‘It’s Aliyana, not Ariana,’ Kelly Ann corrected her doctor when he started chatting about her horse.
She could be forgiven for being a little snappy – he was asking the question while operating on her brain.
Kelly Ann Alexander, 41, had an awake craniotomy – an operation where doctors work on the brain and wake the patient up during the procedure to make sure that they don’t do any damage.
You might have seen videos of people playing the violin or making phone calls during surgery but for most people having the operation, the medical team just ask a few questions while stimulating the brain.
Brain fibres don’t have any pain fibres so touching or cutting the brain doesn’t hurt. Local anaesthetic is used to numb the tissue and muscles around the area the surgeon has to cut, meaning doctors can operate without hurting the patient.
The operation is used to treat people who have a brain tumour as it allows doctors to try to remove as much of the tumour as possible while making sure they don’t affect things like speech and movement.
Kelly Ann had the operation after she was told she had two slow-growing tumours in her brain, which were discovered when she suffered a seizure at home in September 2015.
She tells Metro.co.uk: ‘I had been feeling tired for a while but at the time I was working really hard at my job as a professional horse groom. I was looking after 15 horses on my own plus my own horse Aliyana.
‘On the day of the first seizure, I told my husband, Kevin, I was going to bed at about 7pm because I was just so tired.
‘About 10 minutes later, he thought I was smashing up the room and he came in to find me having a seizure.
‘He called an ambulance and I was rushed to hospital but when I got there, they told me I was drunk, I needed to “sober up” and sent me home.’
On the way home, Kelly had another seizure and she went to see her GP first thing the next morning. Her doctor told her it sounded like she had epilepsy and prescribed anti-seizure medication.
In the days that followed, she has more seizures and when her husband had to go off to work for two weeks as a long-distance lorry driver, she decided to go and stay with her parents 300 miles away in West Lothian, Scotland.
With Kelly Ann not allowed to drive, a friend drove to collect her and then drove her home.
On the journey, Kelly Ann had about 14 seizures and as soon as she walked into her parents’ house, she had one huge seizure in front of them.
They took her straight to hospital where she was taken for several MRI scans and CT scans.
The following day, she was told she had two tumours on her brain and although they were slow-growing, they were putting pressure on the front, causing seizures and other symptoms including a metallic taste in her mouth.
A few days later, Kelly Ann and her family were given a few options for treatment – either surgery or a combination of chemotherapy and radiotherapy.
Kelly Ann explained: ‘Having seen my grandparents go through cancer, I knew I wanted to avoid chemotherapy and radiotherapy if I could so I decided to have the surgery.
‘I wasn’t bothered about being awake because I really just wanted the tumours to be removed. The night before I was a little nervous and I was googling the surgery. I found a video of a man playing the violin during it and I thought that if he could do that, I would be ok.’
On 24 November 2015, about six weeks after diagnosis, Kelly Ann had the operation.
In most cases, the patient is given an anaesthetic to sedate them while they open up a hole in the skull but is woken up just before the point where doctors start to remove the tumour.
Kelly Ann explains: ‘I can remember so many things from the operation.
‘I can remember them asking me to lift my arms and arguing with them about the name of my horse.
‘I heard them asking for tools and scalpels and I asked them not to say those words because it was scaring me.’
After they had removed as much of the tumour as possible, Kelly was sedated again while they stitched up her skull.
Unfortunately, doctors were only able to remove 70% of Kelly Ann’s tumour. Initially she remained stable but over time, they have grown.
What are the symptoms of a brain tumour?
Symptoms can vary depending on where the tumour is growing but can include:
- Severe and persistent headaches
- Changes in vision, such as blurriness, double vision or blind spots
- Flickering eyes
- Bulging eyes
- Continuing nausea, vomiting
- Extreme or sudden drowsiness
- Tinnitus (ringing in the ears) or hearing loss
- Unexplained twitches of the face or limbs
- Seizures (fits or faints)
- Appearing to be lost in a deep daydream for a short while
- Confusion
- Loss of balance
- Numbness or weakness in the arms or legs, the face or on one side of the body.
- Changes in personality or behaviour
- Impaired memory or mental ability, which may be very subtle to begin with
- Changes in senses, including smell
- Problems with speech, writing or drawing
- Problems with averting the eyes upwards
- Loss of concentration or difficulty in concentrating
- Changes in sleep patterns
Brain Tumour Research
A year ago, three years after her operation, Kelly Ann was told that the tumours had grown big enough to need more treatment.
In January this year, she started radiotherapy and is now undergoing chemotherapy in a bid to shrink the tumours again.
James Hinnigin, like Kelly Ann, had an awake craniotomy after he was unexpectedly diagnosed with a brain tumour.
Back in 2015, he was living in Australia with his wife Wendi and son Cameron when he suffered a seizure.
The 40-year-old explains: ‘I thought I was having a stroke because I lost all coordination and strength.
‘I was rushed to the hospital and they did a scan of my brain, where they found the tumour.’
Initially starting treatment in Australia, James and his wife decided to move back to the Ashton-in-Makerfield in Greater Manchester to be closer to family while he was ill.
He was told by his doctor here at Charing Cross hospital in London, that he could have an awake craniotomy. Although he was slightly worried about the idea of being aware of what was happening during the operation, James says he just wanted to get the tumour out of his head.
He was accepted onto a trial using an iKnife, which can identify healthy and diseased tissue in real-time, and laser procedure to make the craniotomy even faster.
He had the surgery, which was filmed, in March 2016, led by Babar Vaqas, the trial chief investigator, and Kevin O’Neill, who leads the Brain Tumour Research Centre of Excellence at Imperial College.
He explains: ‘I was groggy when they woke me up but I remember them asking me questions and checking my speech as that was the thing they were most concerned about.
‘At one point I was completely overcome with emotion and I started to cry because I felt the team were just such special people and I was so lucky to be treated by them.
‘I even asked Kevin O’Neill to show me the tumour after he cut it out. He showed it to me and I waved goodbye.
‘At the end, they asked me if I wanted to go back to sleep. I said no because I was happy to be awake while they stitched me up.’
James’ operation was successful and he recovered well physically but admits the illness had a huge impact on his mental health.
With the support of his family and charity Brain Tumour Research, he is now back at work as a maintenance manager.
Kendra Smith’s memories of the operation are even more vivid than James’. She had an awake craniotomy in July this year, over two years after a previous standard craniotomy.
Doctors were able to remove most of the tumour in the 28-year-old’s brain during the first surgery but around 20-30% remained.
Initially, doctors wanted to perform another standard craniotomy to try to remove more of the tumour but she was told there was a risk it could damage the function in the left side of her body.
After seeking a second opinion, she was told about the awake craniotomy procedure.
During the surgery, the sedation did not work and although the area was numbed with local anaesthetic, she was able to see and hear what was happening as they opened her skull.
Kendra, from Pennsylvania, US, explains: ‘I was awake the whole time. I remember pretty much everything. One of my most intense memories was actually seeing the surgeon take like saw to my head so it was pretty intense.
‘I remember a lot of pressure, a lot of noise, a lot of things happening. They actually had a nurse who sat next to me the entire time, her job was to make sure I didn’t fall asleep
‘I remember being really tired because it was a three to four hour operation. I wanted to go to sleep and I remember the nurse saying: “I need you to blink your eyes now”.’
Noticing Kendra was terrified by what was happening, her doctor remembered she loved System of a Down and played their music in the background to try to keep her calm.
Luckily, the awake craniotomy was a success and Kendra’s doctors were able to remove the final bits of the tumour.
She is now doing rehab but will hopefully stay cancer-free.
She added: ‘I’m just amazed that they were able to remove everything and I was fine. There is always a risk it could come back but for now I am cancer-free and working through rehab.’
Having a brain tumour is rare and not everyone is suitable for this type of surgery but these operations are incredible.
Not only do surgeons carry out complex and intricate surgery, but they have to consider how the patient will react and how to keep them calm.
As James adds: ‘I feel so lucky to have undergone this surgery. I was so privileged to be able to have it and for it to be 100% successful. The doctors who do this work are simply amazing. They are heroes for me and my family.’
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