Lois’s Story

Ex nurse Lois, from Wales, knew she hadn’t had a stroke when she woke up with what she suspected was Bell’s palsy on 21st January 2018.

Lois before Bell's palsy

Lois before Bell’s palsy

My husband had a really bad chest infection and we happened to be going to A&E with him anyway because it was a Sunday.  We went into A&E and a doctor looked at me and said: “Oh, you’ve got Bell’s palsy!” I’d had an earache a couple of days prior to it that didn’t come to anything, but then woke up with Bell’s palsy that day.

At the hospital they prescribed me steroids and some eye gel and they told me to tape my eye shut and take the steroids and go to my GP. My GP didn’t seem terribly well informed about it and said: “Time will tell”. I wasn’t very happy with that response, especially as I felt quite ill. I felt achy and quite poorly and had a lot of pain in the left ear and left side of my face. I did a lot of reading on the internet like you do and I stayed off work for two weeks feeling acutely unwell. I work in Tesco in the cash office so I’m not really facing the public. I felt really self-conscious, so I don’t think I would have gone back if I was in a public facing role. I couldn’t chew very well, or suck or drink from a normal cup and had to use straws. I did my own little blog on Facebook to raise awareness.

Lois January 2018

Lois January 2018

My face got worse before it got better because if I look at pictures from day one I just looked miserable, but a few days on it started to look like my face was drooping. By March or April time I started to smile a bit better. I just wasn’t very happy with what the GP was telling me as I was in a lot of pain and he was very reluctant to give me painkillers although he did eventually.

I went to the opticians who put some drops in my eyes and reassured me that the surface of my eye was fine. I didn’t get referred to anyone. I went back to the GP to ask who I needed to see. He said the waiting list is three to four months so I said I would be happy to go private. I felt like I really needed to speak to somebody, to just tell me where I was at, and if I needed any other therapies. In England there are clinics where you can get physiotherapy etc. but when I asked to see a specialist he said he would write a referral but I would need to find a specialist! I didn’t have a clue so I asked him if I needed to see a plastic surgeon, or ENT? He advised ENT, so I looked up but couldn’t find one that specialised in facial palsy, so I went along to one at my local hospital. The ENT consultant did examine all round my neck to try and rule out tumours or anything like that, but apart from that he couldn’t reassure me. I told him about my crocodile tears and he said it was nothing to do with the Bell’s palsy, which didn’t really reassure me. He said he would see me again in three months and if there was no improvement in that time he would do an MRI. Yet when I went back to see him again, he said: “No, you’re going in the right direction there’s nothing more I can do for you, I’m discharging you.”

August 2018

August 2018

That’s when I asked Facial Palsy UK where my most local specialist was and they told me about a plastic surgeon in South Wales. It was like a weight being lifted as he obviously does specialise in facial palsy and it was really nice to know I wasn’t going completely mad and everything I was going through was completely normal for what I’ve got. He also said to me that my face had recovered too well for any surgery but that he could offer me Botox therapy which would help with the muscle spasm and the pain that I’m getting in my cheek. I don’t think I’ll get any better than this. Where it is now is where it’s been for three or four months. Last summer my face looked virtually normal and a lot of people say they can’t see it now, but I can see it. The worst thing is that my left eye closes when I smile and chew, it’s what bothers me most of all, and my smile is not what it was. But I do appreciate that I have had a good recovery compared to some people.

My self-esteem has definitely been affected. I’m not as confident as I was, I get embarrassed by the way I look. Also, eating out – I feel like I’m not chewing properly, and I cover my mouth. My eye runs when I eat and my nose runs constantly too.

I have historically suffered from depression and did have a big dip with that when it first happened and then again quite recently, just before Christmas. But its peaks and troughs – my family try and say I don’t look any different, but I do look different.

Lois Dec 2018

Lois Dec 2018

I go out less, feel less confident, even though you’re the same person you don’t want to make eye contact with people.

I think there should be more access to specialist treatment and to experts, so you can be reassured that you’re being given the right treatment and advice. Professionals should be able to point you in the right direction like Facial Palsy UK did. I wouldn’t have gone to a plastic surgeon if I hadn’t spoken to Facial Palsy UK and I’m now booked in for the Botox therapy. Also, my surgeon is being realistic and says he’s not sure if it will help, but it’s worth a try.  My feelings are that the more of us that take it up on the NHS the better. He said he’s not sure how long the funding will last, but if there’s more people on the waiting list then hopefully the funding will keep coming. I’m lucky it’s in this area.

Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.

Last reviewed: 28-02-2019    ||    Next review due: 28-02-2022