Lynne’s Story

Lynne (63) has really struggled with losing her smile, her best “asset” since she was struck down with Bell’s palsy in May 2013.

Before Bell's palsy

Before Bell’s palsy

During the week leading up to May 11th, it was warm at work and the air conditioning was freezing. It was blowing right across my face and I even brought a shawl in to protect my face. This went on for about three days and then I started to feel a bit unwell. It was really strange because it was my hearing more than anything. It was a most surreal feeling because I’d be sitting at home and it was as if there was a radio directly behind my head but actually the radio was at the other side of the room. That was Wednesday, Thursday I didn’t feel very well, Friday I felt really unwell and went to the doctors where they said I had a throat and ear infection and gave me antibiotics. Saturday morning, I got up and showered and washed my hair and I’m sitting there looking at my face in the mirror and thinking, my face doesn’t look quite right. My husband was out and when he got in, I said to him I think there’s something wrong with my face. He took one look at me and panicked and said we need to get you to A&E.

Bell's palsy struck

Bell’s palsy struck

In the meantime, I was ringing 111 and they said it was probably Bell’s palsy but I needed to get it checked out. When I got to A&E they got the stroke team to check me out straight away but said it definitely wasn’t a stroke, it’s Bell’s palsy don’t worry, in three weeks you’ll be absolutely fine!

I was put onto a ward temporarily and they gave me steroids and antivirals which was good. By which point then my face had got worse. They gave me food and I realised I couldn’t eat it properly and I couldn’t drink properly, but they didn’t give me any advice. They didn’t say what was going to happen or explain what it was. They gave me an appointment at ENT in a week’s time and that week was horrendous because I didn’t know what was happening to me and it had affected my hearing really badly. I’d lost my hearing in that ear completely and so my balance was just awful. I had terrible vertigo, I couldn’t get out of bed, I felt sick, I felt ill as well, and I just couldn’t stand up. I couldn’t bear loud noises and I couldn’t bear the television being on downstairs, I had to be away from it all. By the time I actually went to the ENT appointment I remember just going in there and crying because I didn’t know what was happening to me. They reassured me and said in a couple of months you’ll be back to normal and sent me away. I had an MRI scan and that was ok, but after that, that was really it, they didn’t want to know.

Living with Bell's palsy

Living with Bell’s palsy

The hardest thing was the psychological effect – what your face looks like and the fact that I couldn’t hear. I was referred to have a hearing test and they said I’d lost my base hearing and made further appointments regarding the hearing, but they didn’t want to see me any more regarding the Bell’s palsy. So, in the end I went to my GP and said I’ve got private healthcare and I need help and need to be referred back again. I was so disillusioned with the NHS treatment that I asked for a second opinion. So, I went back to the same department but was told that because I’d had such a severe case it was possible that it was Ramsey Hunt syndrome, although I didn’t get the other symptoms. Normally in Bell’s palsy you don’t get the problem with the ear and I still haven’t got my hearing back now.

I worked for Nat West Bank as a Customer Advisor on the telephone so I couldn’t do my job, I was off work for 20 months which was also just awful. I became a recluse, I’d cancel appointments to see friends and I’m quite an outgoing person, so for me to be doing that was just not me at all.

So, from May to September I’d only seen ENT through the NHS. During that time, I was just distraught, nothing was getting better and, in some ways, it was getting worse. There was one point when a deep line appeared in my face. I mentioned it at my October appointment, and they didn’t know what it was. They just dismissed it, but it was the start of synkinesis.

I’d been advised somewhere along the line that I should have an enhanced MRI because that goes into more details with the nerve endings. I hadn’t had that and when I told my local hospital that I should have one they just dismissed it and said no that’s not necessary. So, I had the enhanced one with private health care and it showed the nerves were growing back. At that point, they said the only treatment they would offer me was electro stimulation treatment, but I’d read that wasn’t a good idea so that panicked me a bit. I was referred to a private physiotherapist by Benenden Hospital after I went there for a second opinion in September 2013. On my first appointment with him, he was really great and knew what I was there for and he’d read up all about Bell’s palsy, so when I told him about my concerns about having that, he totally agreed, and he wouldn’t do it. So, from that point he did massages. The local hospital also put me down for physio, but they hadn’t dealt with anyone with Bell’s palsy before and sometimes I felt it was doing more harm than good because the NHS physio didn’t really know what he was supposed to be doing.

After first Botox

After first Botox

In desperation I was googling everything, and it came up with a specialist facial therapist based in Sussex. I emailed her and she said to me that they had a facial palsy clinic that would be able to help me and all I had to do was get a referral from my GP. So, I did that and I had to wait three months to be seen, but, it was just the most amazing thing. I went in February 2014 for the first time and saw a plastic surgeon who was the team lead. I can’t tell you, the relief, someone actually knew what I was going through and at that point I started having regular facial therapy and was taught how to manage the problems with my face. I had that for six months and after that I also started Botox treatment with the therapist. From that day in February I started to get the correct help, advice and treatment – 9 months after my diagnosis!

I still miss my smile, I’d probably say that my smile was my ‘thing’, my asset and it’s been taken away from me. I am lucky in that my face has straightened, and my septum (the cartilage that divides the nostrils) is straight.

My eye is smaller though and closes when I’m eating. I have to drink with a straw still and I’m so self-conscious especially when someone at work says: “We need to take a photo.” I find I have to think about how to position my face for the photo.

Lynne now

Lynne now

I did have some surgery where I had my under-eyelid tightened and I’ve had the other eye stitched so it’s smaller and my eyes match. It still waters a bit, but they couldn’t do any other surgery on it because it would make it look so odd.

For the two years I had off work I suffered with anxiety and depression, I was on medication for both, and when I went back to work, although it was hard at first, it gave me that positivity and I managed to wean myself off the medication.

I think there should be knowledge of the condition out there – doctors, hospitals and even pharmacies. If someone walked into a pharmacy for advice they need to know about Bell’s palsy and what needs to be done.

It needs to be out there more because hardly anyone knows about it – it’s only if someone like a celebrity gets it that it’s advertised. Although frustratingly the celebrities that get it seem to get over it really quickly.

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