Patricia’s story

How it started

It was a Friday afternoon before a long weekend. I was running through traffic to catch the train home while on a stressful work phone call. I started to feel a headache. This headache continued through the evening. It got worse in the night and I felt a sharp searing pain through my left eardrum which I had never experienced before in my life. The headache was gone in the morning, but I felt particularly haggard. When I looked in the mirror, my left eye was a bit droopy. By the time I looked again after lunch, I thought something was not right – now half of my face drooped a little. I knewI did not have a stroke because I could move my arms fine, but I decided to goto the local after hours emergency clinic. As I waited for my turn, I felt the left side of my face droop more and more until I could no longer see out my left eye.

Symptoms

I was diagnosed by the doctor at the emergency clinic with Bell’s Palsy and was prescribed prednisone for several days. I was told that I would recover by myself in a couple of weeks and that I should check in with my GP if I didn’t get better. I had never heard of Bell’s Palsy and wa sincredulous that I had lost control of one side of my face. Over the next day,I discovered that I had trouble seeing and judging distance with one eye and soI walked into doors and furniture often; I couldn’t drive; I lost my sense of taste on one side of my mouth; my mouth was dry and I constantly bit myself on the cheek or on the tongue and developed lots of blisters; I could only use the good side of my mouth to chew food; I could not drink liquids or eat soup without making a mess; my left eye was dry and sore because the eyelid was neither closed nor open; and when I showered, I felt like I was washing m eyeball with hot water.

I took a week off work, and started working from home full-time after that because I didn’t feel I could safely commute. My work involved a lot of talking and meeting with people. All the meetings were moved online and I did all of them with the camera off. My speech was slurred and there were many words I could not pronounce, including my name. Phone calls became difficult because I developed extremely sensitively hearing in my left ear and couldn’t tolerate even moderate sound. I answered all calls on speakerphone far away from my left ear.

After a couple of weeks, the left side of my face became cold to the touch and the muscles were sore. I saw my GP due to the lack of progress, but was again told that I would get better by myself. I started to get quite worried and depressed. After noticing funny looks from strangers and scared children in public, I stopped going out of the house. I stopped including myself in photos on family occasions or hid my face behind the family dogs instead.

Finding help and slow recovery

I was finally referred to a neurologist by my GP after four months. The neurologist confirmed the diagnosis and suggested I might findsome physiotherapy helpful even though I should recover by myself. The lack of information and health practitioners knowledgeable about this condition in NewZealand was frustrating to me. I saw a physiotherapist who specialised in the head and neck after five months of suffering from Bell’s Palsy. At that point,my face had not regained any movement at all.

The physiotherapist started dry needling therapy and massage on my face. Parts of my face started to move slightly in the first two weeks. I was over the moon. I was given exercises for facial expressions to practise at home. Having a physiotherapist who spoke of other patients withBell’s Palsy also made me feel less isolated. Though my face was starting to move again and I began trying to eat with the affected side, many muscles had become very stiff and sore by this point. I developed new problems with crocodile tears and synkinesis, particularly with movements of the mouth linked to movements of the eyes.

Progress started to slow down after about three months of weekly physio sessions. I felt deflated again and began thinking that I would have to come to terms with my face, my sensitive hearing and restricted peripheral vision on one side. My physiotherapist suggested that I should investigateBotox treatment for Bell’s Palsy to relieve some symptoms.

Finding a plastic surgeon with experience with facial palsies was not easy, but Botox injections were a much-needed relief with the tense and painful muscles. My face became much more symmetrical a few days after the injections and gave me a little confidence boost. Seeing a plastic surgeon also made me aware of some surgical treatments that could be available once everything else had been explored.

10 months after first being diagnosed with Bell’s Palsy,my employer was no longer supportive of my road to recovery. I made the decision that getting better was more important than a very stressful job. When the level of stress came down, my muscle tension decreased as well. The muscle pain, even when the Botox gradually wore out after several months, reduced dramatically. My hearing became less sensitive slowly. I had surgery on my eyelids to improve vision for my left eye. I have started to drive again.

I now have physio sessions online after a second round ofBotox injections, and have started new facial exercises which are really helping me make improvements to facial symmetry and reduce synkinesis. The opportunity to discuss my issues with a specialist physiotherapist helps me with pinpointing muscles I should work on and provides moral support. One year and 4 months after initial diagnosis, family and friends are commenting that I have made more progress. I am hopeful that I will recover more and get close to a face not defined by Bell’s Palsy.