“I was wide awake during brain surgery… with my hearing aid on”

Debbie Powell is a sign language teacher from Peterborough in Cambridgeshire. Debbie is deaf, uses speech, and has worn a hearing aid all her life. For Debbie, her hearing aid had been essential for as long as she could remember; but when Debbie needed brain surgery to potentially save her life, her hearing aid became important in way she could have never foreseen.

Debbie’s fascinating story begins while she was having afternoon tea with a friend at a garden centre on a sunny day in May 2010. It was then, in pleasant surroundings, that disaster struck and her life changed forever.

“I was enjoying having a cup of tea and a scone in the restaurant but I was aware that something wasn’t quite right with me and I couldn’t put my finger on it.” She said.

“I didn’t really feel myself and I kept finding it hard to say certain words. I began repeating ‘one, two, three, four, five, one, two, three, four, five’ to check that I wasn’t going mad. I realised that I couldn’t speak properly; I couldn’t get my words out. I couldn’t say what I was thinking.”

“My friend realised that I was struggling to talk but before she could do anything, I had a massive seizure. I was gone, I don’t remember what happened after that.”

“My friend told me later that she thought I died in that restaurant because during the seizure, I appeared to stop breathing. I came around about 45 minutes later in a hospital bed after being rushed off in an ambulance.”

Debbie was discharged from hospital later that day. She had no previous history of epilepsy so the cause of the fit was unknown; but Debbie resolved to try to give it no more thought until she went to for an MRI scan two months later in July.

“I went for the MRI scan in a mobile unit at Stamford Hospital. The next day I got a call from Peterborough Hospital’s neurology department telling me to come in immediately for another scan. I couldn’t drive anymore because of the fit so I had to book a taxi and by the time I got there I had already got myself upset and was panicking.”

“The nurse did a great job of calming me down. I went through the MRI once again, was told nothing, and was given an appointment with the consultant neurologist the following week.”

“Dave, my husband, came with me to that appointment. The consultant knew I was deaf – he looked at me to make sure I understood what he was saying. ‘All I can say’, he said, ‘is that you have a brain tumour’. I began to feel scared that this was the end – scared that maybe I was going to die.”

Debbie was referred to Addenbrookes Hospital in Cambridge and within days was presented with three choices by the surgeon there. The first was to leave the tumour and do nothing. The second was to have a biopsy to see what kind of tumour it was and the third, was to have surgery and attempt to remove it. For Debbie, the decision wasn’t a hard one to make. The tumour had to be removed and within four weeks Debbie would be in the operating theatre.

Waiting for the operation was a tense time for Debbie, husband Dave and her two teenage children. Debbie found it increasingly hard to sleep because she had to keep the light on at night to distract from the flashing lights in her vision. She had also developed tinnitus that sounded like a roaring jet plane overhead. She once even asked her son if there were planes in the sky.

“I received a letter from the hospital telling me about the procedure and that I would be under general anaesthetic during it. I was also aware that no one really knew what the outcome of the operation might be.” she said.

“On the day of the surgery we went to the hospital, we waited around for hours but when it was time to go into the theatre, the anaesthetist said: ‘You do know you’ll be awake for this, don’t you?’

“’What?’ I said. I was so scared – I burst into tears. I was already worried enough but I couldn’t cope with the thought of being awake while I was having brain surgery.”

Debbie’s tumour, called an oligodendroglioma, had grown on an area of the brain that was responsible for speech. Doctors were worried that removing it may have serious side-effects including losing the ability to speak or remember. The only way to check during the surgery that everything was working as it should, was to keep Debbie awake and keep her talking. But there was a problem – Debbie is deaf and would need to have her hearing aid on to engage in the crucial conversations with the nurses.

It was Debbie’s hearing aid that helped her develop speech when she was younger. Now her hearing aid was called upon to help doctors save it.

“They were going to cut my skull open and remove a piece so they could get access to the tumour. The bottom end of the cut was going very close to my ear so the surgeon suggested covering up my hearing aid with plastic to avoid getting blood on it.” Debbie explained.

“I lay on the operating table with all the lights and equipment around me and made myself comfortable. Once I was happy, they gave me injections to numb my head and they began the procedure. I remember I could hear the noise of my skull being opened but I couldn’t make out what the surgeon was saying.”

“Sat in front of me was the nurse whose job it was to keep me talking. The surgeon probed my brain while the nurse asked me questions, checking if I could answer, so they knew no serious damage had been caused. They kept me chatting and stopped me from falling asleep because the anaesthetic drugs made me feel very drowsy. Every now and again, I felt a tap on my legs to keep me awake.”

After five hours, the main part of the operation was over and Debbie was finally allowed to doze off while her head was reassembled. Shortly afterwards, she woke up in her hospital bed with her family around her and quickly realised that something was wrong.

“I picked up a magazine and realised that I couldn’t read anything. Nothing written on the pages made any sense. Then somebody sent me a text message and I couldn’t read that either. I began thinking that maybe I wouldn’t be able to read or write again.”

“The surgeon came to see me and told me that he got the tumour out, I felt so relieved, but at the same time I was very worried because I thought I had lost the ability to read. Then, a deaf friend came to visit me that evening and began signing – but I couldn’t process what she was talking about or remember any signs myself. Being a sign language teacher, I now thought maybe my career was over too.”

Debbie was discharged and began her recovery at home. Soon, her signing skills returned but reading and writing proved more of a challenge. Debbie would normally watch TV with subtitles on but that was about to change.

“I told my family to get the subtitles off.” Debbie said.

“I couldn’t understand them. To me, subtitles were just random letters flashing on the screen and they became distracting. I was having trouble sleeping too so I’d watch Sign Zone (programmes with on-screen sign language interpreters) in the middle of the night. It was the only TV I could enjoy at the time because I could understand the sign language perfectly.”

“About five weeks later I slowly regained the ability to read and write. Even simple responses to text messages would wear me out mentally but I continued to improve and two-months later I was back teaching sign language.”

“I still have problems with numbers and worry if I will have another fit in future but I don’t let that stop me. I have helped over 100 people learn sign language since the operation.”

“Six-months after I had the brain tumour removed, I was diagnosed with breast cancer and beat that too … but that’s another story.”

By Andy Palmer, The Limping Chicken’s Editor-at-Large.

Andy volunteers for the Peterborough and District Deaf Children’s Society on their website, deaf football coaching and other events as well as working for a hearing loss charity. Contact him on twitter @LC_AndyP (all views expressed are his own).

The Limping Chicken’s supporters provide: BSL translation, multimedia solutions, television production and BSL training (Remark! ), sign language interpreting and communications support (Deaf Umbrella), online BSL video interpreting (SignVideo), captioning and speech-to-text services (121 Captions), theatre captioning (STAGETEXT), legal advice for Deaf people (RAD Deaf Law Centre), Remote Captioning (Bee Communications), visual theatre with BSL (Krazy Kat) , healthcare support for Deaf people (SignHealth), specialist lipspeaking support (Lipspeaker UK), sign language and Red Dot online video interpreting (Action Deafness Communications) education for Deaf children (Hamilton Lodge School in Brighton), and a conference on deafness and autism/learning difficulties on June 13th in Manchester (St George Healthcare group).