The day was attended by a wide range of healthcare practitioners (HCPs) ranging from neurosurgeons, MS nurses, dentists to budding students, along with a large number of patients and carers.
Session 1: Diagnosis
Prof Zakrzewska invited four patients, with different diagnoses and histories, to speak about their prior or current symptoms. The four patients respectively had experienced; typical TN, atypical TN, SUNA and TN secondary to multiple sclerosis. The histories were put before a medical panel containing a neurosurgeon (Mr Owen Sparrow), a neurologist (Prof Turo Nurmikko) and a consultant of oral surgery (Prof Tilly Loescher).
Following this interesting Q & A, Professor Zakrzewska continued her talk which highlighted the difficulty in reaching diagnosis (e.g. how cracked tooth syndrome and TN have a lot of overlap in their sensations). This leads to a difficulty in creating a simple questionnaire or a diagram that represents any one person’s experience.
Session 2: What does brain imaging tell us about trigeminal neuralgia?
Professor Turo Nurmikko presented on MRI scans and their usefulness in diagnosing and predicting treatment outcomes for trigeminal neuralgia. The session highlighted how MRIs have led to a reduced need to just open and ‘explore’ the posterior fossa. MRIs rarely gave false negatives (no compression/contact of the nerve). With the advancement of the MRI technology, it is now possible to differentiate between:
- A contact between vessel and nerve.
- A compression between the vessel and nerve.
- A compression and pushing away of the nerve.
Rachel Coates & the University of Leeds
Dr Rachel Coates, a Psychologist, made an appeal for potential study on cognitive impairment whilst on and off of medication. She appealed to members to contact her by email, r.o.a.coats@leeds.ac.uk, if they so wished to participate.
Session 3: Additional support for patients – HCPs only
Two Clinical Nurse Specialists, Artemis Ghiai and Mandy Lodge talked about their roles in facilitating patients through all aspects of trigeminal neuralgia. Jillie Abbott from the Trigeminal Neuralgia Association UK explained about the essential support provided by TNA UK.
Session 4: Medications
This session focused on group activities. The membership jointly wrote down their first, second, third and – if applicable – their fourth prescribed medications. The effectiveness of each was discussed alongside why the medication was stopped (e.g. side effects or the drug stopped providing pain relief.
Meanwhile, the HCPs discussed what they believed the best first and second line therapies were for trigeminal neuralgia. The general consensus was carbamazepine should be the first line, as per NICE guidelines.
Professor Zakrzewska discussed the importance of establishing these guidelines, especially in the light of many patients not being prescribed carbamazepine as the first line.
Session 5: Outcome measures in TN & why they are important
An interactive session by Dr Richel Ni Riordain honed in on what TN patients feel are the best measures of ‘success’ from a medication. Some examples included:
- As few side effects as possible
- Better function in a work environment & being able to carry out daily activities
- Complete and long lasting remission from pain
- No interactions with other drugs
- Minimal or no loss of effectiveness with time
- General better social interactions
These expert patient panels, reading through literature and further discussions will allow us to be able to develop a true outcomes criterion for trigeminal neuralgia. Hopefully, this will lead to a questionnaire to help best plan, effectively regulate and measure outcomes.
Session 6: Surgery for TN
Anne Eastman related her story of TN. Anne’s tale, which spoke of her misdiagnosis and journey through fear into pain-free life, was hard hitting.
Mr Owen Sparrow, retired neurosurgeon, and his colleague, Imran Noorani, then discussed the surgical outcomes based on 30 years of data they have followed up. Mr Noorani highlighted that older patients tended to have less MVDs and more needle-based procedures. He highlighted that if pain reoccurs, usually it is at a much reduced level which means that medication is usually effective. Long term pain relief statistics are the same, no matter what vessel (be it vein or artery) is moved.
Finally, Professor Tilly Loescher spoke about stereotactic radiosurgery (sometimes called gamma knife). Originally designed for minimally invasive treatment of brain tumours, it has now evolved for use in other conditions, such as TN. Currently, TN is only commissioned (on the NHS) to be treated in two units – London & Sheffield. A high proportion of patients will get numbness following treatment and a 5% proportion will get ‘painful numbness’ or dysesthesia.
