of the many individual bodies complications of T.O.S and more importantly, the harrowing journeys many sufferers face in their battle to find help as this opens awareness to trust issues , and the need to proceed carefully with the patient.
We agreed all non-evasive treatments first due to my fear of further damaging surgeries. I was placed in to the amazing skilled and knowledgable hands of Anne Alexander and Hester Bishop. They were both at my side through the hardest battles we faced on our journey together to tame T.O.S.
It wasn’t just the physical battle, we also had to work through the mental & emotional tolls created from the past fights to be heard and believed. This skilled and wonderful team knew this…
Anne, on our first appointment gently got me to talk and open up to all my symptoms, no matter how small or silly I felt they were! To admit my fears and trust issues without judgement, just compassion… I was finally able to speak all I was living through - The pain, slurred speech, mobility, vicious headaches, racing heart but, what was more amazing was Anne and Mr Giel explaining the headaches and slurred speech issues, though rare, had been voiced by other T.O.S sufferers!…I was not going insane! It was all real!
Anne had also seen that through the years of fighting TOS and the curveballs it threw at us through treatments, that I had grown to hate my body as it felt it was always punishing me with pain no matter what I did - Damned if I do, Damned if I don’t - She understood what was happening with my emotions towards my body and at an early appointment brought a medical book with clear illustrations for me to be able to finally see the vast area, brachial plexus nerve system, muscles, ligaments and ribs all being affected! I will never be able to thank her enough because, for the first time ever, I could clearly see and understand how much was not working and finally grasp the serious trouble my body was in. Anne and Hester continued this through the years we fought TOS, helping me learn to no longer hate my body but, actually, be in awe and respect of it’s ingenuity, trying to find a way to work around the disability!
All of these little victories were a huge step forward with the biggest emotional breakthrough happening with no warning…I was discussing an issue with an exercise when in the blink of an eye and totally against my stubborn character, I just began sobbing uncontrollably as years of fighting for help rolled out of me with every tear and, in its space, was replaced with hope! Anne sat at my side throughout, just giving me comfort and strength till the last tear had fallen and then simply looked at me and said, “About time! I’ve been waiting for you to finally let go, Well Done!”…I realised that moment how right she was, the past needed letting go so I could be free to focus forward to the future!
This last bit of part 2 , I have thought long and deep whether to share but, realised it was such an important part to why I so desperately want to raise money and thank this amazing team and to also, bring awareness to the true evils of TOS and pain…
After a seriously intense appointment where my surgeon had to push areas beyond limits to find pieces to an extremely complicated puzzle and then a long journey home, the pain crescendoed in one awful, dark and scary moment…
My body became stuck in an endless tunnel of unbearable levels of pain raging through my upper torso to my head where movement and sleep were impossible, begging and praying the pain management would kick in soon…It Didn’t!!…Void of any awareness of anything existing outside of the pain to the point of one single moment in time at my next dosage, numbly staring at the tablets, mind in a hollow void with 1 simple thought, ‘No more pain’…Thankfully within a split second horror replaced this thought and when I was physically able, and sheer panic, I rang my team pleading, “We need to stop, we need to stop now! I can’t do this anymore!”… Hester was there that day and knew instantly this was not me. We spoke on the phone without time limit, processing through my horror, shock and anger as I love life, my family and have many dreams I want to achieve!…How is this possible?! How can pain take me this close to losing the life and people I LOVE!!!
Hester moved fast and got me to Oxford for a face to face where they would help me understand what happened - Pain can be dangerous, deadly and truly blinding - Fear hit me as I realised and voiced my grave concerns to my surgeon and team… “As years go on and I get older and worn out with the constant pain, will I always be strong enough to see what is happening? Will the pain blind me so much that it will be too late to see?!”… This was the moment it was realised by all, the tide had turned and my life and future was now riskier than the surgeries needed….
Now, the plan was preparing for major invasive unknown surgeries around my brachial plexus and neck…(The final part)
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