Throughout the pandemic we delayed announcing a new appeal, simply because it did not feel like the right time to be committing to a project, that we couldn’t be certain we’d be able to fulfil. However, as events and fundraising have returned, we are delighted to share details of our new Smile4Wessex appeal, to fund a second Adult Video Telemetry Bed at the Wessex Neurological Centre and also to provide funding for the ROAR (Risk Of Aneyrysm Rupture) Study.
ADULT VIDEO TELEMETRY BED
The adult epilepsy surgery service is one of the flagship services of the Wessex Neurological Centre, serving the population of Southampton and the region. This service has been running for more than 15 years. Following its launch in 2005 it was one of the largest in the UK at the time, assessing 40 patients per year.
Epilepsy is a common neurological disorder affecting about 1 in 100 people. Approximately 60-70% of these will be seizure free with medication. Others may be refractory and about 1.5% of people newly diagnosed with epilepsy may eventually require surgery, equating to approximately 450 per year in the UK. Surgical treatment of a frequent form of refractory epilepsy, temporal lobe epilepsy, improves outcome (58% seizure free), quality of life and can reduce mortality, for example from sudden unexpected death in epilepsy.
Most patients with refractory epilepsy can be considered for surgery. Refractory epilepsy can arise from various parts of the brain, so the initial hurdle is to understand where it arises in each particular patient. Part of the standard pre-surgical assessment for such patients is Video-telemetry (VT) recording. This is a prolonged EEG recording of the brain’s electrical activity, using electrodes placed on the scalp, with a simultaneous video recording. This typically runs for 5 days whilst an inpatient to capture recordings of the patient’s epileptic seizures. Assessment of these detailed recordings, including the changing EEG patterns and clinical features during the seizures, assist us in establishing where the epilepsy is arising from.
Many patients may not be suitable for resective surgery but other options such as Vagal Nerve Stimulators (VNS) or palliative surgery may be considered. New treatments including implanted intra-cranial stimulators and minimally invasive thermocoagulation or laser therapy are being introduced with success in other centres. Such treatments require detailed intra-cranial VT studies. There is also potential in patient populations, that subjects previously considered not suitable for resective surgery, might now be reconsidered in light of these new treatment options.
This appeal will fund the purchase of a second set of equipment, enabling a second adult VT. The necessary estates infrastructure and IT network connectivity has already been installed adjacent to the current VT bed, when this was relocated in March 2020.
Expanding the bed capacity from one to two would facilitate development of the adult epilepsy surgery service at Southampton. This would allow more timely access to VT, therefore reducing waiting times for both potential epilepsy surgery patients and those having diagnostic studies. It would allow more intra-cranial cases to be performed, thus promoting both an increase in resective surgery and new procedures for patients. It would allow continuation of VT recordings for other patients whilst an intracranial VT (which may take 2-3 weeks) is ongoing. It may also provide some insurance against future potential loss of this local/regional service, were there a national reorganisation of services, similar to that seen in Paediatrics between 2010-2015 when paediatric resective surgery was relocated to a central to Bristol.
The charity previously provided funding of £145,000 to build a Paediatric Video-Telemetry Suite at the WNC. The facility, which has been in use since February 2009, has proven to be a tremendous addition to the WNC’s capability to assess and treat children with severe epilepsy, so we were delighted to have the opportunity to raise a further £64,000 to expand the Adult Epilepsy Service.
ROAR STUDY (RISK OF ANEURYSM RUPTURE)
Brain aneurysms are more common than most people think. About 3% of adults will have one, even if many don’t know about it. Often they discover them accidentally when they have a scan, usually for unrelated reasons. Fortunately, most cause no symptoms and no problems and people can live a normal life without treatment. However, some will burst and cause bleeding on the brain which can be catastrophic. The question is, who will that unlucky person be? If only we knew, we could treat them before their aneurysm bursts.
Unfortunately, it is not that simple. Studies can’t agree how frequently a typical aneurysm bursts, let alone accurately pick out ones that will burst with high or low frequency. Estimates of bursting for a typical aneurysm range between 0 and 30% over 30 years. Imagine that was you? What you would do? 0% and you’d be pleased you can avoid a complex procedure on your brain. 30% and you would be rushing to get it treated. But what if you were told we don’t know and it could be either or anything in between!
That is the position thousands of people around the country find themselves in. It leads to huge amounts of anxiety and distress and no doubt some patients who opt not to be treated suffer a bleed, while others who are treated may have never had a bleed if they left their aneurysm alone.
Help to resolve this with Smile4Wessex!
Smile4Wessex is supporting the team at Wessex Neuro running the ROAR study (Risk Of Aneurysm Rupture). The study will answer these pressing questions for patients and more. To read more information about the study, please click HERE
