Trigeminal Neuralgia Association (TNA UK)
The conference was held at the Holiday Inn Hotel, Carburton Street, London, in two adjoining rooms (the Oxford & Cambridge business suites). 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.
The day was introduced by Mr Adrian Hale, chair of the Trigeminal Neuralgia Association (TNA UK), who welcomed everyone to the conference, which he hoped would be an enthralling day.
Session 1: Diagnosis
Professor Zakrzewska, chair of the Medical Advisory Board for TNA UK, started the day off with her talk on diagnosis. This was an interactive and engaging session that focused on integrating HCPs and patients. She invited four patients, with different diagnoses and history, 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). The overall impression given was that while every individual may have shared similarities in their presentation, each person will experience it differently. 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 the usefulness of MRI scans 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 & nerve.
- A compression between the vessel & nerve.
- A compression and pushing away of the nerve.
The session demonstrated how far imaging has come and its necessity in treatment planning for prediction of success in MVDs.
Rachel Coates and the University of Leeds
Dr Rachel Coats, a psychologist, made an appeal relating to a potential study on cognitive and motor impairment whilst on and off of medication. She asked members to contact her by email, if they wished to participate. email@example.com
Chairman Adrian Hale delivered his annual report, highlighting all the work that the TNA UK had completed over the past year. The intention to amend the constitution by adding an object on supporting research was discussed. With some suggestions from the TNA UK membership, the motion was moved.
As per charity guidelines, three TNA trustees had to resign (and then were re-elected onto the committee). This year, it was Jeannette Moore, Doug Moore and Glenn Davies.
Dr Robert Coveney demonstrated the new website to the membership and professionals, highlighting how information had been made precise, concise and easier to access. Suggestions were offered by the membership which have been considered and applied as deemed necessary.
Session 3: 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 because the drug stopped providing pain relief.)
Meanwhile, the HCPs discussed what they believed were the best first and second line therapies for trigeminal neuralgia. The general consensus was carbamazepine should be the first line drug, as per NICE guidelines.
Professor Zakrzewska chaired this session and discussed the importance of establishing these guidelines, especially in the light of many patients not being prescribed carbamazepine as the first line drug. It highlighted the necessity of referring them to HCPs for more accurate treatment.
Session 4: Outcome measures in TN and why are they important?
An interactive session by Dr Richel Ni Riordain that 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 and 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
- Generally better social interactions.
Through expert patient panels, such as the example conducted today, reviewing literature and further discussions with healthcare providers, this 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 5: Surgical outcomes
The final session of the day had a harrowing, insightful and eye-opening beginning. Anne Eastman related her journey through diagnosis and treatment. Her tale, which spoke of her misdiagnosis and journey through fear into pain-free life, was hard-hitting.
Mr Owen Sparrow, a retired neurosurgeon, and his colleague, Imran Noorani, discussed the surgical outcomes based on 30 years of data they have followed up. Mr Sparrow summarised the different surgical modalities that were used for the treatment of TN, including MVD, internal neurolysis, various rhizotomy procedures, etc. Microvascular decompressions (MVD) are one of the only surgeries that have a good long-term reliable data (70% success of being pain-free at 5 years).
Mr Noorani highlighted that older patients tended to have less MVDs and more needle-based procedures. He highlighted that if there is a reoccurrence of pain, usually the pain returns 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.
The final part of this session was presented by Professor Tilly Loecher who spoke about stereotactic radiosurgery (sometimes called gamma knife). This is where a high dose of radiation is delivered into a specific location. 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. In discussing outcomes of stereotactic radiosurgery, satisfaction varied based on pain relief and the side-effects thereafter. A high proportion of patients will get numbness following treatment and a 5% proportion will get ‘painful numbness’ or dysesthesia.
The sessions all highlighted the need to carefully plan, weigh up the choices and not to rush into anything.
Closing of the conference
Mr Adrian Hale, chairman, closed the conference, not before thanking all the speakers for their time today and the membership for coming. Mr Owen Sparrow was presented with an engraved letter-opening knife as a thank you for his services to TNA UK and helping combat trigeminal neuralgia.
The present report has been provided by Dr Robert Coveney, Dental Surgeon and Trustee