Some People

who have benefited from being part of the group


Brave mum who has had three brain surgeries on a cartridge recycling mission to help battle epilepsy


Click the above photo to read Kelly Blakeley story in the Wigan Today.


For 38 years I suffered with Epilepsy

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.

Allie Day


Charlotte Loxley - her Story

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.
Charlotte LoxleyAfter 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.


Epilepsy Pilgrim Walk


click above for details of the walk.


My 10 Year Challenge

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!


Tom Jay


Thank you for all the support

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! 

Steve


Award to Mya

     Mya's award    

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.

 




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