Model left half blind with side of face paralysed by huge tumour
An ex-model has been left with one side of her face paralysed due to a brain tumour the size of a tennis ball.
Svetlana Kulinenko, 40, from Chingford, says that she has felt let down by doctors over the last six months. She said it’s a miracle she’s still here with her partner Vladimir, 40, and their three young children Diva, Malina and David. Their nightmare began last summer when Svetlana started to feel tired.
“I would come home exhausted from my job as a learning support assistant,” she explained, speaking to MyLondon. “It was concerning as I’d never been like that. I love my job working with autistic kids. And I suddenly found myself getting up each day on autopilot, like I was in a hazy dream.”
Apart from the fatigue and stress, Svetlana felt healthy. So she decided not to go to the GP. However, come November, things took a serious turn for the worse: “I had an extreme headache and I was vomiting,” Svetlana recalled. “My partner took me to A&E. But when I was seen by the doctor, he sent me home with Paracetamol and told me it was likely just a migraine.”
For weeks after, Svetlana continued to feel drained, and by January she started to get excruciating headaches again.
“It felt like my eyes were going to fall out” she said. “I went to the GP on 30 January and she was amazing. She checked all my reactions as she thought it might be a stroke. She also wrote a letter with advice for us to take to A&E.”
Unfortunately, this letter did not help their case. When they arrived at A&E, Svetlana claims doctors quickly discharged her without doing a scan. And just like before, they told her the headache was probably menstrual symptoms or a migraine, she claims.
Following her second visit to A&E, life slowly went back to normal. Svetlana was still feeling weak and tired, but she was managing to keep working.
Her partner, Vladimir, an IT consultant, said: “On 5 March it was my birthday. The day before Svetlana took me out to lunch and we had a lovely time together. But when we got home, our nightmare started again. She had the headaches and was vomiting so we called an ambulance.”
He continued: “When we got to the hospital, they just left her in the A&E public area. She could not stand up. She was lying across the benches and sitting on the floor in so much pain. I was looking around asking staff ‘please take us, she cannot stand’. After four or five hours we were finally taken into a room.”
Again, the doctor advised them it was a migraine and when Vladimir tried to dispute this, he claims he was made to feel stupid. Svetlana was then discharged with a packet of Paracetamol. The couple say they have since received a NHS letter requesting they pay £9 for the prescribed tablets.
When they got back home, Svetlana lost consciousness. She lay still with her hands close to her face, and while one eye was looking straight ahead, the other was looking out to the side.
“We called 999 and waited 40 minutes to an hour for an ambulance to arrive,” Vladimir said. “She was taken to the Royal London Hospital where they did an MRI. And that’s when they found the tennis ball-sized tumour on the base of her brain. The doctor said to me he had never seen a tumour as big as that before. So we were terrified.”
To relieve the pressure, doctors drilled two holes into Svetlana’s head. They then performed emergency surgery to save her.
“The doctors told me the outcome didn’t look good,” Vladimir said. “They asked me ‘what does Svetlana want to do if she becomes disabled?’ and ‘what will I do if she will not survive’. Questions you only hear in the movies.”
After 11 hours in theatre, Svetlana was transferred to the adult urgent care unit. Doctors informed Vladimir that they had removed as much of the tumour as they could. But due to the difficult location and risk of brain damage, they were unable to get all of it.
“I couldn’t eat or move for days,” Svetlana said. “The biggest concern though was that I had lost feeling down the right side of my face. It went completely numb. They don’t know what has caused the paralysis yet. It could be caused by the surgery, but likewise it could be the prolonged pressure in my head leading up to that.”
As a result of the facial paralysis, Svetlana cannot open her right eye, and it remains unknown how long this will last. She is due to see the consultant next week who she is hoping will give her biopsy results and more information about what will happen now.
A spokesperson for Barts NHS Trust said: “We apologise for the delay in diagnosis experienced by Ms Kulinenko, we extend our sincere well wishes and we still continue to provide her with the best possible care during her treatment journey.”
Throughout this traumatic period, Svetlana’s partner has helped keep her positive.
“I couldn’t have got through this without him, he is my hero,” she said. Svetlana added that as well as the doctors at the Royal London Hospital, her colleagues at Woodside Primary Academy have been incredible.
“My dream was always to do charity work and help young kids,” she said. “Eight years ago I got a job as a learning support assistant at Woodside and I adore it. I have grown a close bond with the children and their parents all ask me ‘can I support them next year?’ It’s such a lovely school. During this whole time my manager, the Head of the School and staff have been checking how I am. I cannot express how happy I am to have a team as amazing as them.”
She continued: “I can’t thank my friends enough for their support. Some of the photographers I used to work with in my modelling days have also got in touch. I had a catch up with one and sent her a picture of me since I cut off all my hair. Because of my eye I was expecting her to say ‘oh god poor you’, but she said ‘you look so beautiful and can we do a photoshoot?’”
Svetlana and Vladimir have set up a GoFundMe page to help them and their three children get through this time. If they receive enough funds, Svetlana hopes to have a treatment this summer for the paralysis in her face. They would be very grateful for any donations. You can donate here.
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