Trigeminal Neuralgia

Jim Fitzpatrick Excerpts

Tuesday 27th July 2010 Commons Chamber

[Jim Fitzpatrick (Poplar and Limehouse) (Lab)]

I am very pleased to have secured this debate, and I hope it might provide some comfort to many people across the UK who suffer from the condition of trigeminal neuralgia or TN. I should declare my interest: I have been a fellow sufferer. It is an interest I would gladly disown and, indeed, I fairly recently had neurosurgery to try to achieve just that—to disown it. I am grateful to the Minister for being in his place, and I am sure that he is as pleased as I would have been in his position to be closing the sitting for the Government before the recess.

If I may, I will outline some background to the condition, because part of the reason for securing this debate was to raise awareness of TN. Then I would like to express a little appreciation for those trying to deal with TN and help the sufferers. I will conclude with a few requests of the Minister, of which I have given him prior notice.

The Trigeminal Neuralgia Association UK—TNA UK—of which I am a member, is a support group for people suffering from an agonisingly painful neurological condition. Trigeminal neuralgia affects one or more of the three branches of the trigeminal nerve in the head and has been called “the worst pain known to man.” It is characterised by sudden, excruciating spasms of electric shock-like pain, usually just on one side of the face. Thankfully, it is a relatively rare condition thought to affect less than 0.1% of the population, although the latest TNA indications are that there are 12.6 sufferers per 100,000 people in the UK. It is more common in women than men, and although it usually affects people aged 50 or over, the association is coming across many younger sufferers, even young children.

I remember my first referral to a maxillofacial consultant at the Royal London hospital. He asked me to describe my symptoms. I told him and the medical students who were with him, “It makes me cry”. “There you are,” he told his team, “a classic definition of the condition. You either have a London bus parked on your foot or you have trigeminal neuralgia.”

Apparently there is nothing new about TN. It has been documented from the times of the Greeks and Romans in the 1st century, but because of its rarity research has been spasmodic and it is still a little-known condition often misdiagnosed due to lack of knowledge among some medical professionals.

The exact cause of the condition is unknown, but it is thought to be as a result of damage to the root of the nerve at the base of the skull where it emerges from the brain stem and often because the nerve is being compressed by a vein or artery. This damage causes the nerve to malfunction and send messages of intense pain to the brain in response to just a light touch on a “trigger” area of the face.

The pain can last from a few seconds to a few minutes, and there can be many bursts of pain in quick succession. Many patients suffer for months or years without correct treatment, and even undergo extensive, unnecessary dental work before the condition is correctly diagnosed. There can be periods of complete pain remission, but these gradually become shorter and shorter, and patients therefore live in constant fear of a severe attack of debilitating pain.

Any facial movement, such as eating, talking, smiling or kissing, shaving, washing the face or brushing one’s teeth can provoke an attack, and that can completely destroy any quality of life. There were several occasions in this place when I was preparing to speak and was fearful that I would be prevented from doing so because of the sense of an impending attack. That might have improved others’ quality of life in not having to listen to me, but for some patients being unable to live normally leads to their becoming isolated and depressed, sometimes to the point of suicide.

Normal painkillers do not bring any relief and initially anticonvulsants used to treat epilepsy are prescribed. However, these often have unpleasant side effects and lose their efficacy with time so ever larger doses are required. When the medication is no longer effective, or if the side effects cannot be tolerated, various surgical procedures can be considered, although these carry a risk of complication and results are not always long lasting. The data on the success of surgical procedures are only now being assessed and will be more accurately evaluated in the future. The most effective operation is a micro-vascular decompression or MVD—major surgery that involves moving the offending blood vessel or vessels away from the nerve, close to the brain stem. Unfortunately, TN has a habit of recurring, and even this operation does not always deliver long-term relief.

I should at this point express my sincere thanks to the excellent Mr Neil Kitchen and his first-class team at the national hospital for neurology and neurosurgery in Queen’s square, London. He operated on me last December, and I am happy to say that since then, when I was in considerable distress, my condition is much improved and my need for medication is now minimal. I should also say thank you to my wife, Dr Sheila Fitzpatrick, without whose care, love and attention a difficult experience would have been much more painful.

The Trigeminal Neuralgia Association was formed in 1999 by a patient and a doctor, Professor Joanna Zakrzewska. It specialises in treating TN, offers support and encouragement to sufferers, and became a registered charity in 2002. Professor Zak, as she is fondly known for obvious spelling and articulation reasons, is a beacon of hope to all TN sufferers. Worldly and wise, she is the essence of reassurance, and on her own or sometimes allied to Mr Kitchen and other surgeons, she offers sufferers real hope.

The aims of the association are to continue to provide information and offer support to members, and to raise awareness of TN among medical professionals and the general public. TNA UK receives no Government or corporate funding and is entirely dependent on membership fees and donations. All the association’s officers give their time for free, and TNA UK is now in contact with more than 1,000 patients, receiving many new inquiries each week. The officers of the association—the tireless chairman Jillie Abbott, supported primarily by Mr George Cunningham, a former hon. Member and treasurer of TNA UK, and membership officer Mr Clive Clifton—and numerous other generous individuals volunteer to spread the word, helping sufferers and raising awareness. They are all very much appreciated because of their efforts. The association can be reached by searching the web for TNA UK.

I mentioned earlier the misdiagnosis of TN as dental problems. I am pleased to report that the British Dental Association has acknowledged that its members can help in this regard. I am told that it plans to commission an article on facial pain for its British Dental Journal, and is considering a session on facial pain at next year’s BDA conference. We in TNA UK will be happy to do all we can to assist with that, and we are grateful to the BDA for looking at the issue so seriously. I have also written today to the BDA to seek confirmation of the initiatives.

I would be very grateful if the Minister advised the House on the following matters. In his briefing for this debate, have his officials acknowledged that there is an awareness issue? Notwithstanding the rarity of the condition, greater familiarity among medical and dental practitioners would save money and, more importantly, reduce suffering. TNA UK is not asking for funding, although that would be welcome—if the Minister has his cheque book, we would like to see it.

As I have said, the association volunteers work very hard. However, can the Minister advise whether there is anything that TNA UK can do to help additionally promote awareness of trigeminal neuralgia within the NHS family? Is there anything that the NHS can do specifically to support Professor Zak in her research into the condition and surgical outcomes? Finally, TNA UK and individual sufferers would welcome any advice that the Minister might have in respect of their condition and how their overall situation might be improved.

I am grateful for the opportunity to have this debate and I look forward to the Minister’s response.