WHAT TOOK PLACE AT OUR MEETING: JULY 4th, 2017
A. MEDICINES UPDATE :
Our Nurse Helen talked about Medications that are not available any longer ( a list of what was mentioned will be available here soon ) .
We also talked about how AEDs work. There’s a really good film to watch by Epilepsy Research UK, presented by Chair of Trustees, Dr Graeme Sills, who gives you a clear picture of the type of drugs that are used in epilepsy and how they work.
B. NEW 7T MRI SCANNER IN CARDIFF
We talked about a new 7T MRI at Cardiff University, that is now being used for Epilepsy and other conditions. The BBC made a film about this and we showed it in the group, you can watch it via this link:
The world’s most detailed scan of the brain’s internal wiring has been produced by scientists at Cardiff University.
The MRI machine reveals the fibres which carry all the brain’s thought processes.
It’s been done in Cardiff, Nottingham, Cambridge and Stockport, as well as London England and London Ontario.
Doctors hope it will help increase understanding of a range of neurological disorders and could be used instead of invasive biopsies.
Fergus Walsh (BBC Journalist) volunteered for the project – not the first time his brain has been scanned, he says.
In 2006, it was a particular honour to be scanned by the late Sir Peter Mansfield, who shared a Nobel prize for his work on developing Magnetic Resonance Imaging, one of the most important breakthroughs in medicine.
He scanned me using Nottingham University’s powerful new 7 Tesla scanner. When we looked at the crisp, high resolution images, he told me: “I’m a physicist, so don’t ask me to tell you to whether there’s anything amiss with your brain – you’d need a neurologist for that.”
I was the first UK Biobank volunteer to have their brain and other organs imaged as part of the world’s biggest scanning project.
More recently, I had my brain scanned while playing computer games, as part of research into the effects of sleep deprivation on cognition.
So my visit to the Cardiff University’s Brain Research Imaging Centre (CUBRIC) held no particular concerns.
The scan took around 45 minutes and seemed unremarkable.
A neurologist was on hand to reassure me my brain looked normal.
My family quipped that they were happy that a brain had been found inside my thick skull.
But nothing could have prepared me for the spectacular images produced by the team at Cardiff, along with engineers from Siemens in Germany and the United States.
The scan shows fibres in my white matter called axons. These are the brain’s wiring, which carry billions of electrical signals.
Not only does the scan show the direction of the messaging, but also the density of the brain’s wiring.
Another volunteer to be scanned was Sian Rowlands who has multiple sclerosis.
Like me, she is used to seeing images of her brain, but found the new scan “amazing”.
Conventional scans clearly show lesions – areas of damage – in the brain of MS patients.
But this advanced scan, showing axonal density, can help explain how the lesions affect motor and cognitive pathways – which can trigger Sian’s movement problems and extreme fatigue.
Prof Derek Jones, CUBRIC’s director, said it was like getting hold of the Hubble telescope when you’ve been using binoculars.
“The promise for researchers is that we can start to look at structure and function together for the first time,” he said.
The extraordinary images produced in Cardiff are the result of a special MRI scanner – one of only three in the world.
The scanner itself is not especially powerful, but its ability to vary its magnetic field rapidly with position means the scientists can map the wires – the axons – so thinly it would take 50 of them to match the thickness of a human hair.
The scanner is being used for research into many neurological conditions including MS, schizophrenia, dementia and epilepsy.
My thanks to Sian, Derek and all the team at CUBRIC.
Follow Fergus on Twitter.
C. BBC RADIO 5 LIVE EPILEPSY FILM
BBC Radio 5 Live have released a video – 5 things to know if you love someone with epilepsy. It is a moving story about a mum of three Rachael. All three of Rachael’s children have epilepsy and they can sometimes have up to ten seizures a day. “You never know when your child might start having seizures,” said Rachael. “If you’re able to know what a seizure looks like, it might just take that fear away from you slightly.”
Watch the film here : http://www.bbc.co.uk/programmes/p057d2r3
D. WHAT IS THE VNS ?
We talked about the benefits of the VNS ( Vagal Nerve Stimulator ) in Epilepsy. A few of the members of the group have it implanted. They talked about their own experience of it, whilst other asked questions. Our Nurse Helen explained what it did.
E. OUR NEXT MEETING
Our Next meeting takes place in September, the 1st Tuesday of the month, from 7PM. We shall have a speaker from the hospital. More details will be added here soon.