Portrait: Tara

In February 2022, I developed a sudden onset double vision. I've always worn glasses and put this down to not having had an eye test since before the COVID-19 pandemic...

Tara’s first symptoms 

I wasn't entirely convinced by the first optician, who suggested two different types of glasses. A second optician suggested a "fairly urgent" MRI. I have an MRI annually due to a genetic condition and coincidently had one about two days later.  

The MRI showed a minor bleed from a cavernoma in the pons nerve (which influences eyesight). I had also developed a numbness in my left arm. The neurologist didn't seem overly concerned and said it should all heal within a couple of weeks.  

A holiday interrupted 

We had a family trip planned to Disneyland Paris for the May bank holiday. Other family members had norovirus a few days before, but all got better quickly. When I got sick in Paris, I thought it was karma for being smug that I had not been ill when they had.  

After two days of lying on the hotel bathroom floor, unable to walk and violently sick for two days, I went back to the UK and went straight to my neurologist. The last thing I remember is asking for anti-sickness pills in A&E in May.  

It turned out my cavernoma from February had a second, far more severe bleed into the brain stem. The medical team hoped that it would stop on its own. Unfortunately, it didn't, and they had to operate.  

Surgery (times two) 

The surgery went successfully, but I then developed hydrocephalus. They inserted a drain, but it didn't work, and I had a second surgery to insert a VP shunt. These procedures were all done by the fantastic team at the National Hospital for Neurology and Neurosurgery in London.  

The only memories I have between May and August (when I left the hospital) are some bizarre and scary hallucinations in the ICU and a couple of extremely patchy memories on the neurosurgery ward before I moved to the Wellington Hospital in London for rehabilitation. I was unable to walk, talk, or swallow and only had partial vision.  

Rehabilitation made a difference 

My rehabilitation consisted of physiotherapy, speech therapy, occupational therapy, and neurological music therapy. The therapists were all incredible and have made an enormous difference. I have also made significant progress this year since being home.  

I still have some side effects that haven't 100% gone away. My loss of independence, partial loss of vision, and restricted mobility have affected me the most.   

Since being home, I have incorporated some of my hobbies into rehabilitation. Tie-dye and playing my Nintendo Switch have helped from an occupational therapy perspective. They have greatly improved my grip and finger mobility in my weaker left hand. My other hobby, pilates, has helped with my walking ability, core strength, and balance.  

Improvements, aided by family 

My family has been an incredible support system. They were very encouraging during rehab and visited me in the ICU (when I was too ill to know). My husband has been fantastic. He adapted our house to make it accessible before I got home and is a constant source of emotional support.  

My most considerable success is that I can walk around the house unaided and control my balance when standing on a level surface outside. My eyesight has probably improved as much as it will. I have tried Botox to correct the pupil position, but it hasn't worked. I now have an occlusion lens for the right eye in my glasses. It essentially corrects my vision as much as possible.  

What I want you to know 

I am naturally self-critical, but the past year has dented my self-confidence. If I had to give any advice to somebody, it would be to set realistic goals for your recovery.  

Take time when doing things that might no longer come naturally. It's better to wait longer and achieve something safely, rather than rushing it and potentially injuring yourself.  

If you have been inspired by Tara’s story, we encourage you to join our growing community of supporters and spread the word about brain injuries by sharing this story. Together, we can make a difference and create better brain injury recovery services. 

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