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Brain Surgery and Studies

14th May 2008

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Surviving three years away from the comforts of home, juggling the mind numbing tasks of cleaning, food shopping, and laundry is a feat in itself, something most university students will testify to. But surviving all that with a rare illness is unthinkable to most. Rebecca Daniels started at the University of Lincoln three years ago studying Criminology and Psychology, literally months after having brain surgery.graduation hat

Rebecca Daniels "Just before Christmas the year before, I found a rash that didn't disappear under the tumbler test. The doctor diagnosed it as a fungal infection, but a week later I was having blurred vision, sensitivity to light and intense headaches that left me screaming in pain." At this point Rebecca was taken to hospital where she was diagnosed with Meningitis C. "I was told that if I wanted to survive this I had to fight for myself, because although the doctors could give me medication to alleviate the pain there was nothing that would cure me".

"After the symptoms didn't disappear after two weeks I was diagnosed with Benign Intracranial Hypertension." BIH as it is abbreviated, displays symptoms so similar to Meningitis that it was impossible to know when one started and the other ended. "It was literally like one day I woke up and I had gone from being told I had Meningitis to having this new, daunting illness."

BIH is the build up of high pressure within the fluid around the brain; it can be treated by medication or in more extreme cases surgery. The condition occurs in one in 100,000 people, and is usually caused by obesity, or from a hormonal imbalance caused by taking certain medications. Although Meningitis can cause this the chances of this occurring are even more remote. "When I was first diagnosed they tried to solve the problem with medication, and continued to up the strength of the drugs until it was clear it wasn't working. At this point they told me that surgery was my only option if I wanted to have any kind of normal life at all. At that point I was spending one to two weeks a month in hospital, and although the brain surgery wasn't guaranteed to work, for me it was the only option. I was determined to continue with my A-Levels and come to university."

"After investigatory surgery and a battery of tests I finally went in for surgery on July 4 2005. I was having a shunt fitted that would drain some of the fluid from my brain, thus relieving the pressure. I can't describe how I felt before surgery; I was so scared, especially after having to sign forms that stated I knew what could go wrong, and that I could be left with all kinds of disabilities afterwards. I woke up after the surgery in the Intensive Care Unit, while people asked me what seemed like stupid questions like 'What's your name?' 'Who is the prime minister?', while people shone lights in my eyes. It seemed especially insensitive since my condition means I am extremely sensitive to lights. Eventually I was moved back to a ward, and was finally allowed to leave on July 7. I had the surgery at Addenbrooke's Hospital in Cambridge, and because of the bombings in London they needed the beds, so I was discharged under the conditions that a district nurse would visit me everyday."

Two months later Rebecca was moving to Lincoln to start university.

"It was daunting because if I got ill again my parents were so far away. Also I was worried that people would think I was disabled or treat me differently because of my condition. But I had to tell at least one of my flatmates about it just in case. I was also worried because it's hard to explain what it feels like for me. The best way I can describe it is if you imagine your head feels as though it's been crushed by a vice, a headache unlike anything you've ever felt before, where every part of your head hurts and the pressure is unbearable, and it's a pain no-one can see. The world becomes soft focus, where things come in twos, and you can't tell how deep a step is, bright light is a pain you can't stand. Things sway around you, you feel seasick - yet you're standing still. You're so totally exhausted that your body doesn't want to move and all you want to do is sleep, yet an incessant roaring in your ears keeps you awake. It's strange because it is something you have absolutely no control over, in a way you know when your brain is malfunctioning, and you know you have absolutely no say in what it makes your body do. I don't think anyone who hasn't suffered from this can ever really understand."

"Everything was fine to begin with, being away from home took some getting used to, but we were all in the same situation. Depression is common among BIH sufferer's, as it is with anyone who suffers from a long term illness, but I think my determination to keep going helped me get past that. So I went out with my friends and continued to have a normal life. The only things that differed between me and my flatmates was that I generally had to and still have to do more work."

"Because of my condition I have problems with concentration and my short term memory, but this just means I have to repeatedly read things so that I learn them. Dealing with my concentration span is another problem, particularly in lectures, but I have learnt to just persevere and work through it"

It wasn't until the final weeks of the Christmas semester in Rebecca's second year that things began to go wrong. "I still get headaches even though I have the shunt in place; they just aren't quite as bad. But they seemed to be getting worse, lights were becoming increasingly bright again, and I had to hold on to things when I went up or down stairs because my spatial awareness was being affected. I was ill over Christmas again and had to go into hospital. Because of the severity of my headaches I had to see my professor because they were worried there was a problem with my shunt. I had been told that shunts can last between 10 and 25 years, so it wasn't something I had been prepared for. But unfortunately, something was wrong so I had to have surgery again just 18 months after my first one. The valve that drains the fluid had malfunctioned; it was still draining fluid but not nearly enough."

"My shunt was replaced and re-sited, it wasn't quite as scary as the first time because I knew what to expect, but it was just as painful. This time though, I was out of hospital and back at university within two weeks."

"I had to work extra hard to make up the work I missed while I recovered from surgery, and in the end had to apply for mitigating circumstances for one of my essays. Thankfully, I managed to pass with a 2:1 which I was pleased with. Now I'm in my final year, I still have to work just as hard. Some days I wonder if it's all worth the effort, and if choosing to come to university was the best decision. But then I remember the time I spent in hospital, and know I made the right decision. If I had not come to university I would not have met so many people who I now know will be friends for life. Hopefully all this effort will pay off, and I will get the first I am hoping for, and be able to go out into the world and help people. I know that at some point in the future I will have to have surgery again, but hopefully that is a long way off."

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