Alder Hey leads the way in treating Dystonia with pioneering technology

Alder Hey Children’s NHS Foundation Trust has made history by performing Deep Brain Stimulation (DBS) using a new advanced device to treat dystonia, marking the first time in the world this innovative technology has been used on a child.

The pioneering DBS procedure, which lasted four hours, was carried out on eight-year-old Hayley from Nantwich, who was born with dystonic cerebral palsy. Led by Alder Hey’s Consultant Neurosurgeon, Mr Jonathan Ellenbogen, the surgical team included specialist surgeons, an anaesthetist, scrub nurses, operating room nurses, and surgical technicians.

Dystonia is a lifelong neurological condition characterized by uncontrolled and often painful muscle cramps and spasms, severely impacting a child’s quality of life by making daily tasks more painful and challenging.

Mr Ellenbogen and his team used new BrainSense technology that has been developed by Medtronic.

They inserted insulated electrodes into a very specific location in the brain responsible for movement control which can be as small as a grain of rice.

These brain electrodes are then connected by a wire under the skin through to a pulse generator device / battery which is implanted in the upper chest area or the abdomen.

The battery is very similar to a pacemaker in that it uses  electrical pulses to  modify the signals causing the symptoms of dystonia. As a result, involuntary movements/spasms and pain caused by dystonia can be reduced.

Hayley, the first patient to undergo the procedure with this new device, is non-verbal and experiences involuntary movements affecting her entire body due to her dystonic cerebral palsy.

Hayley’s dad Gareth said:

“If you think of a person as a light, if you turn the light on, it stays on until you switch it off, whereas Hayley’s condition means she ‘flickers’.

“It can be really frustrating as Hayley can’t tell us what she wants or needs although we know she loves being tickled as she laughs and smiles. We’re hoping this operation will help control her movement more and we get more of those amazing smiles.” 

Mum Emma said

“We think of the BrainSense tech as a dimmer that we can set to the perfect setting for Hayley. We’re excited about what could be.”

Consultant Neurosurgeon at Alder Hey, Mr Jonathan Ellenbogen said:

“The new BrainSense technology captures brain activity  data direct from the  leads  implanted into the patient’s brain. This helps us to accurately detect and analyse the brain signals that are causing the dystonia.We can access this data and adjust the deep brain stimulation (DBS) settings — personalising the therapy for the best possible outcome.

“This is a huge step forward and something we couldn’t do before. This is also particularly important in patients who are non-verbal. It also has other benefits including the smallest battery available (which makes it suitable for children, as well as adults) which is rechargeable. 

“DBS isn’t suitable for all patients with dystonia, but for some children and young people it can be life-changing. The device is switched on a couple of weeks after the procedure and although results aren’t instantaneous, we should be able to see improvements within a few  months and we’re hoping that Hayley will have a much better quality of life as a result.”

Following the procedure, Hayley and her family spent a few days recovering at Alder Hey before returning home to Nantwich.

Alder Hey’s pioneering use of BrainSense technology in treating dystonia represents a significant leap forward in pediatric neurosurgery, offering hope and improved quality of life for children like Hayley.

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