A mother who suffers from a horrific condition that is ‘harder to control than cancer’ has been forced to have half of her face removed to try and control it.
AVM causes the veins to dissipate, causing them to tangle and, when it flares up, spread like the ‘branches of a tree’.
The condition causes pain, skin breakdown, overgrowth of tissue, and even heart failure – and in some patients needs regular treatment to break down or remove the tangles.
Mrs Brent claims one doctor has told her the condition is ‘more difficult to control and sort than cancer because, if you leave anything behind, it just regrows aggressively’.
And despite having had two massive operations to try and save her, she is still suffering – and now hopes to raise £25,000 for pioneering surgery.
Mrs Brent said: ‘In my last operation, the surgeon basically cut the side of my face off.
‘I will never be completely normal looking again because with so much surgery and damage that has been done – but I want to try and save my life.
‘Now I just have to be brave and get on with life.’
Mrs Brent spent most of her life unaware that she had the condition.
The only sign was a faint line down the side of her face when she was born, which disappeared when she was a child.
Then, when she was 45-years-old, she noticed a pulse beating in her face.
She visited her GP, who diagnosed it as AVM and gave her treatment – and she believed that would be the end of it.
It was only when she began suffering from intense migraines, a common symptom of the disease, that she was referred to Leeds General Infirmary for a major operation on her face to remove the AVM.
She said: ‘I was completely disfigured when I came round, just an absolute mess. My nose had dropped and everything.’
Soon after surgery she began to suffer life-threatening facial bleeds, and, on one occasion, came close to death after losing three pints of blood.
‘I had a massive bleed – this is what can happen with AVM if it is not treated properly, apparently,’ she said.
‘I almost died twice and they rushed me into York hospital, which is the nearest from here.’
But Louise was eventually told by doctors that nothing more could be done.
She started to research the condition and found a professor in the US who is a specialist in treating AVMs.
After travelling there she underwent major surgery, but she needs further treatment to potentially stop her from going blind in one eye.
But after spending over £100,000 her money is now running out.
‘I had no choice but to go to America,’ she said.
‘We went to the US last July for my first treatment, where, basically, he cut the side of my face off.
‘It was massive surgery, 12 hours, and then it didn’t heal properly while we were there and he had to do another five-hour operation.’
The money she has spent so far has been paid forwith her husband’s redundancy and generous donations from her family.
However she fears she could one day be forced to remortgage her house to pay for the treatment.
In desperation, she is turning to strangers to raise further funds for treatment that she hopes will rid her of the disease completely.
She said: ‘I started doing a lot more research and found a professor in Arkansas.
‘He says they are more difficult to control and sort than cancer because, if you leave anything behind, it just regrows aggressively.’
‘What the surgeon has done is amazing. But I need so much more help.’
Visit www.gofundme.com/o1lqwc to donate.
AVM – WHAT IS IT AND HOW DOES IT CAUSE SUCH DAMAGE?
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 pressureveins, 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
