After nine years, as her symptoms got worse and worse, she decided she had nothing left to lose – and now she is walking again after braving the operation to remove the 4cm tumour.
Gill, from Queensbury, Bradford, first went to Leeds General Infirmary with some numbness in her hands, in 2015.
“I had a scan and they discovered this meningioma in the back of my neck, in a very awkward place,” she says. “I went to see the consultant and he told me about the operation and the dangers. There was a risk that the surgery could cause permanent paralysis. It’s a very scary operation because of where it was, so close to my brain stem and spinal cord.
“At the time, because I was so well, and it wasn’t affecting my life, I chose not to have the operation.”
Deb Pal, Consultant Neurosurgeon & Spinal Surgeon at Leeds Teaching Hospitals, said: “This was a very large tumour which was fully calcified, which means it was hard, like bone. The worry was that operating on the tumour could damage the spinal cord, so she was too scared to have surgery.
“We mentioned to her that if you don’t have surgery, it will gradually get worse, but she said: ‘I’ll take my chances.’”
Gill’s symptoms did get worse over the years, and she started having to use a walking stick. “I was thinking seriously about having the operation and then the pandemic hit,” she said. “Soon after that I started to go a lot more downhill and by the beginning of last year I was really starting to struggle.
“I could barely stand let alone walk. I was having to use a hospital bed and a hoist to get in and out. I couldn’t feed myself. I decided then that no matter the risks I had nothing to lose. I thought if I got any movement back at all I’d be happy.”
Gill finally decided to have the operation in summer 2024 and the effects were amazing.
“Immediately after the operation I could lift my arms more than I’d been able to for months, so that was fantastic,” she said.
Gill talking before and after her operation
“Obviously I’ve lost use of my legs at the moment, I have virtually no upper arm
movement and when I spoke to Mr Pal he did say that obviously it’ll go, everything will go if I don’t have it. If I have the surgery and it’s successful hopefully I will keep whatever movement I’ve still got in my arms and slight possibility of some improvement but I don’t know if there’s much hope for that or not, I don’t think anybody really knows until after it happens.
“Quality of life – I don’t really have one, I’m just sat at home in the living room. Adaptions at home, I have a hospital bed and a hoist and my husband looks after me full time. Obviously I don’t get out at all, the only times I’ve been out this year have been these hospital visits you know, the only people I see is when someone visits, so yeah it’s not, I wouldn’t call it a quality of life, no.
“I’m feeling terrified about the operation, um everything really what could go
wrong.
“I am feeling much more positive, I was told at the start of the operation
that I had very little movement when they put the the monitors on me and from them taking the actual tumour out I could immediately move my hands better my legs better, and they do feel that hopefully I will get movement back so I do feel better.
“I know it’s going to be a very long haul. I’m glad I went through with it, I wish I’d done it earlier but in hindsight you know you don’t know what to do with things like that but but yes I’m I’m glad I did it. I don’t regret not doing it immediately because I was still very fit and healthy and if it had have gone wrong I would have lost so much but maybe four or five years ago, round about the time of the pandemic I was going to have it done and then the world ended so that stopped the idea. Because I was in a wheelchair by then, I was using a stick and sort of straight after the pandemic I thought about it for a bit and then I got scared again.
“My legs got worse and worse and then earlier this year when Mr Pal said to me you know your hands are going as well, you really need it and I said well I’ve not more to lose now, so. But yes I do wish I would have gone for it maybe a couple of years earlier than I had maybe not not years and years but certainly three or four years definitely. Obviously as you saw last week that’s as high as I could go with my hand and now I can touch my head, and this hand was practically dead and I can touch my head with that and I opened a packet of crisps yesterday, which to me was a miracle.”
After seven weeks in hospital Gill was able to return home and is still making progress in her recovery.
“It was a few weeks before I could stand,” she said. “I came out of hospital in the middle of September and I could walk a few steps.
“Since then I’ve progressed quite well. I can walk around the room with a Zimmer frame. I can get upstairs. I’m improving very slowly but the main thing is I can walk again. I can’t thank the surgeon enough. He did a brilliant job.”
The spinal surgery unit at Leeds Teaching Hospitals has an international reputation as a centre of excellence, with more than 1,500 elective procedures, more than 500 emergency operations and more than 12,000 clinical appointments each year. This case was rare, as the tumour was so close to the brain stem and spinal cord.
Mr Pal said: “It was the patient’s choice all the way along – consent is so important. There is never a right answer. These are very rare cases so it was difficult to predict how the surgery would go.
“We were prepared for it to be difficult, but we managed to remove the tumour relatively easily. It was a very uneventful surgery, done jointly with my consultant colleague Mr Priyank Sinha.
“It was life-changing for her. She can do things on her own now, six months down the line, she is still improving.”
Gill wishes she had had the operation earlier – but says it was such a tough decision to weigh up the risks. “I shouldn’t have waited as long as I did, but it was a very difficult decision to make because of the risks of permanent paralysis,” she said. “It was a balancing act all the way along.”