Lucinda was diagnosed with a Hemangioblastoma in 2015.
My neurosurgical story is long, terrifying and complicated, as I'm sure most neuro patient journeys are. But it's also beautiful and full of fortitude.
When I look at photos of a brain or those 3D models in doctors rooms I get goosebumps and an overwhelming sick feeling in my stomach. Of course life was cruel enough to give the girl with a brain tumour a phobia of brains. So when I think back to where my story started it makes me more than uncomfortable and slightly panicked.
I had suffered for almost half of my life with many debilitating symptoms that were eventually diagnosed as a Hemangioblastoma in March 2015. A huge benign tumour made up of hundreds of intricate blood vessels and attached to cysts had squashed my brain stem. I'd never known just how important a brain stem is, that it is very delicate, I had never thought of its purpose. My ignorance was bliss going into that surgery.
Before diagnosis my main physical symptoms were numbness in my limbs, ataxia, spasticity and increased muscle tone, tremors, dizziness, weakness, vomiting and of course headaches. Along with a long list of other symptoms, like exhaustion, anxiety and vivid dreams. I see Dr James Leyden, the kindest neurologist a girl could ask for when she has all of these terrible symptoms and is petrified of the answers. He gives me a neurological examination and after a mere few minutes with me advises I get an urgent MRI and asks to bring my family or loved ones with me when I return for the results. I sat in my car and cried, I couldn't comprehend what was happening and I was fearful of what the outcome might be.
I walk into his office with my family knowing whatever it was would not be good, but hoping for the best type of bad. My MRI results were on his computer screen and I could see straight away a massive white 'something' that I knew shouldn't be in there. This was a bad kind of bad news. The tumour was in a very risky location, almost completely crushing the brain stem, my life was very much in danger and he was unsure as to how much time I had left. My heart sunk, I hyperventilated, I shook, that was the worst day of my life. I didn't think it could get much worse until I had to explain all of this to my best friends and loved ones.
It was all systems go from that moment on. I had another MRI and an appointment with a neurosurgeon. Dr Amal Abou-Hamden was the only ray of sunshine through those dark days. She explained to me that the tumour was a Hamangioblastoma. AKA, a big blood bomb. It was going to be a challenging surgery, but her confidence reassured me. I stayed off of Google, I didn't want to know about said blood bomb and what may or may not happen, I wanted to go into that surgery non-defeated. I was ready to break up with that tumour, I was ready to start living a healthy life.
It was a week of tests before the big day. They mapped out my brain with the fancy GPS so she could get within 1mm accuracy during surgery. Even though I was beyond frightened I was in awe of modern medicine. But most importantly I trusted my surgeon. The neurosurgical equipment is advanced, but the human behind that equipment is the heart of the surgery. You trust them with everything you have, they put their heart and soul into saving you.
On the day of my surgery everything felt surreal, even my memories of that morning have an eerie glow to them. I was wheeled away from my family into the icy hallways of the operating theatres, I turned to look back at them and waved 'I love you'. I'm taken into a friendly but serious theatre which I imagined to be bigger (I've watched too much Grey's Anatomy). It's the most unnerving sterile scene. I didn't get to see my surgeon before my anaesthetic, I sillily enough wanted to ask her if she had a good night's sleep, wondered if she will get a lunch break and tell her to have fun inside my head. Ten hours later she was there when I woke up, still in the theatre I think, I asked her "did you get it all?" She said "yes" and I held her hand and cried "thank you". Then I said "I can't feel my right side."
Hemiparesis is weakness of the entire left or right side of the body. Hemiplegia is, in its most severe form, complete paralysis of half of the body. My time spent in ICU was purely terrifying. I had clonus, spasticity and increased muscle tone, ataxia, I had lost proprioception in my entire right side, I was numb from head to toe on my right side and in a lot of pain. My right arm was stuck to my chest, my fist so uncontrollably tight. It felt like I'd been cut perfectly down the middle and my right side had melted into nothingness. I couldn't lift my head because my neck muscles were cut from surgery. All I could do was lay there, heavily medicated, but shaking all over, staring at the ceiling and hoping that it was all a bad dream. I remember the physiotherapists coming to sit me up and my sight jumped with vertigo. One minute later they laid me back down and I spent another 24 hours staring at the walls. This was my routine for a long time. They managed to move my arm from my chest a few times and told me if I can try to keep it straight eventually it might be ok. To say I was frightened that I was going to be paralysed forever, is an understatement.
I was moved to Hampstead Rehabilitation hospital to start extensive therapies. It took a few weeks of practicing standing to finally get it right. When you don't know where your joints are in space it's very difficult for your foot, knee and hip to know which way is forward, or up. My foot had dropped and curled under too. With the help of two physiotherapistd and some daring (leopard print) orthotics moon boots, I was eventually able to take a few steps, but I didn't like walking it made me sick using the effected leg, everything was hypersensitive, my skin was on fire, it hurt to move. If I wasn't looking at it, I didn't know it was there and my foot would burn with pins and needles with every numb step I tried to take. I had terrible vertigo and couldn't turn my head. In the mean time I learnt how to steer a wheelchair one handed, it was a little bit fun and I did crash a few times from speeding. I learnt to transfer from my bed to the chair, to the toilet, to the shower, then a few months later I was able to roll over, kneel, reach my arm out, I did lots of tummy time just like a new born baby to get my neck muscles stronger. My right side deteriorated quickly, the muscles wasted away to nothing, I was just bone and flab. The muscles in my back couldn't hold my shoulder blade in place and the increased tone in my arm pulled my shoulder forward. I was morphing into the hunchback of Notre-Dame. I couldn't see beyond a 24-hour period, there was no future, just the here and now, I had to take it one day at a time otherwise I wouldn't have made it. It was too overwhelming to plan ahead because no one had any answers to my only question 'will I get better?'. There are no real time limits on how long it will take to regain function or if I can regain function. My hopes are on the neuroplasticity (changeability) of my brain. My hopes are that the injured nerves heal over time and new pathways are created or old ones heal so my limbs can move more smoothly and my fine motor skills and sensation return to a 'normal' level.
My daily therapies consist of hydrotherapy, physiotherapy, occupational therapy, gym session and upper limb therapy which concentrates on my arm and hand function. Psychologist sessions, routine MRI's every three months, spinal doctors' appointments, neurologist appointments, neurosurgery appointments, massage therapy, acupuncture and microcurrent therapy, plus extra gym and pool sessions outside of my designated rehab hours and an extensive list of medications. I am exhausted, I haven't stopped fighting in 12 months. I have spent every day petrified of my future, I think that terror has been one of my main motivators though, without this fear I would not be fighting so hard. I have put in hundreds and hundreds of hours of therapy into my recovery. The only way to improve is to push past the physical disabilities and pain and just keep going. Keep challenging it.
"I always find beauty in things that are odd and imperfect. They are much more interesting." - Marc Jacobs