Pioneering surgery ends debilitating pain for man with rare condition

A man is celebrating three years being free from debilitating facial pain after pioneering surgery helped him to get his life back on track.

Julian Belsom, from Folkestone in Kent, is thanking staff from Guy’s and St Thomas’ and King’s College Hospital for successfully treating his extremely painful and rare headache disorder, which left him in near constant agony and unable to work.

In October 2014 Julian woke up with what he thought was toothache. He visited the dentist on numerous occasions but none of the treatments he was offered cured the pain.

The excruciating pain would come in bursts which lasted around 30 seconds to two minutes and would happen many times throughout the day. On a bad day, it could occur hundreds of times.

Doctors in various different hospitals treated him for the pain but nothing prevented it from happening for longer than a month.

Julian, 50, said: “It was unbearable. I thought my head was going to explode. It felt like my teeth were about to crack at any moment.

“I’d have some pain free days and after one treatment I didn’t have pain for a month, but every time it returned and came back with a vengeance. Some days it was so bad I couldn’t walk, talk, sleep, eat or even move without it causing pain. My mental health suffered so badly to the point I was contemplating suicide.

“I couldn’t work because the pain was so immense, which meant I wasn’t paid and I couldn’t keep up with my mortgage repayments, so I lost my house. It felt as though my whole life was falling apart.”

Throughout everything, Julian’s wife Annette was the driving force behind finding specialists to see him. She got in touch with the Guy’s and St Thomas’ Headache and Facial Pain Service within the Pain Management Centre and in January 2018, Julian had an appointment with consultant neurologist Dr Giorgio Lambru and Mr Sinan Barazi, a consultant neurosurgeon at King’s College Hospital. The two work in partnership alongside two other consultants in one of the few national complex pain services in the UK, specialising in the diagnosis and treatment of patients with severe head and facial pain conditions.

They confirmed that Julian was suffering from a rare disorder called short-lasting unilateral neuralgiform headache with conjunctival injection and tearing, known as SUNCT syndrome.

SUNCT is a severe form of headache and facial pain that shares similarities to a nerve pain condition trigeminal neuralgia and to cluster headaches. The pain is described as stabbing, electric-shock like, excruciating in severity and occurring multiple times a day, often with little respite between painful attacks.

SUNCT can be very hard to diagnose due to its similarity to other headache and facial pain conditions. In Julian’s case, an artery was compressing the trigeminal nerve on the side of his brain, which the facial pain team agreed was the most likely cause of his extreme and relentless pain.

Dr Giorgio Lambru has researched the condition for many years and after discovering similarities to trigeminal neuralgia, began to work alongside Mr Barazi to offer a surgery to patients with SUNCT. The operation is more commonly used to treat trigeminal neuralgia.

The surgery was offered to Julian, who was told that because the procedure is relatively new for this condition, they couldn’t guarantee how effective it would be or how long it may last. Desperate for any respite from the pain, Julian said yes immediately.

In October 2018, Mr Barazi conducted the operation, which involved going into Julian’s skull to the back of the brain, separating the artery from the trigeminal nerve, and placing a piece of polytetrafluoroethylene wool (Teflon) between the two so they no longer touched each other.

As soon as Julian woke up from the procedure he was pain free. “It has been absolutely magic,” Julian said. “Just a day after my operation I was discharged from hospital and was watching the football at home by the afternoon like nothing had happened.

“Since the operation, I’ve been completely pain free. I was able to start work again and begin getting my life back on track. It really has changed everything.”

To show his appreciation for the work of the team who have cared for him, earlier this year Julian walked along the Jurassic Coast, on the English Channel coast of southern England, to raise money for Guy’s and St Thomas’ Charity.

The 34 mile walk took 15 hours to complete and is something Julian couldn’t have even considered previously. Julian said: “It was a really difficult walk but something I’ll never forget.

“The team who cared for me work so tremendously hard so I’m pleased to give something back. The surgery has given me a new lease of life and I can’t thank them enough.”

Julian is still under the care of Guy’s and St Thomas’ and has check-ups every year, but so far has seen no change in his condition since his procedure.

Dr Giorgio Lambru said: “It is always heartening to hear patients doing so well following their treatment, particularly for patients like Julian whose life was effected so drastically by their condition.

“The surgery which Julian had is one of the few treatments that is the closest to a cure for a neurological pain condition, and we are pleased to be one of the few specialist centres to offer this type of surgery and other advanced treatments to severe cases of headache and facial pain.

“I’d like to congratulate Julian on his fundraising walk and thank him for raising money to support the work of Guy’s and St Thomas’.”

You can donate to Julian’s fundraiser by visiting JustGiving.