For as long as he can remember Daniel Anczarski was told the abnormal growth on his neck was incurable – experts said it was too dangerous to even attempt to remove it as there was a risk he could bleed to death.
But two specialist consultants at South Tees Hospitals NHS Foundation Trust have teamed up to successfully treat the vascular malformation birthmark with a series of carefully administered injections which have delivered “miraculous” and life-saving results.
When plastic surgeon Tobian Muir and head and neck surgeon Shane Lester agreed to investigate Daniel’s malformation they took one look at his MRI results and were amazed that he was still alive. His airways were full of bulging veins and were almost completely blocking his air way.
“They said they did not know how I was still breathing and that it could be a day, a week or a year, but I would die if I did not do something,” said Daniel, 45.
Daniel was given a course of very carefully administered bleomycin injections in a procedure involving both consultants. Bleomycin is a drug which affects the vessel lining cells and causes them to disappear, or decrease in number.
After the first injection Daniel had to have a tracheostomy tube inserted to help him breathe, but eight internal injections later the telephone engineer from Rugby says he feels like a new man. Not only does he feel younger and fitter, but the procedure has also cured his sleep apnoea, stopped him snoring and given him a normal airway.
“I breathe like a 20-year-old,” he said. “I think they have created a miracle to be honest! It’s saved my life.
“All my life doctors would not touch it because it was on my veins. I have lived with it all my life and been told all my life there’s no one who can help me.”
It was an online search that led to Daniel discovering the South Tees vascular birthmark clinic. His wife Melissa encouraged him to check it out and it turned out to be a life-saving decision.
“It was the first time ever someone was willing to take it on,” said Daniel. “After the first treatment the consultants could not believe how well I was taking to the bleomycin.
“Looking back now I don’t think I have breathed properly for the last 20 years. But I can do an hour at the gym now and not even feel out of breath.”
The James Cook University Hospital and the Friarage Hospital were the first in Western Europe to offer bleomycin injections. Mr Muir has seen many success stories since its introduction at the trust in 2004, but he says Daniel’s was the biggest airway malformation he had ever seen.
“He had a miraculous response,” said Mr Muir. “We know we can shrink malformations and we have treated patients with airway malformations, but this was really big. We knew we could improve it but we did not think we could get the airway back to normal.
“It’s extraordinary and we hope other patients like him will now see that this is not untreatable.”
Daniel had been warned that he may have to live with the tracheostomy tube for the rest of his life or if he was lucky this could be removed but he would probably continue to suffer from sleep apnoea so would have to continue using his CPAP (continuous positive airway pressure) mask. No one expected him to walk away with a normal airway.
“It worked better than we thought it could, said Daniel. “It’s been challenging but the help and support I have had from the hospital has been amazing. I would class these two doctors as the best in the world. What an amazing job they do!”
Mr Lester added: “When I met Danny it was clear that his airway and life was at risk, whether or not he underwent treatment. Despite a couple of very close calls, we got him through it and we’re very pleased he is feeling better than ever. He was an absolute pleasure to have as a patient, taking it all in his stride and I am grateful to have been a part of the fantastic team that has helped him.”
Matthew is a completely different child thanks to the state-of-the-art treatment now available at The James Cook University Hospital’s specialist birthmark clinic.
Little Matthew developed a deep cherry-coloured birthmark across his nose just days after he was born but after three bleomycin injections it has almost completely disappeared.
It was only by chance that Matthew, now 18 months, was referred to the specialist birthmark clinic at James Cook, by his Darlington GP.
His parents had the option to wait a couple of years for laser surgery or try the bleomycin injection. As the birthmark was growing dangerously close to his eye they opted to try the bleomycin treatment and Matthew had his first injection at just six months old.
They said: “A lot of thoughts go through your mind as a parent. You notice people staring and you can’t help but worry about whether they will get bullied at school.
“A lot of people have to wait years for laser treatment but we could start the injections straight away.
“It was not dramatic at first but friends and family started to notice a difference and now people mistake the birthmark for a patch of eczema. The difference is amazing.
“We did not expect it to look this good. He’s just a completely different child.”
Discovering the bleomycin treatment has been nothing short of life changing for Trisha.
Trisha, 61, was born with a vascular malformation the size of a pinprick but as she grew up it grew with her, affecting her face and also her tongue.
“I had quite a lot of operations as a child that left me with a lot of scars on my face. I also had laser surgery, but my tongue was never operated on as it was believed to be too dangerous,” said Trisha.
“I suffered from sleep apnea as my airway would get blocked because of the size of my tongue – I had to use a CPAP (continuous positive airway pressure) machine for 10 years. The size of my tongue would also cause me to slur my words so it often sounded as if I was drunk and I would avoid eating out as my tongue would pour with blood if I ate anything sharp. I was very self conscious.”
Trisha’s unusual condition was seen by a number of experts and she was deemed untreatable before she was referred to the birthmark clinic at South Tees Hospitals NHS Foundation Trust for the bleomycin injections. The non-invasive treatment produced some amazing results, reducing Trisha’s tongue back to a normal size and allowing her to get on with her life.
“It’s an absolute miracle. I am much more confident and outgoing now. It’s given me a new lease of life,” said Trisha.
“I just wish this treatment had been available when I was growing up.”
Eight-year-old Rosie was born with a large swelling on her right leg and knee which left her unable to kneel down and often caused her a lot of pain.
Doctors advised that she would be able to have an operation to treat the venous malformation when she was older but then she was referred to South Tees Hospitals NHS Foundation Trust where she was told about a new leading edge treatment – the bleomycin injection.
“I was really pleased when we were offered the bleomycin injections,” said her mum. “We were quite happy to give anything a go. We did not want Rosie to suffer.
“She has had about eight injections and they have made a massive improvement.
“You forget what a difference it has made until you look back at the photographs. It’s surprising how much the swelling has gone down, before it would rub against her other knee. I would certainly recommend the bleomycin treatment to others.
“We were just so lucky that we only had to travel to Middlesbrough. One family we met was travelling all the way from Cornwall for the treatment.”