A cancer survivor has become the first NHS patient to be fitted with a bespoke artificial tongue. Dr Imogen Brooks, 30, lost most of her tongue in surgery to remove a tumour, which left her with speech problems that caused strangers to look at her "in fear" when she spoke for the first time.
A team of experts from Guy's and St Thomas' NHS Foundation Trust created the prosthetic, which clips onto her teeth to help her produce the maximum number of sounds. Dr Brooks said it has made a "massive difference" to her life, adding: "What I really notice is how much more willing people are to listen to me, how much less difficulty they have understanding me, and when they have difficulties, how much more willing they are to ask me to repeat myself."
Diagnosis and surgery
Dr Brooks, from Newham in east London, was diagnosed with squamous cell carcinoma, a form of skin cancer, on her tongue when she was 26. Her symptoms were very mild, and she feared she was "overreacting" when she went to her GP to check her tongue, before the "massive shock" diagnosis.
Surgery three years ago meant she lost most of her tongue. While her speech after reconstruction was good, subsequent radiotherapy shrank the tissue. Dr Brooks had to use speech assistance technology on phone calls, but said acquaintances and past colleagues would avoid talking to her in person.
She said: "I spent a lot of time by myself and with some guidance from the speech therapist finding approaches. What I was finding was people would actually look at me in fear when I spoke to them for the first time. And it was so, so common for people to just smile and even not respond and make up in their head what I had said. I was thinking if I was just able to have that little bit of contact between the bottom of my mouth and the top of my mouth, it would be better."
Building the prosthetic
Dr Brooks works as an assistant medical writer, researching, planning, and helping draft scientific and healthcare documents. After researching prosthetic tongues, she asked her clinicians at Guy's and St Thomas' if she would be a good candidate. She said the request "was like assembling the Avengers", adding: "At my next appointment there were eight people in the room - everyone was willing to try."
A multi-disciplinary team was put together, including doctors, dentists, and laboratory technicians. The final version is a U-shaped frame made of cobalt chrome that clips onto Dr Brooks' bottom teeth, with a fixed silicone tongue tailored to her.
Michael Brown, dental technician at Guy's Hospital, said: "We'd never made something like this before, but our team loves a challenge. We based the design on a shape which would allow Imogen to make the maximum number of sounds. There was a lot of trial and error in finding a shape that would work. She would take home a design, try it out and come back to us with lots of notes."
Impact on daily life
It took Dr Brooks around two weeks to get used to the prosthetic, though she noticed improvements in her speech after just three days. She told how she is now able to have proper conversations with her grandmother, who is hard of hearing.
She said: "I had found it very upsetting how challenging we were finding conversation. I was often using very big hand gestures. I was writing a lot. If we were in a group conversation, that was a real challenge." After getting the first prototype tongue, Dr Brooks visited her grandmother. She said: "I hadn't told her about it at that point. We were having a conversation and I showed her the prosthetic, and she said this was the first time that I didn't need hand gestures as much because she was able to follow me a lot better. It's true with everyone, but perhaps especially with her.
"It is much less effort for me to speak with it. I can speak for longer without having to take a breath in the middle of a sentence. I don't have to think as much about what I'm saying, so it means that my speech is much more fluid and it's much less tiring for me to speak. That in itself is massive."
There has been no sign of Dr Brooks' cancer returning, and her new tongue has helped her pass an oral exam for her doctorate in skin disease therapies at King's College London. Dr Brooks said: "Even immediately after surgery, one of the first things I said to my speech therapist was, 'I want to fight for every single bit of intelligibility that is possible'. I hope this inspires other medical professionals to also collaborate with patients and to work to improve quality of life in whatever form that may be."
