It was a normal day for Sandra Johnston, aged 72 from Newtownards, when she was struck by an extremely rare form of stroke which has left her experiencing a permanent sensation of pins and needles.
Sandra says, “It happened on 19 July 2021. I was standing in my kitchen cooking, and I suddenly felt a funny tingling sensation in my left foot. It felt like I had tied a shoelace too tightly, but I was wearing flip-flops. It gradually started to move up my leg and then into my right foot. When I finished cooking, I got ready as my husband, Simon, and I were going out. Within the next couple of hours, the tingling had risen right up to my knees, and I knew something wasn't right.”
Sandra continues, “I rang my GP and they said they would ring me back in the afternoon. By about 2pm I hadn't heard anything and by that stage, the sensation was going up into my thighs and I knew there was something not right, but I didn't know what it was. At the time I actually said to myself, ‘Well, it's not a stroke.’”
Sandra decided to take matters into her own hands and attended A&E in the Royal Victoria Hospital. “I went up to the Royal because I thought if this is a neurological issue, that would be where the main neurological centre is so that would be the best place to be.”
“My husband was due to have surgery for his back on 6 August, so I said, you're not coming in here to catch COVID or something else, so I went in on my own.” Throughout her A&E wait, the feeling in Sandra’s legs was worsening. She says, “It kept coming up and up, right up into my thighs and buttocks eventually. Because it was warm, I was drinking quite a lot, so I was up and down to the loo and it got to the point where I was struggling to walk to the toilet. I was having to get over to the wall and hold onto the side rail, and then pull myself across to the toilet to grab the door.”
“It was coming up to around 8pm at this stage and I rang my elder daughter, Charlotte, and she came straight up. By 10pm she had to go and get a wheelchair because I couldn’t walk at all. I was in shock, so it didn’t really set in how scary the situation was. I was joking and laughing and asking, ‘what time are we going to get out of here?’ Charlotte said to me, ‘Mum. I’m pushing you around in a wheelchair, I don’t think you’re going anywhere.’”
“I was eventually seen by a doctor at 11pm after around eight hours of waiting, and from then everything moved very quickly. I had a brain scan and contrast MRI, which showed up absolutely nothing. I was relieved because I had begun to think maybe I had a tumour. I was seen by doctors from Neurology who felt it was nothing to do with my spine. Eventually I was officially diagnosed with Functional Neurological Disorder (FND) and spent ten days in the Royal followed by another ten days in Musgrave Park Hospital for rehab in the elderly unit, which annoyed me because I don’t feel a bit elderly! They got me walking again with the aid of a rollator.”
Sandra returned home, having to face adjusting to a new way of life. “When I got home, I found a neuro-physio in Holywood who would visit me at home (nphysioathome.com).who were very helpful and and got me walking again independently without my rollator. I would only need my rollator now on a very long day if I was out and about.”
Sandra says, “The physio felt that it might be worth going to see a consultant at the Ulster Independent Clinic who specialised in FND, which I duly did. A further MRI revealed that I had suffered a spinal stroke, which had not shown up in the original MRI scans.”
Spinal Strokes account for just over 1% of all strokes worldwide.
Sandra continues, “I'm a nurse by profession but I had never, ever heard of a spinal stroke and most people I talked to had never heard of it. I was referred to Musgrave Spinal Rehab and they examined me but concluded that there wasn't a great deal they could do. Basically, I've been told that no physio, nor anything else, will change my symptoms.”
To this day, Sandra still lives with the effects of her stroke. “The tingling sensation actually went right up to my chest and it remains like that to this day. It’s the hardest thing to describe. Around my whole abdomen feels as though I'm wearing a belt all the time. It's not uncomfortable to the point where I'm unable to breathe or anything, but it's constantly there. My arms were also affected at the time, but my right arm is completely back to normal. My left arm and hand are still slightly affected by a tingly feeling in the palm of my hand and I’m a bit fiddly with my fingers sometimes. My legs and my buttocks tingle quite a lot. My feet and my ankles feel as though they’re in a clamp, and now that sensation is actually rising further up my legs to nearly up to my knee. I feel as though I can't feel my feet, but if you touch me, I can feel that. I haven't lost any sense of feeling at all, but there's just this constant strange sensation almost like a dead leg. It's so hard to describe.”
Sandra continues, “It’s obvious that I've had nerve damage that isn't repairing. It's been over two years now, and there's no change, so it seems unlikely it will repair. If anything, I feel the sensation is coming up a bit higher. I sometimes wonder is it just going to get worse and worse, am I going to end up not being able to walk again? It’s frustrating as I am still feeling well, but I'm restricted in what I can do. I get very tired. I can't overdo things. I have four very active grandsons whom I absolutely adore and I love being with them, going to watch them play sports and looking after them but I can't do that as much as I used to.”
Sandra and her husband Simon, who had a stroke eight years ago, both attended their local PREP (Post Rehab Exercise Programme) run by Northern Ireland Chest Heart and Stroke following their strokes.
Sandra says, “The exercises we did at PREP were good for me physically, and it was great to be able to chat to the physio. I also now attend fortnightly Wellness Sessions from NICHS. I’m the only person at the group who has had a spinal stroke, but I’ve found it very helpful psychologically just being with people who are in a similar situation, and I also I find the activities and speakers who are organised to come in and talk to us very useful.”
“It gives you a lift, to have a nice chat and a bit of laugh with people who understand if you're having a rotten day. Ursula who runs the group and her volunteers are just fantastic.”
Sandra’s husband, Simon, also found the PREP programme beneficial after suffering from TIAs (Transient Ischaemic Attacks, also known as mini-strokes) and a stroke. Sandra explains, “Simon had a fall and broke his elbow in June 2015, was infected with MRSA in hospital and was very ill for quite a while. He recovered from that but developed Atrial Fibrillation because of the infection, and then had a stroke. It was all very sudden and happened within the space of a few months – he had his fall in June and had the stroke in August.”
Sandra explains what happened: “He was vomiting and had loss of balance so we went up to A&E at the Ulster Hospital where the diagnosis was vertigo although by this stage the symptoms had passed. Two days later, his symptoms reappeared and this time they were much worse. I recognised some of the FAST symptoms and the likelihood that he was having a stroke and we called an ambulance. Again, they said it was vertigo, but I insisted he was taken to the Royal where it was confirmed he had had a stroke.”
“Attending the PREP programme made him very grateful, because there were a few people at his PREP that were dealing with much worse side effects of stroke. His main symptoms are weakness in his left side, and PREP actually helped him to see how lucky he'd actually been.”
Sandra concludes, “Northern Ireland Chest Heart and Stroke’s support has been brilliant overall. It gives you somewhere to go when you’ve had a rubbish day and you’re feeling low or struggling and introduces you to people who have also been through a traumatic medical illness.”
“I would recommend anyone affected by a stroke should definitely avail of their support.”
