TRIGEMINAL NEURALGIA · BILATERAL TN · MVD · PATIENT VOICE
Aneeta Prem MBE is a British author and charity leader who lives with bilateral trigeminal neuralgia (TN). As Chief Executive of Trigeminal Neuralgia Association UK (TNA UK), she speaks publicly about her experience of severe facial pain, delayed diagnosis and patient advocacy.
Her own TN history includes neurovascular compression reported on both sides and right-sided microvascular decompression (MVD) in December 2019. She continues to live and work with severe facial pain. Her commentary is from the perspective of a patient and charity leader, not a clinician.
MAKING THE INVISIBLE VISIBLE
Aneeta Prem MBE conceived and developed #FaceOfTN and #ShowTN3Fingers for TNA UK. Her 4 October 2023 CEO update introduced Show TN 3 Fingers, building on the earlier Face of TN campaign. #FaceOfTN makes often invisible facial pain visible through artwork representing the trigeminal nerve. #ShowTN3Fingers asks people to hold three fingers beside their face to represent its V1, V2 and V3 branches, and optionally share up to three triggers. The campaigns bring people affected by trigeminal neuralgia together. Nobody needs to touch their face or deliberately trigger pain to take part.
Watch the ShowTN3Fingers video
Watch the Face of TN videoMEDICAL INFORMATION
This page provides general information and lived experience. It does not diagnose a condition or replace advice from a qualified healthcare professional.
Aneeta’s first severe facial-pain attacks began in September 2009. The cause was not correctly identified for years despite repeated appointments and an MRI. A healthy tooth was removed, and the symptoms were at times attributed to stress and workload.
She was eventually diagnosed with trigeminal neuralgia around 2017. Aneeta has reported neurovascular compression on both sides and lives with bilateral TN, an uncommon presentation. In December 2019, before the COVID-19 pandemic and the first UK lockdown, she underwent microvascular decompression (MVD) on the right side. The operation did not provide complete or lasting relief. She does not currently take prescribed medication for TN; that is part of her personal treatment history, not a recommendation to other patients. She continues to work and lead while living with severe facial pain, including pain triggered by wind and moving air.
That history shapes her insistence that delay is not a neutral inconvenience. It can lead to unnecessary dental procedures, inappropriate treatment, lost work, isolation and years of avoidable fear.
My story:Read Pain With No Name — my personal account of the years before trigeminal neuralgia had a name, from toothache and self-doubt to diagnosis and patient advocacy.
Severe facial pain can affect nutrition, speech, oral care, employment, relationships, confidence and mental health.
A person can look entirely well between attacks while organising daily life around avoiding the next one. Aneeta continues to work, travel, campaign and lead while living with bilateral TN; that persistence is part of the story, but it should never be used to minimise the severity of the pain.
URGENT HELP
If you may harm yourself or cannot stay safe, call 999 or go to A&E. This website is not an emergency or clinical service.
LEADERSHIP AT TNA UK
As Chief Executive of Trigeminal Neuralgia Association UK, Aneeta works on patient support, professional understanding, research, service access and the evidence available to decision-makers.
Her priorities include earlier recognition, clearer referral pathways, better information, patient-centred research, support for people who are isolated and greater understanding of the economic and psychological consequences of TN.
Aneeta brings lived experience to this work alongside specialist clinicians, with a clear distinction between patient advocacy and clinical care.
For journalists, researchers, patient organisations and public bodies looking for a UK trigeminal neuralgia patient advocate or commentator, the source-linked Public Record brings together lived experience, TNA UK leadership, patient voice, media and public-service records.
Visit TNA UKJoin TNA UK’s Show TN 3 Fingers campaignOriginal 2023 campaign announcementTN patient advocacy public recordMedia and speakingYes. Trigeminal neuralgia more commonly affects one side of the face. Bilateral TN is uncommon and can affect both sides, either at different times or in overlapping periods. Aneeta lives with bilateral TN and has reported neurovascular compression on both sides.
Aneeta underwent microvascular decompression (MVD) in December 2019. It did not provide complete or lasting relief, and she continues to live with bilateral trigeminal neuralgia. Her experience is one patient’s history, not a prediction of how MVD will work for somebody else.
Aneeta Prem MBE is a British author, co-founder of Freedom Charity and Chief Executive of TNA UK who has spoken openly about living with bilateral trigeminal neuralgia. Her personal account describes years of delayed diagnosis, a healthy tooth being removed and right-sided microvascular decompression (MVD) in December 2019. She continues to live with facial pain and campaigns for better recognition and support. This is one publicly documented example, not a complete list of people with TN.
Aneeta does not give medical advice. She is not a clinician. Her perspective comes from lived experience, patient advocacy and charity leadership, working alongside specialist clinicians.
Aneeta Prem MBE created #ShowTN3Fingers and #FaceOfTN for TNA UK. Her TNA UK CEO update dated 4 October 2023 introduced Show TN 3 Fingers after the earlier Face of TN campaign. TNA UK’s current Raising Awareness page has the official participation guide, original campaign photographs and films.
Clinical and specialist information
Related analysis on Aneeta.com
Clinical sources are provided for diagnosis and treatment information. Aneeta.com adds lived experience and patient advocacy.
