By Alyce Collins
LONDONER diagnosed with a brain tumour at EIGHTEEN underwent BRAIN SURGERY that caused a STROKE and left her with facial paralysis – despite originally being told the tumour was ‘nothing to worry about.’
Finance officer, Samantha Taylor (25) who is originally from Bromsgrove, UK, but moved to London in 2017, experienced her first dizzy spell when she was 14, but it was considered a one off despite it happening again a year later.
Unfortunately, by the time Samantha was 18, dizziness was a monthly occurrence which would often wake her up in the early hours. The regular frequency of dizziness became concerning so Samantha had an MRI which revealed a mass in her brain measuring 18mm.
Samantha was told it was nothing to be concerned about and that it was likely just found by coincidence. Following this, Samantha had MRI scans every six months between 2013 and 2014, and then annually until 2016, and then she was supposed to have one final scan in October 2018 before being discharged.
By 2018, Samantha would wake up in the night to a head rush, spinning walls and she had nystagmus, the involuntary movement of her eyes. In December, Samantha was told that the tumour in her brain had grown to 22mm, much to her surprise because she believed that as she was due to be discharged, the chances of the tumour growing must have been minimal.
Samantha was told that her dizziness was due to vertigo, but now she insists that it was caused by the growing tumour in her brain. The mass was successfully removed in June 2019, but doctors think that a possible stroke during surgery left her with facial paralysis and a weaker right side.
A biopsy confirmed that the mass was a pilocytic astrocytoma which would have continued to grow had it gone unnoticed. While doing physiotherapy to recover movement in her face and strength in her right side, Samantha started her Instagram page, @beautybrainuk to raise awareness so other patients can avoid being discharged when their health is still at risk.
“I first had a dizzy spell when I was 14, and then again at 15. These were considered one offs, but when I was 18, they started happening monthly until my surgery,” said Samantha.
“They would only last a few seconds but would always be in the early hours and wake me up.
“When I was 18, I was diagnosed with a brain tumour after a head MRI discovered it. I was told not to worry about it as it was most likely found by chance.
“I would wake in the night to a head rush, spinning walls and nystagmus in my eyes. I was monitored for five years with MRI scans every six months in 2013 to 2014, then annually until 2016. I was due to be discharged in October 2018, but that final scan showed that the tumour had grown to 22mm.
“I was shocked because although I had been told I might need surgery one day if it ever grew, I was due to be discharged and therefore thought that for the doctors to consider doing that then the chances of it growing were really slim. I really wasn’t expecting the news at all.
“My dizziness had been worsening but I was told there was no relation [to the tumour growth], I didn’t for a second think that the tumour growing might be the reason. I requested my hospital notes from over the years and I noticed that during those two years from 2016 to 2018 I had been complaining that my dizziness was more frequent in that time.
“I was diagnosed with vertigo in summer 2019. As I was still experiencing dizziness, I was being tested for it whilst waiting for my surgery. To be honest, I knew it was growing by that point and had brain surgery scheduled so I was less focused on the vertigo diagnosis.
“I fully believed by then that that it most likely had been the tumour causing the dizzy attacks over the years and only the surgery would really help the constant dizziness.”
It’s thought that during the surgery, part of Samantha’s brain didn’t get enough blood supply and caused a cerebellum stroke, and she’s due to have a scan in December 2019 to confirm this.
“I was really apprehensive about the risks of surgery and whether I would be the same afterwards, but I really liked my surgeon, and had full confidence in him which made a huge difference. Once removed, the tumour was tested and came back as a low grade pilocytic astrocytoma,” she said.
“I had surgery in June 2019, where they think I may have suffered a cerebellum stroke as part of my brain didn’t get any blood supply during surgery, and that does explain why my right side is much weaker.
“After my surgery I had permanent nystagmus and couldn’t see at all for a few days. This is much better now as it only happens when I look left and right and I have been given glasses with a prism to help with the double vision as I currently see two of everything.
“Due to my facial paralysis, I couldn’t eat properly, use a straw or blow out a candle until recently. The more movement I get in my cheek, the easier it is to do these things.
“I had a lot of physio in the weeks following my operation and part of that was simply putting a key in the door and carrying a cup of tea a short distance with my right arm as I couldn’t do these things at first.
“I physically couldn’t use an escalator until a few weeks ago. They were so fast; it was a brain overload. I had a physio session dedicated to mastering one and went up and down one until I was confident. I think living in London, not being able to use one was such a hindrance as it meant I wasn’t able to get anywhere as every tube station has one.”
Samantha also spoke about sharing her journey on Instagram and being inspired to create bracelets to help others.
“Whilst preparing for surgery, I planned to do a little blog to share recovery updates. I also had my favourite mantra made onto a bracelet: ‘something good is about to happen’, to remind me that better days are on the way and give me that support I needed,” she said.
“I decided that I could distribute and give back to Brainstrust while providing daily reminders to others. Just planning to do that, and working on my blog, kept me positive and forward thinking to a time when it would all be over, so I didn’t think about brain surgery as much.
“I want people to be aware of my story and to push not to be discharged even if they’re told they have a slow growing tumour that hasn’t changed yet. This could be lifesaving. I was very lucky mine grew in that last scan, but if it didn’t it would have grown to a point that made me very poorly and would have been much riskier to remove.
“I hope that the messages on my bracelets remind others that we are all dealt different cards in our life and we have no control over some. But what we do have control over is the way we choose to respond to these things. I hope the bracelets enable others to avoid considering difficult times as problems, instead seeing them as opportunities.”
To see more, visit www.instagram.com/beautybrainuk