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.
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.
“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.”