5 Years Brain Surgery Anniversary!

Today is the fifth anniversary of my brain surgery, I can’t quite believe that five years have passed. My hopes and expectations of returning to normal – going back to work, walking Dexter and generally living the same as I did before surgery – have long since dwindled away. Instead I’ve focused on creating a new life for the new Elaine.

People are sometimes confused by why I’ve not gone back to work or back to living my life the old way – going to the pub for example! Some often say “you’re looking well” or “you’re looking great”, I usually smile and say thank you because I know that they mean well. Damage to the brain is often invisible and, apart from my walking stick, I do look ‘normal’ and well! The reality is quite different, daily living holds many obstacles.

I wake up each day in pain, the location can vary, there never seems to be rhyme or reason to the pain. It’s neuropathic, caused by the damage to the nerves by the cyst. My arms, or legs, neck, back, shoulders, fingers, face, chest, collarbone can ache, burn, have shooting pains, to varying daily degrees. I also get abnormal sensations (dysesthesia) across my body. These range from burning sensations, itching, pins and needles, numbness, ice cold feeling under the skin, a wet sensation which I usually feel on my heels, as though I’ve stood in a puddle! I have a constant ringing, like a high pitched screech, in my right ear, it’s 24/7.

Mental and physical fatigue controls a large part of my life, limiting what I can do from day to day. Even though I pace myself to try and control it, because my brain and body compensate for my neurological deficits, I am constantly using more energy to complete simple tasks. Even standing uses more energy because my brain has to compensate for my posture and balance.

I sometimes get overwhelmed if two or more things need my attention, I struggle to structure my day and need to write down ‘to do’ steps to follow. I leave taps running, projects half finished because I’ve momentarily been distracted (usually Dexter barking at the postman or a stranger outside!) and I forget what I was doing.

Due to cerebellar ataxia I constantly feel off kilter, in a state of disequilibrium. Unsteady and imbalanced on my feet, with my spatial awareness feeling fuzzy, out of focus so that I can’t quite judge how close the wall is for example. I often put my arm out to steady myself or to gauge distance from objects. These feelings are magnified by distractions around me, this could be in the way of noise, crowds, busy roads or sometimes just someone walking towards me. Because of the nerve damage the brain can no longer receive messages from the receptors in my feet telling it what terrain or gradient I’m walking on, which allows the brain to send messages to adjust the posture and balance to stay upright on differing terrains and gradients. So I constantly need to watch where I’m walking because eyesight is the only way that the brain can know of any changes underfoot. This has its problems though, because filters in the brain that filter out noise and visual distractions no longer work, so if I hear or see something the brain stops focusing on walking and I, at best, stagger off course, or fall.

Despite all the daily challenges that I face, I get up and try to face each day positively and thankful that brain surgery was a success. I’m able to walk, talk, breathe and swallow, all the things that were at risk because of the cyst and all the things that I struggled and fought to regain after surgery. My breathing was laboured for several days after surgery, because the area of the brainstem that was affected, the medulla oblongata, controls our respiratory system amongst other life enabling functions. I remember reading an article about the medulla oblongata and surgery (thankfully I read it AFTER surgery!), it said that one wrong move near the medulla and the result is, at best a permanent vegetative state, at worse death. So I regard myself as very fortunate that I had an amazing, skilled surgeon who was willing to perform such a risk and to successfully remove the majority of the cyst wall from this fragile area. She has since retired and I wish her a happy and healthy retirement.

I had my yearly MRI scan in March and the results show no regrowth, the cleft that has been left in the brainstem looks stable and it was a thumbs up from the neurologist!

Life is harder but it is also simpler. I’m more appreciative of what and who I have in my life. During my recovery I have met some fantastic, supportive people and I’ve learned new skills which have helped towards building my new life.

I will be forever grateful for the care and support from the NHS, friends, colleagues, family, Lindsay’s family and, most importantly, from Lindsay who has been my rock, my cheerleader, my champion who believed in me and pushed me to achieve my goals and become the best Elaine that I could.

I know that I am unlikely to ever recover and be the Elaine that I use to be and I’m okay with that. These last five years I know that I have done everything that I could to become the best Elaine post surgery, so I can live with, and love, who I am today.