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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!

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