9 minute read
I’D SEEN AN AWAKE CRANIOTOMY ON GREY’S ANATOMY
PATIENT STORY
I’d seen an awake craniotomy on Grey’s Anatomy - this was not a role I thought I’d ever play
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Having been diagnosed with a brain tumour, Helen Fall then faced the trauma of knowing she must undergo an awake craniotomy. Here, she discusses her experience and how it has enabled her to move on and rebuild her life
At the age of 40, I received the diagnosis of a low grade glioma (astrocytoma) in the left temporal lobe. The tumour was pressing on my speech and language centre. Looking back, I recall symptoms over the last five years. More startling was the idea that the tumour had potentially started growing up to two decades before. My symptoms began with slight memory loss. I recall an awkward moment on the phone when I was booking a nail salon appointment but couldn’t remember the word ‘manicure’. Yet the majority of symptoms resembled deja-vus or auras. When listening to an audiobook I might suddenly have a strong feeling of familiarity as if I knew the narrative by heart. Occasionally I got the feeling that a radio presenter was speaking only to me. On other occasions, I imagined hearing a message from a third party, which I’d quickly forget or rush to note down. Any notes I made were always gobbledygook. I had no idea that these ‘deja-vus’ were in fact mini seizures. I had assumed that growing older and having tough sleepless nights raising two young children were the cause. In addition, if I ever approached a GP, I found my experiences
PATIENT STORY
extremely hard to explain. It was only after the frequency of these experiences increased from every few months to daily occurrences that I started a diary and pressed ahead for more explanation. The news that my tumour existed and that I should have an awake craniotomy felt like a punch in the stomach. I’d seen an awake craniotomy performed in the US show Grey’s Anatomy and this was not a role I thought I’d ever play! My neurosurgeon, Timothy Jones at St George’s University Hospital London, made it clear why he recommended this type of surgery: to de-bulk the tumour but retain my speech. He also broached uncertain topics: the definite grade of the tumour cells, the risk to my English and the possibility of losing my second language (French). It was as if someone was holding my hand to help me get oriented in a pitch black room. Fortunately, I had four months to prepare for surgery as the tumour remained slow growing. This ended up being seven months due to pressure on hospitals during the pandemic. During this time, I gained a better understanding of my disease by speaking regularly with Tim. I approached another highlyrated consultant neurosurgeon for a second opinion and this reinforced my decision to go ahead with the awake craniotomy. I also spoke with the consultant clinical oncologist who specialises in treating my kind of tumour post surgery. Tim told me that a speech and language therapist (SLT) would play a key role in my surgery. She would communicate with me during the operation and liaise with the surgery team to ensure that de-bulking the tumour avoided damaging crucial language areas of my brain. I prepared myself physically and mentally for the awake craniotomy through improved eating, sleeping and exercise. I expanded my interest in complementary medicine. I found myself drawn to Ayurveda as a practice of natural healing and wellbeing and I gained support from an excellent practitioner. All of this helped me face challenging questions that I didn’t think I’d have to deal with until old age. Before surgery, Claire Axton, my SLT, ran through a simple picture quiz with me. She explained that naming the same pictures during surgery would help them identify which part of the tumour had amalgamated with my language function. Of course she acknowledged that I wouldn’t want to leave hospital only capable of saying words like ‘horse’ and ‘socks’! A conversation during the operation would be a more refined way of deciphering how my brain processed language. She was calm about the whole procedure which was comforting. The day of surgery I was anaesthetised while the surgery team positioned me on my side, shaved a small amount of hair, clamped my head and drilled my skull open. On reflection, it now makes me laugh to remember opening my eyes at the peak of the operation. My head was wide open yet I told them it was uncomfortable lying on my right arm! It suppose it shows how effective the anaesthetic was. I recall then being put under again to be repositioned. Given how many hospital staff I’d met, it was very reassuring to see Claire’s face during the operation. She seemed calm and unruffled. Her face was a relaxing focal point. I recall my own face twitching a few times which she informed Tim about. Apparently I lost my speech occasionally too. This was as a result of testing of the tumour cells prior to their removal. Her questions led me to chat easily for a couple of hours. It was perhaps also helped by the sedation given I am not the talkative type. Time passed quickly. Suddenly Tim popped in front of me and smiled. They had finished the operation, having successfully removed over 90 per cent of the tumour. I recall being monitored overnight in the Intensive Care Unit post-surgery and suffering a dreadful headache. I woke up asking for tea and painkillers but had no other major issues. It was a day later that my brain must have swollen due to surgery and caused sudden and significant loss of speech. After a day or two of drug-induced dreams, a nurse helped me out of bed and pointed to the magpie nest in the tree outside my window. I learnt how to say ‘nest’ and understood that ‘magpie’ was a bird but could only imagine a pigeon and took a few attempts to remember the word. I saw a helicopter arrive at hospital but couldn’t remember what it was called. What was left of my speech moved at a glacial pace. Watching TV or reading a book was way over my head. I switched on the old Fawlty Towers series and couldn’t understand a single word, even if familiar slapstick comedy was comforting.
More words came back to me and I could follow conversations at normal speed…three months following surgery I could speak almost as well as before, both in English and French.
PATIENT STORY
My speech and understanding gradually improved. I was well enough to go home after five days despite still speaking in rudimentary fashion, like a foreign student, according to my husband. I could only listen to one person at a time and they would need to speak slowly. Funnily enough, I seemed on the same conversational wavelength as my two- and four-year-old daughters. If they said ‘I want a story’ I understood and could read them a simple book like ‘Pete the Cat’. Over the first two weeks home, there was a steep improvement in my speech. It continued to get better. More words came back to me and I could follow conversations at normal speed. It was only during daily short periods of fatigue that I’d struggle to remember words, slur and talk slowly. I took up the offer of local speech therapy from Claire, however my language seemed to surge ahead on its own. Three months following surgery I could speak almost as well as before, both in English and French. I am so appreciative of the care I have received so far. Part of the tumour remains and will be monitored for the rest of my life. Awake craniotomy is understandably daunting. I highly valued the second opinion I sought which backed up my decision to go ahead. Improving my physical and mental strength ahead of the operation was also clearly beneficial. If you are in a similar situation, I would recommend early investigation of post surgery therapies, such as neuropsychological and speech therapy. Losing one’s language is unquestionably a hurdle. But the kind faces of people helping you along are invaluable.
Therapist Claire Axton
For the past five years, I have been working in the highly specialised field of awake craniotomy, supporting patients through the experience of undergoing brain surgery whilst conscious. As can be seen in Helen’s account, by the time I meet the patient for pre-operative language testing, they have often been on a long journey to diagnosis and undertaking their own preparation for surgery. At that first meeting, there are often a lot of questions and some degree of apprehension. A large part of my role is to provide reassurance and a calm focal point as described by Helen. Upon meeting Helen, she had questions about the surgery – how long would she be awake? Would she remember the surgery? I gave her a broad timeline of the day and explained how I would be with her during the operation and would essentially be the link between her and the surgical team during the time she was awake. After the surgery, Helen’s language function would be carefully evaluated and support given by the speech and language therapy (SLT) team. She struck me as calm and determined about the process she would face the next day. An awake craniotomy aims for maximal removal of a brain tumour while preserving critical language function; operating on a tumour when the patient is awake enables the surgeon to push hard to remove the tumorous tissue, knowing that the patient is still able to communicate. As Helen’s SLT, my job would be to constantly test and monitor her language function, alerting her surgeon to any changes. It is crucial then, to know the starting point, or baseline, of the patient’s communication. In Helen’s case, she was very able to participate in conversation, but on testing, she had to concentrate hard when listening to information and was sometimes hesitant when saying words. During the surgery, Helen’s language underwent very little change and she was able to perform all the tests. Postoperatively, as described by Helen, her communication ability dipped markedly, as can often happen due to swelling of the brain. It was obvious that she was finding it difficult to understand the words I was saying and to express herself. Again, Helen was calm and I hoped that this was in part due to the preparation we had done before the surgery about changes that can occur post-op. I was optimistic that her communication would improve and, despite her initial difficulties, she was keen to get home to her husband and children as soon as she could. Helen had the help of her family, which meant she could be safely discharged home from hospital with a referral to her community neurorehabilitation team to support her recovery.
