Sue’s story
Sue experienced worrying symptoms for a number of years before the cause was diagnosed. Following surgery in 2020, she is continuing to recover but still feels the lasting physical and emotional impact of all she has been through.
Sue tells her story
Approximately ten years ago, I noticed that I had started to lose my hearing in my right ear.
My ear sometimes felt full, and I went to the doctor thinking it was a wax problem. The doctor told me my ear was clear, but my eardrum was badly scarred and asked if I’d had a lot of infections as a child – I hadn’t. The only thing the doctor could suggest was a hearing test for a hearing aid, and I didn’t think it was that serious if it was a scarred eardrum or if they’d be able to do much about it.
At around the same time, I started to get pains in my neck, so the doctor sent me for physio, who told me it was my posture! I had also been experiencing pins and needles in both my hands and feet, sometimes to the extent that a hand or foot would go to sleep. One particular day, it wasn’t until I stood up to walk and my left foot didn’t come with me that I realised I had a problem. My foot went underneath me, causing a loud snapping noise. A bone had broken.
Referral and tests, but no explanation
It took some time to get referred to see a neurologist consultant at Wolverhampton Hospital. I was sent for an MRI, and it was discovered I had irritation of the nerve end in my neck, causing me to hold my head awkwardly, almost like a permanently stiff neck!
I continued to have tests over a long period and was referred to the QE hospital in Birmingham to see a more specialised consultant. I had nerve conduction studies, blood tests, and a lumbar puncture. I was even diagnosed with possible Charcot-Marie-Tooth disease (CMT). But several years passed, and no definitive answer was found.
Continuing symptoms
By the end of 2018 and into 2019 these were some of the symptoms and problems I was experiencing:
- Being clumsy and dropping things
- Tripping up over nothing, especially on stairs, when I didn’t always lift my foot high enough
- Getting forgetful and having to write things down
- Neck and shoulder pain, going down to my arm, and sometimes down my back to my left hip
- Headaches with the feeling of pressure like my head was in a vice
- Difficulty sleeping, when I wake up I feel like I have a hangover
- Falling over several times, and even walking into doorposts!
- Sharp pains as though being stabbed with a needle in toes, legs, fingers, bottom of feet
- I felt like something is crawling over my skin and face
- Woke up from pain in the left side of my face, and could not move my jaw
- Woke up with swollen sore eye
Finally, a diagnosis, but no support
My hearing had also deteriorated, and I had a hearing test at my optician’s, who referred me to an NHS hearing centre. From there I was sent for an MRI, and in April 201,9 I was told I had a brain tumour.
The bottom fell out of my world.
I was told it was an acoustic neuroma, and they were usually benign. I was referred to ENT at QE Hospital, Birmingham and was told I was on ‘watch and wait’. I was amazed, I had been told I had a brain tumour and then was literally dismissed to go home and just wait! I wasn’t offered any support. I had something possibly growing in my head on or near my brain, and it had to be evicted; it shouldn’t be there!
Second opinion and surgery
I asked for a second opinion at Salford Royal. I’d looked online to see where the nearest hospital specialises in acoustic neuroma tumours, and I’d read up about them and even watched a YouTube video on the surgery. My unwanted lodger had to be evicted! I was impressed by the consultant and the care he showed with regard to my feelings, and he made sure I understood the consequences.
I had surgery on Monday, 10 February 2020, and I was determined I would be in and out as quickly as possible. I had Gentamicin injections to help reduce dizzy spells after surgery, and I was up and walking as soon as I was allowed. I left the hospital at lunchtime on Thursday, 13 February.
The operation left me with a slightly wonky face. My tumour had been removed 100% but had to be teased off my facial nerve, so I have needed some facial rehabilitation.
Sue had surgery in February 2020.
Importance of support
I first contacted Brain Tumour Support after I had been diagnosed. I spoke to the support line and was amazed by the concern and support shown. The lady who had never met me before spoke to me for well over an hour; she made me feel as though I was important to be listened to. I was invited to attend a West Midlands meeting regardless of the fact I lived in Staffordshire. My husband and I attended a meeting in Wolverhampton (this was before Covid-19), and we were welcomed and made to feel comfortable. It was eye-opening to see how many types of tumours there were, everyone’s experience was different.
Sharing experiences is important as until you’ve been there you cannot understand or appreciate what having a brain tumour is like. How it impacts both your body and your feelings.
I will always be grateful for the hand of support Brain Tumour Support offered without looking for any form of payment.
Sue’s fundraising through art
Grateful for receiving support herself, Sue is now aiming to raise some funds for Brain Tumour Support.
At the end of 2018, when she was suffering badly from symptoms before her diagnosis, Sue was encouraged by her long-time friend Michele to try art as a way to relax and reduce stress. Sue had never considered herself to be at all artistic, but with Michele’s encouragement, drawing has now become a passion. So much so that Sue has joined up with Michele and another friend, Fortune, to form FMS Original Art and set up their own website.
Sue says “I want to help raise funds through my passion for art. My friends and I are only amateurs but would love to reach out and offer a little something back for people’s donations. My friends would like to join me in this venture and would donate a minimum of 20% of their sales. I donate 100% of my sales. Please take a look at our website.”