A cancer survivor has spoken of her joy after being fitted with what is thought to be the first bespoke artificial tongue on the NHS.
Surgery to remove a tumour took most of Dr Imogen Brooks’ tongue, while subsequent treatment left her with speech problems that she said caused strangers to look at her “in fear” when she spoke for the first time.
To help her regain clear speech, experts from Guy’s and St Thomas’ NHS Foundation Trust have spent months working on the custom-made prosthetic, which was designed for her to create the maximum number of sounds.
Diagnosis and treatment
Dr Brooks, an assistant medical writer from Newham in east London, was diagnosed with a squamous cell carcinoma, the most common type of head and neck cancer, when she was just 26. Surgery three years ago meant she lost most of her tongue.
While her speech after reconstruction was good, subsequent radiotherapy then shrank the tissue. Dr Brooks, now 30, had to use speech assistance technology on phone calls, but said acquaintances and past colleagues would avoid talking to her in person.
She told the Press Association: “I spent a lot of time by myself and with some guidance from the speech therapist finding approaches, but 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.”
Dr Brooks said this would cause issues with incorrect information, impacting her medical appointments and causing problems in the workplace. She described the period as “really frustrating”, adding: “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.”
Developing the prosthetic
After doing research on prosthetic tongues, Dr Brooks 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”.
“At my next appointment there were eight people in the room – everyone was willing to try,” she added. Carolyn Doughty, advanced specialist speech and language therapist at the trust, formed a multi-disciplinary team from restorative dentistry, including doctors and laboratory technicians.
They created two trial tongues after months of research and scanning before refining the final version. The U-shaped frame is made of cobalt chrome and clips onto Dr Brooks’ bottom teeth, with a fixed silicone tongue that was 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. Imogen would work with Carolyn on making sounds with her prototype prosthesis.
“Then she would take home a design, try it out and come back to us with lots of notes. It has been so satisfying to have worked with Imogen through this.”
Impact on daily life
After presenting the findings at conferences in the UK, Ms Doughty believes this is the first time a prosthetic of this kind has been made on the NHS. 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 went on to pass an oral exam for her doctorate in skin disease therapies at King’s College London. Dr Brooks said her bespoke tongue has made a “massive difference” to her life.
“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,” she said.
She is also now able to have conversations with her grandmother again more easily. “My grandmother is hard of hearing and I have found it very upsetting how challenging we were finding conversation,” Dr Brooks told PA.
“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. “I hadn’t told her about it at that point,” she added. “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.”
Physical benefits and recovery
There have also been physical benefits since Dr Brooks received the final version of the prosthetic last year. She told PA: “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.”
Dr Brooks said her cancer symptoms were very mild and she even feared she was “overreacting” when she went to her GP and asked them to check her tongue. She told PA that it was a “massive shock” when she was diagnosed with squamous cell carcinoma. Now, there is no sign of the disease.
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.”
