Patient stories: Jeff free from ‘suicide disease’ thanks to specialist surgery
Hull based Jeff suffered from a rare cranial nerve condition that left him unable to eat, talk or even brush his teeth without excruciating pain.
After battling with Trigeminal Neuralgia for over five years Jeff Axe from Hull was successfully treated at the Centre for Spinal and Neurosurgery at Nuffield Health Leeds Hospital.
The condition is often referred to as ‘suicide disease’ as, due to its reputation for being one of the most painful conditions known to mankind, some sufferers have resorted to suicide. Jeff explains: ‘My day to day life was severely compromised; I could only clean my teeth for about 20 seconds and screamed whilst doing it. Eating a bowl of cereal would sometimes take almost an hour and I couldn’t eat anything that required a degree of chewing. I could talk from 5 seconds to 5 minutes, but at some point I would be overcome with pain and had to stop. When I did talk, it was so quiet, because the vibrations would just hurt my face.’
The trigeminal nerve is the largest of the cranial nerves and due to an artery sat on that nerve Jeff experienced life changing pain. Jeff has a condition called Trigeminal Neuralgia. This is a chronic pain disorder; it can result in episodes of severe, sudden, shock-like pain in one side of the face that lasts for seconds to a few minutes. Around 10 people in 100,000 in the UK develop it each year resulting in crippling pain in many cases.
Consultant Neurosurgeon Mr Kenan Deniz at the Centre for Spinal and Neurosurgery, Nuffield Leeds explains: ‘Jeff Axe came to see me in clinic with what can only be described as agonising, lancinating pain radiating into his face. This was classical of Trigeminal Neuralgia. During our consultation he had to stop talking multiple times to wait for the pain to pass but unfortunately there were multiple exacerbations even during this short period. It’s fair to say that the condition had decimated every aspect of his quality of life and medication was simply making no difference at all.’
Mr Deniz continues: ‘I performed a Microvascular Decompression. This surgical procedure really can radically transform patient’s lives and essentially give them their lives back. And whilst there are risks, as with any procedure, compared to the difference it can make to people’s lives I would say the risks are relatively small in comparison. As a surgeon, seeing the expression on the patient’s face when they realise the pain has gone and hearing how their lives have transformed as a direct result of this surgical procedure is incredibly rewarding.’
Jeff was admitted on a Monday and was talking, brushing his teeth and enjoying meals – pain free - by Tuesday. Jeff said: ‘That morning, I could clean my teeth longer than 20 seconds, for first time in years. I was so overwhelmed and pleased I could clean my teeth pain-free, that I cleaned them again, just because I could.’
Find out more about Trigeminal Neuralgia and treatment options (opens in YouTube)
Read more about our Centre for Spinal and Neurosurgery
Read more about Mr Kenan Deniz