Epilepsy surgery friends has helped me so much over the last 6 months. My little boy had surgery 6 weeks ago and like any mummy when we were told initially he had to have brain surgery I was petrified. I had the pleasure of meeting Anthony and a few others who had had the surgery and I can honestly say I don’t no how I would of got through it without the support of the group. There was no one better than to talk to other people and other mums who had gone through the same procedure. 6 weeks on and my little man is doing amazing. Thank you so much Anthony for starting this group, you are truely an amazing person xxLaura Squire
I would like to say that being in this group from the onset of its life and to see it continue to grow has been a rewarding experience. By trying to guide people to their goal and put them at ease with knowledge and experience has been amazing. Following people’s story from the outcome of making one of the biggest decisions of their life and seeing them give their experiences during their process is just second none and an honour to be an active member. This is one big happy family and friendships (too many to list but you know who you are) willing to hopefully help people improve people’s quality of life and long may it continue. I must end with a big thank you to Anthony for his inspiration and enthusiasm of making this group what it has become.
Epilepsy Surgery Friends has helped me so much! My husband Rob was waiting on a date for surgery when I joined this group. Rob is now a few weeks post left temporal lobe surgery and the group has been invaluable throughout our surgery journey. The ability to ask questions about anything from understanding complex medical info to the mundane has meant the world to both of us. Meeting people who understand and friends who have been so supportive at a scary time was wonderful. We even met one of the members at Rob’s hospital! Thank you Anthony for starting this group and giving all of us an opportunity to share our concerns and celebrate our successes together.Clare
I would think to thank Anthony I had my surgery 11 years ago it didn’t work but I found this group and it’s amazing they are always there for you and everyone is going through the same thing every day it’s great to talk to epilepsy surgery and friends they are more like family now to me I have made alot of friends they are so amazing people when I talk to them they can understand what I am going through Anthony is a amazing person and Debbie always gives me positive energy and Simon and Zoe they are All great in the group and I feel so comfortable talking to them thankyou again XXXLetitia Tinney
I would like to say a massive thank you to the Epilepsy Surgery Friends group on Facebook it has been amazing where I have been able to get advice from a lot of people, I am still awaiting my surgery at the moment, the people on the group, the guidance they give is our of this world.Kelly Johnson
Hi Anthony, I was at a seize control event through epilepsy action and someone mentioned this group to me which is so useful discussing topics which myself and others relate to and knowing you aren’t the only one. Thanks Anthony for creating and everyone else’s participation.Sean Leonard
I would like to say a huge thank you to this group! It’s over 6 months ago I had my surgery now and without a doubt I can certainly say having people to talk to who understand what you are going through has made me avoid one big downwards emotional spiral! I had about an 85% chance of developing depression after my surgery and I’m pretty sure if it wasn’t for you lovely people I would be on anti-depressants by now! You’ve seen and guided me through some very scary times since the surgery. Special thanks to Anthony and Debbie for helping me that scary night a few months back and telling me to go to A&E and Anthony also for writing all the updates for me as you were all so (kindly) concerned about me! We really are like a little family who are always here for each other and I thank god I found you!!!Zoe
Anthony, creating this group was an amazing, thoughtful thing to do. Having had surgery, finding this group has been a huge ‘Positivity ‘ for me . I love the balance of support and supporting each other ☺. Our days out together is also a lovely thing to do. And we are all proud to wear our group T shirts that we’ve made. I love the reactions from people when I have it on . Anthony, as I always say to you when I see you…. hold your head up and stay proud xxDebbie Bromley-Derry
It started at the age of 7 months, blind in one eye, brain damaged and partially disabled down my right side. All my life I had to be with someone due to my seizures.
However then in 2013 I had the opportunity to have surgery under the care of Dr. M. Prevett based in Southampton General Hospital.
I had 2 brain operations which lasted 16 and half hours. The first one included putting 3 metal plates in before my right hippocampus was removed from my brain a week later.
It has been 6 years now since my operations and I’ve been seizure free ever since which has changed my life so much.
The hardest part for me was getting through the recovery as I was suffering from anxiety.
It was also hard to get used to the changes in my life such as being able to go out on my own independently, not expecting to damage myself whilst seizing and doing things by myself again.
I'm still on medication but happy to say I've had the all clear from my specialist to start to decrease them which feels amazing.
Some of the things I’ve done since having surgery Is I’ve been up in a helicopter, been to concerts and done the Weldmar Midnight Walk twice which I’ll be doing again later this year!
During my recovery I also had invaluable support from this group where I started to talk to people like Anthony Williams and others who have been through the surgery. It really helped me because I felt at last I’ve found some really nice friends I had so much in common with. This was a blessing as I no longer had friendships with my old friends anymore.
Last year I held an event for the group outside one of my local café's called Tea On The Green which is run by my second cousin Jenny James. We held a stall outside with a coffee & cake morning where we happily raised £116.00 overall. Jen has also kindly let me sell keyrings, earring sets, mugs, pens and other bits to raise awareness of the group.
I’m also hoping to run another event when the warmer weather arrives as both myself and Jen who runs the cafe feel really proud to support the group especially as any funds raised on the gofundme site all goes towards improving services for epilepsy.
We chose the £116 we rose to go towards epilepsy services at this Charity.
Allie wishes to thank Dr. Page and Michelle Knight at this hospital for their support and being there when I need them.
When I was ten years old I was at a friend’s sleepover, when in the middle of the night had a severe convulsion which resulted in me being admitted to hospital to be stabilised.
After further tests I was diagnosed with epilepsy. I was prescribed a low dose of anticonvulsants and remained well until the start of my GCSE’s. Due to exam pressures and the stress surrounding that, I began to have more seizures.
My medication was increased gradually to try to control them, but I started to experience lots of side effects, which were very difficult to live with.
I tried lots of different medication, but it never managed to fully control my condition. As a result my neurologist at the Royal Hallamshire Hospital discussed the possibility of me being a candidate for neurosurgery.
The first procedure as an inpatient for surgery would involve using ROSA. After a lot of thought and talking this through with my parents and lots of medical staff I decided to agree to the procedure – a decision which has changed my life.
The monitoring from the electrodes determined that 100 per cent of my seizures started on the left side of my brain, then travelled to other areas of my brain, like a firework. This meant I was a candidate for surgery.
In November 2017 I had the extensive neurosurgery at the Royal Hallamshire Hospital. Since then I’ve only one seizure which was post-operative and very common during the healing process. I am now six months seizure free.
I can’t thank the Neurocare team and all the hospital staff enough for all the support I have had and for the excellent care I experienced at all times. I have also had a lot of support from various epilepsy support groups, which has been invaluable.
Volunteering at the golf day is my way of giving something back. Without Neurocare and supporters like IFM Insurance my life would be very different. Thanks to them I am hopeful that I can have a future that is seizure free and hopefully so can many more people like me.
Supporters of Neurocare raised £250,000 to bring the ROSA surgical robot to Sheffield, which IFM Insurance contributed to through the sponsorship of the charity’s annual golf day event.
The Royal Hallamshire Hospital is the only NHS hospital in the UK to have ROSA. Without this commitment by IFM and all the supporters patients would not have access to this life changing facility.
ROSA provides neurosurgeons with extraordinarily accurate 3D maps of the brain, allowing them to precisely and safely reach areas they could not reach before. Its pinpoint precision is far less invasive and has the potential to reduce surgery times by as much as 40 per cent, greatly improving recovery and surgical outcomes.
This offers real hope to those with poorly controlled Epilepsy, deep-seated brain tumours, Parkinson’s Disease and other complex brain disorders.
For more information about Neurocare, or to donate, click below or call 01142 269678.
This article was written in June 2018.
When I was about 6 years old, I was given a diagnosis of epilepsy. I began having seizures, where my body would shake rapidly and violently, whilst I had no conscious awareness that this was going on. I had seizures mostly during sleep. My form of epilepsy wasn’t photosensitive. Over the next couple of years after my diagnosis, my seizures progressively got worse in intensity as well as more frequent. When my epilepsy was at its worst, I typically had an average of 2 or 3 seizures at night and 1 or 2 during the day. The experience of having one isn’t something I’d wish on anyone. During the day, I’d usually have a weird vision then collapse into a seizure. At night, I’d mostly wake up ‘half consciously’ after having a seizure, with my parents by my side trying to support me. Sometimes during the day, I also used to have what I called ‘half seizures’ where I felt like I was going into a seizure but didn’t completely and still remained somewhat conscious. But overall, at the time, I didn’t really have a clear understanding of what was actually happening to me
My behaviour at the time was generally quite aggressive, usually in a physical and impulsive way. I didn’t really have much self-control over my own violent behaviour. There was a general pattern in my behaviour as well, where I’d typically have a seizure at night if I’d been violent at some point during the preceding day.
After countless visits to Birmingham Children’s Hospital, involving many MRI scans and other tests, it was discovered that a small section of the hippocampus in my brain hadn’t fused/wired correctly with the rest of my brain at birth (basically, this section had died and had become a blockage in my brain.) This was deemed to be the cause of my seizures.
The decision was made that I was going to have brain surgery to remove this small section of my hippocampus. I went into surgery on the morning of May 27th 2009, 10 years ago today! The doctors predicted the surgery to last for 3/4 hours. On the day, the procedure took about 7 hours but it was a completely successful surgery. The last epileptic seizure I ever had was the night before this surgery, now over 10 years ago. My violent behaviour also seemed to disappear completely after my surgery. The main side effect was that my short term memory processing has been slightly impaired, although this has slowly improved over time. I also have a scar on the left side of my head from the surgery, in the shape of a question mark (below is what it looked like a short time after I’d come out of the surgery).
10 years on, I have bea diagnosis of epilepsy. I began having seizures, where my body would shake rapidly and violently, whilst I had no conscen able to lead a life I wouldn’t have come anywhere close to if I was still epileptic. I have been able to decide on the pathways I’ve wanted to take, including being able to study at University, something that would’ve been out of my hands before. I can enjoy the life that I lead.
I am so thankful to so many people for persevering through what was an incredibly difficult process. I want to give a massive thank you to all of the following people. Firstly, to my close family for being brave and continuing to help me fight through the process. Secondly, to everyone at my school at the time who also helped me during the process as well as ensuring my education wasn’t severely affected. And finally, to every single person at the Hospital who worked with me or was involved in the surgery, including Mr Walsh who had the main involvement in my surgery. None of what I’ve been able to do since then would’ve been anywhere near possible without their hard work and dedication. Everyone at the NHS deserves so much more than what they’re currently getting.
Thank you to everyone. I understand that there are many other people with epilepsy who are currently going through a lot more than I ever did. I stick by all of those people and would tell them all if I could to keep fighting every day. Having epilepsy is incredibly tough. Keep fighting, every single one of you.
And that’s my edition of the 10 Year Challenge!
Hey Anthony, I need to thank you for all the support you give by creating and running the support group on Facebook called “Epilepsy Friends Surgery”. The closeness by people with epilepsy, family, friends and caregivers of people with epilepsy brings everybody together like a tight knit family. And to top it off, your support group focuses on support of all aspects of the different surgeries for people with epilepsy. Your experience of having surgery, lets you and others pass on their support to, people looking into surgery. Thank you so much for taking the time to give the support you do to people throughout the world including me from across the pond!
Mya won the community volunteer of the year award where she is student at the university of Worcester.
The bake sale Mya held, and combined with other group members in the area helped to raise funds for epilepsy service at Birmingham children's hospital charity on behalf of the group.