A former model who feels “let down” by doctors who missed a brain tumour the size of a tennis ball says she doesn’t know if she will ever be able to open her right eye again.
Svetlana Kulinenko says she first noticed her symptoms around six months ago.
“I would come home exhausted from my job as a learning support assistant,” she told MyLondon. “It was concerning as I’d never been like that.
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“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.”
Assuming she was just suffering the normal effects of being a mum of three Svetlana, 40, delayed going to her GP for the first few months.
However, come November, things took a serious turn for the worse, with Svetlana suffering an extreme headache and vomiting.
But when she went to A&E she was told she probably just had a migraine and was sent home with some paracetamol.
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.
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Her GP suspected she might have had a stroke and gave her a letter to take to A&E.
When they arrived at A&E, Svetlana says doctors quickly discharged her without doing a scan. And just like before, they told her the headache was probably menstrual symptoms or a migraine.
But her symptoms came back, if anything worse than before.
Again, a doctor told Svetlana she had a migraine and when her partner Vladimir questioned that, 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.
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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 a 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, surgeons drilled two holes into Svetlana’s head.
“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.”
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After 11 hours in theatre, doctors informed Vladimir 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.
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 sill continue to provide her with the best possible care during her treatment journey.”
Svetlana and Vladimir have set up a GoFundMe page and they receive enough funds, Svetlana hopes to have a treatment for her facial paralysis.
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