Dani’s seizures first started when she was 18 and just leaving college.
“All my seizures were focal, brought on my stress, anxiety and tiredness. For six months I had no idea what was going on and what these ‘moments’ were…but they became more frequent at the start of university. I was just told to drink less and sleep more but I knew that would have no effect. I remembered nothing about each seizure, my friends would tell me what had happened. My memory of hours either side of each seizure was very poor.”
An MRI scan discovered a benign brain tumour in Dani’s right hippocampus, also affecting the amygdala
“When I was first diagnosed and they found the tumour, I freaked out. This took a while to sink in. Surgery was offered at first but then I was told to try medication. But after two years of unsuccessful treatment, the seizures were controlling my life and surgery was my only option at tackling them really. After I’d tried a third medication, I said, ‘I’m done with meds, please can I have surgery now? I need my independence back.’”
Five months ago, in November 2014, Dani had brain surgery at Southampton General Hospital
“The neurological team at the hospital have been brilliant throughout my journey, giving me lots of advice beforehand and support afterwards.”
Recovery, however, was slow, which Dani felt her expectations could have been better managed. “I would say that the aftercare, in terms of the averages and leaflets I was given, was quite misleading. I had lots of complications and it took me ages to recover. They say four to five days is the average stay in hospital. I stayed for 15 days and was then back in there almost immediately after I was discharged, for another 24 hours. Five months later, I’m still building up stamina. They said 3-4 months recovery but that doesn’t cover everything. I still have a way to go. I still get mentally fatigued but my energy levels overall are sometimes better than they were before the operation, due to how tiring the seizures were.”
Despite a tricky recovery, Dani says the surgery has had a huge effect on her focal seizures
“I haven’t had a seizure since! I still get auras but they say they will fade. In February they started again and every time I panicked that I was going to have a seizure. But they are less frequent now and I don’t even tell anyone when I have them. I would really worry about being in public alone, and would have to decide whether to warn someone that a seizure was coming. Now being in a shop or getting on a bus is fine.”
As well as being seizure-free, Dani’s memory has hugely improved and she is reclaiming her independence
“My memory is so much better, it’s so refreshing! I’m remembering things that even friends don’t and they are amazed. When I was first out of hospital I couldn’t read a book without a ruler, now I’m fine. I do worry about crowds, as I’m missing a quarter of my vision, so I’ll bash into things on my left. My mobility is still building up, my neuro-physiotherapist says it’s superficial weakness. I’m trying to do lots of different things to get it moving in different ways, for example, swimming and ice skating. I borrowed a friend’s guitar to help strengthen my left hand and fingers. It took me at least a week to walk again and that wasn’t very accurate. I struggled to walk properly until January - it was more of a cautious shuffle and I would hold on to someone, and now I’m going to the gym! My independence has grown massively. I’ve been able to get the bus, go to the gym alone, and the local shop, it’s awesome.”
Dani’s confidence has also returned and she is looking forward to getting back to university
“I’ve deferred a year of my psychology degree, so I have my final year to take in September. In a way, the timing is good and I’ve been quite lucky. I had an amazing few years at university, and now I’m not having seizures and I can knuckle down to the hard work next year.”
“Just go with your gut instinct, if something doesn’t feel right. And if a treatment is suggested that seems scary, instead of just putting it off, ask for more detail. The more you talk about it and get all the information, it reduces the fear and you’ll be better equipped to make a decision.
“When I was diagnosed, brain surgery seemed like the worst, scariest thing in the world, but it’s changed my life around, hopefully forever. It was a difficult process and for six weeks afterwards I wished I hadn't gone through with the operation and was very depressed. Only in March did I realise how worth it everything was, or would be in the long run! I’m happier than I’ve been in so long and I’d recommend the surgery to others in that position. It’s amazing what they can do! So many people know someone with epilepsy and I hope many more people have success as I have so far.”
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Supported by Cyberonics through an educational grant. Cyberonics developed and markets Vagus Nerve Stimulation (VNS) therapy system. Cyberonics has no editorial control on the content.