5 September 2019

Man in constant pain from incurable neurological condition thanks surgeons who have given him his quality of life back

A young man who has lived in constant pain after being diagnosed with a rare disabling condition that causes involuntary spasms and movements throughout his entire body is thanking a team of specialists at Sheffield Teaching Hospitals NHS Foundation Trust after having life-changing deep brain stimulation surgery.

Liam Carbery, 23, of Dudley, first started experiencing muscle spasms with pain at the age of two. By the age of 14 the condition deteriorated further, with the part of his brain being responsible for movement causing agonising symptoms such as bending of the trunk and splaying of his legs.

In 2013, at the age of 17 Liam was diagnosed with generalised dystonia, a rare incurable condition that causes abnormal postures of the limbs or trunk.

He spent the next few years trying a number of trial medications and therapies, but it was all to no avail, and his condition got steadily worse with his spinal cord beginning to stretch over his spine, leading to disc degeneration and subsequent weakness in both his hands. The muscles in his throat that allow foods and liquids to move from the back of your mouth to your throat also started to contract, making eating and drinking impossible, with a small feeding tube inserted directly into his stomach through his abdominal wall for nutritional support.

In 2017 he was referred to the world-renowned neurosurgery team at Sheffield Teaching Hospitals, who were trialling a new type of surgery called deep brain stimulation.

“I was admitted for five days of assessments with neurologists, specialist nurses and a psychologist to have functional and structural imaging of the brain under general anaesthetic. A month later I received the news that I would be listed for this potentially life-changing surgery. Even though brain surgery is very invasive, me and my family thought this was great as we now had some hope that this operation would give me some quality of life back,” Liam, who believes he suffers with generalised dystonia due to being born prematurely and had the deep brain stimulation surgery on 24 May 2018, said.

Deep brain stimulation is a specialist neurosurgical procedure undertaken by only a handful of leading centres in the UK. During the surgery a team of neurosurgeons, neurologists, neuropsychologists, neuroradiologists and specialist nurses skilfully implant electrodes on either side of the brain.

Once implanted these electrodes are then connected to a ‘brain pacemaker’ device known as a neurostimulator. This in turn sends electrical impulses to specific targets in the deep structures of the brain that are thought to be responsible for controlling movement. Although it is not a cure, patients see gradual improvements in the abnormal signalling in the brain that causes involuntary muscle spasms, pain and contractions.

For Liam it’s meant the end of a life sentence of constant pain.

“Thanks to this surgery I have seen some major improvements in my symptoms. The severe tremor in both my hands has stopped and my speech has improved. My restless legs have also calmed a lot. Don’t think that my life isn’t incredibly difficult because it still is, but I have some quality of life back and I’d like to thank the specialist team at Sheffield Teaching Hospitals for giving me some relief from this disabling syndrome.”

Sheffield Teaching Hospitals first started trialling deep brain stimulation to treat several disabling neurological conditions such as Parkinson’s Disease and dystonia in 1999.

Mr John Yianni, a consultant neurosurgeon at Sheffield Teaching Hospitals NHS Foundation Trust, said: “Until recently there were no useful treatments that could be offered to patients like Liam, but advances in technology mean that it is now possible to treat more patients who would previously have been deemed to have no hope of any relief from this terrible, progressive, intractable condition. To date we’ve treated over 500 patients with deep brain stimulation, and we are one of the principal centres in the UK to be providing this highly specialist service to our patients.”


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