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Image by Suvi Honkanen

My Story

Hi, I'm Tara. I live in Surrey in the UK with my husband, John, and our dog Rosie.  ​I have a rare genetic disease called Cowden syndrome. It means you're more highly prone to cancer, so I've had a lot of preventative surgeries. I have yearly check-ups with doctors to keep an eye on everything. Due to this, I'm more aware of my body, and it's why I knew something was wrong.


​In February 2022, at age 34, I was playing Mario Kart and suddenly had double vision. I wear glasses and put this down to not having had an eye test since before Covid. The first optician thought I needed two pairs of glasses, one for distance and one for reading. I wasn't entirely convinced by this, so I saw another optician who suggested I have an MRI. As part of the monitoring, I have an MRI every year and coincidentally had one booked for two days later, by which time I was also noticing a numb left arm. My neurologist is based in Oxford. The MRI showed a slight bleed in the pons (which influences eyesight), and he told me it would heal within a few weeks. He didn't seem concerned about my arm. I was given a prism for my glasses, and I went home thinking that everything would be ok. My vision did gradually improve. 

We were due to go on a family holiday to Disneyland Paris for the first May bank holiday. A few days before, everyone came down with norovirus but got better quickly. The morning we were due to travel, I felt horrendous; I was dizzy and extremely nauseous (following my double vision, which had begun to return the day before.) At the time, I thought this was karma for being smug that I didn't get norovirus like the others! After two and a half days of being very poorly in the hotel, I got the Eurostar back to London. Having given my neurologist advance notice that my symptoms from February were back and way worse than before, I went to see him the next day. I was admitted to hospital, and this is where my memory goes blank until the middle of August. I'm glad I don't have memories of ICU, but weird hallucinations from that time have unfortunately remained! 


I spent a month in intensive care in Oxford, where I lost the ability to swallow. I had a trach and nasal gastric tube inserted, both of which remained in place for six months and were eventually removed in rehab. I was transferred to The National Hospital for Neurology and Neurosurgery in London. I had surgery on a cavernoma, which had caused a massive bleed, filling the brainstem with blood, which resulted in a hemorrhagic stroke and disruption to all neurological functions. I spent another two months in intensive care and a further couple of weeks in a neurosurgery ward before eventually being transferred to rehab in mid-August.


In my case, the effects I have are that my pupils don't sit evenly, causing limited peripheral vision. I have restricted mobility and can generally walk on a familiar surface indoors without an aid and use a combination of my pole and my walker outside. When  I left rehab in December, I started doing community rehab. This is an ongoing process, and I'm adapting what I do as I progress.

For further updates, keep an eye on my blog!


If you have anything you'd like me to add to the site or products you think are worth trying, please get in touch!

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