Professor refuses surgery to remove large facial tumour

A Brazilian professor has refused life-changing surgery to remove a large tumour on her face.

Luciana Kele Dorini was born with a tiny birthmark on her right cheek that has swollen over the years, developing into a rare tumour.

Her condition is known as arteriovenous malformation (AVM) – a tangle of blood vessels under the skin causing disfigurement.

The 37-year-old has been offered a number of surgical procedures to remove the tumour altogether, but has declined them. 

She has already had 19 operations to control the potentially life-threatening bleeding she suffers and says she does not want to have any more due to the risks.

  

Luciana Kele Dorini’s condition was discovered when her gums started bleeding as a baby

A scan shows the size of her tumour ¿ caused by a tangle of blood vessels ¿ from the side 

A scan shows the size of her tumour – caused by a tangle of blood vessels – from the side 

Luciana, who works as an economics tutor, said: ‘My fear is putting my life at risk in an operating theatre and having to suffer all over again.

‘I think I have already suffered as a result of necessary surgeries.

‘Looking different doesn’t stop me from doing anything. Of course I won’t stop thinking about the possibility of having surgery to reduce the volume, but for now, no.

‘I want to carry on the way I am.’

Life-threatening bleeds

Because of defects in the vascular system in AVM, blood vessels can burst, causing haemorrhaging.

It was the heavy bleeding of Luciana’s gums as a baby that alerted her family to there being something wrong with her.

Luciana’s mother, Lucia, said: ‘The first time we noticed something different with Luciana, she was eight months old when her gums started haemorrhaging and we had to urgently take her to the doctors.

The 37-year-old will appear in this week's episode of Body Bizarre series

The 37-year-old will appear in this week’s episode of Body Bizarre series

Luciana, an economics tutor, pictured watching her students' graduation

Luciana, an economics tutor, pictured watching her students’ graduation

‘We went [for the surgery] and she almost died. Not even the doctors knew what it was.’

The doctor who treated Luciana, from Mangueirinha, in the southern state of Paraná, had cut through an abnormal artery in her face and diagnosed her with AVM. 

As Luciana’s condition progressed, even the tiniest bump could cause a life-threatening haemorrhage.

Multiple operations

Luciana said she has never suffered social problems with her tumour during the earlier years of school.

‘Socially, I never had a problem with it. I wanted to take part in everything,’ she said.

‘If they needed a main character for a play, that would be me.

‘If they needed a model for a fashion show, I’d do it. I was never hiding.’

But then as a teenager Luciana’s gums began to haemorrhage more often and needed stitching and she started to become more self-conscious of her appearance.

The Brazilian says she was accepted by her peers at school and never bullied over her looks

The Brazilian says she was accepted by her peers at school and never bullied over her looks

Luciana, who has had 19 operations on her face, pictured here talking to her father

Luciana, who has had 19 operations on her face, pictured here talking to her father

She saw a plastic surgeon who offered to remove the birthmark permanently.

Over the next 15 years, Luciana had multiple operations – including having half of her lower teeth removed after the roots cut through the tumour.

She said: ‘Every night I was scared of how I would wake up – or if I was going to wake up in case I started bleeding overnight.

‘It was the most delicate moment of my life. The toughest one, the moment I thought I was going to die. I had no strength left to keep going.’

She says she is fed up of surgery and choose not to have any more on her face

She says she is fed up of surgery and choose not to have any more on her face

A close up of Luciana ¿ who says looking different doesn't hold her back ¿ as she is having her make up done

A close up of Luciana – who says looking different doesn’t hold her back – as she is having her make up done

No permanent fix 

ARTERIOVENOUS MALFORMATIONS: WHAT ARE THEY? 

An arteriovenous malformation (AVM) is a specific term used to describe a tangle of blood vessels with abnormal connections between arteries and veins.

High pressure arteries containing fast flowing blood are directly connected to low pressure veins, which normally only contain slow flowing blood.

This means that blood from the arteries drains directly into the veins – without stopping to supply the normal tissues in that part of the body with essential substances like oxygen and nutrition.

Over time this can lead to the normal tissues becoming painful or fragile.

It also means that the AVM gets progressively larger over time as the amount of blood flowing through it increases, and it can cause problems due to its size.

Finally, it may also mean that the heart has to work harder to keep up with the extra blood flow.

Some doctors describe an AVM as ‘a ring road that bypasses the high street of a town’.

Traffic (or blood) will use the bypass rather than the high street which suffers as a result.

AVMs are thought to affect approximately 1.4 in every 100,000 people.

Source: Great Ormond Street Hospital  

Six years ago, vascular surgeon, Dr Marcio Miyamotto, contacted Luciana and said that he could potentially use liquid embolisation to block the blood flow to the tumour and therefore stop the haemorrhaging.

He said: ‘Luciana was going through a tough time, she’d practically given up treating the AVM.

‘But we had access to a liquid embolisation agent – and for Luciana’s case, it was the perfect medication.’ 

Dr Miyamotto’s treatment worked for Luciana – and whilst the prevention of haemorrhaging has greatly improved her quality of life, she still knows the embolisation is not a permanent fix to her problems.

Luciana’s AVM continues to grow and change shape, and the haemorrhaging may return.

Dr Miyamotto admits the difficulty Luciana has faced in deciding whether to undergo the second stage of treatment to remove the AVM entirely.

But as for now, Luciana has decided to monitor the progression of her tumour and therefore decline the life-changing offer.

Luciana’s life-changing decision will feature in this week’s episode of Body Bizarre series, airing on Thursday.

Also featured is a 12-year-old girl who suffered with an ant infection in her head and the challenging journey of a Roger Logan, the man with the 60KG stomach tumour.

Body Bizarre airs on Thursdays at 10pm on TLC UK.

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