My name is Katie and I am now 23 years old.
I was diagnosed with IIH (Idiopathic Intracranial Hypertension [increased CSF pressure in the brain]) in September 2007 aged 13 after a couple of months of agonising headaches, black-outs and loss of vision. Originally I was diagnosed with migraines but after more weeks of agony a routine opticians appointment was what spotted the symptoms. The optician spotted that I had papilledema (swelling of the optic nerve, commonly known to be a symptom of a brain tumour) and was immediately transferred to the Eye Infirmary who then sent me straight to Sunderland Royal Hospital. After hours of testing in A&E I finally had a CT scan which confirmed that I did not have a brain tumour. This was a relief but it left the doctors puzzled as to what was wrong with me. I was admitted to the childrens ward and the following day I had a lumbar puncture (which had to be one of the most painful experiences of my life as I only had local anaesthetic and it took them 3 attempts to get the needle in!) My CSF pressure reading was off the scale, my medical records state is was recorded at +41. It was really much higher than that but the instrument they used to measure the pressure only went up to 40. Finally I was diagnosed with IIH. I have since had my fair share of eye and hospital appointments, a further 3 lumbar punctures and in July 2008 I was fitted with a lumbar peritoneal shunt, an 84 cm tube that drained the CFS fluid from my spine into my abdomen. I had been extremely lucky with my LP shunt and had no revisions but my day to day life was still a constant battle though, I suffer from headaches every day and will always have loss of field vision.
In July 2011 I was diagnosed with a Chiari - When your hind brain is sucked into your spinal cavity! Because of this I had to have my LP shunt removed, that was in February 2012. Within two weeks I was back in hospital, in March 2012 I had ICP monitoring where they drilled a hole in my skull and put in a probe to measure the pressure. After 16 hours they took me back to theatre, removed it and put in a VP shunt which drains the CSF direct from my right ventricle into my abdomen via a catheter. tunnelled under the skin on my chest. All was fine for a few months when at a routine Opthalmology appointment it was noticed that my optic nerves were swollen again. I began Diamox SR to help reduce it whilst I waited to see my neuro-surgeon. In July 2013 I was back in hospital having the valve replaced as it was discovered it had become faulty. I was recovering fine when I noticed a swelling around the new valve, 4 weeks later I was back in theatre having yet another revision, this time to fit a new catheter to my valve as the peritoneal catheter had detached itself from the valve and migrated down into my abdomen. It now sits curled up in my abdomen. I have days when I can't get off the sofa but I never let it beat me. I also have autism which made my life difficult but getting a diagnosis has helped me and everyone else understand me so much better, as well as a form of epilepsy called petit mal which was discovered in 2011. In 2010 I got back into horseriding (my favourite thing in the world) after having to give it up because of my IIH, and then went onto complete an NVQ level two in horse care at Houghall College in Durham.I have not had another hospital admission since August 2013.
Luckily, I am very well at the minute which has inspired me to raise money once again for IIHUK to help people with my condition that suffer everyday and are debilitated by the disease. I have recently completed a course and am now a fully qualified teaching assistant! and will begin a Foundation Degree in Education and Care in September to further my career while I can. I never know what my future holds as my shunt could malfunction at any time meaning I would have to be rushed into hospital for surgery, I still suffer daily with fatigue, mental health difficulties and the occasional migraine; but I will never let it get the better of me!
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