So for Facial Palsy Awareness week (March 1-7) I thought I would write a full post about the last 4 yrs and 5 months as a Facial Palsy sufferer. This post is a little different to the press release posted on Facial Palsy UK as it talks about my experiences in more detail and prior to the onset of palsy. It is a lot more personal, and I write about my whole diagnosis of Otosclerosis which is indirectly what lead to my Palsy.
I wanted to do a YouTube Video but I have been ill and just have not had time to record it. Maybe next year I will do a video with an update from now till then. So here goes, get comfy with a cup of tea, a glass of wine or a glass of water, because this is certainly not a short blog post.
How it all started…
At the age of 25 (2005) I started to continuously hear banging in my left ear, which I thought was a little odd and took myself off to see a doctor. He said I had an ear infection and sent me home with antibiotics. After the course of antibiotics finished I still had the banging in my ear, and after numerous visits to my doctor over the space of about a year I was finally referred to an ENT specialist. I remember one doctor saying ‘it’s normal, we all hear banging in our ears sometimes…’ The issue was this was not sometimes it was all the time and was starting to interfere with my quality of life and my hearing.
After seeing the first set of ENT consultants I was told they couldn’t see anything in the scans and all that they saw was something a little different with one of the bones in the ear on that side of the face. But they stressed that was probably just genetic and nothing to do with my hearing loss and banging in my ear. This was very frustrating news. This is also around the time I really started to notice the difference in my hearing, it was deteriorating, but they said I was not going deaf… and it was not sensory hearing loss (like that people usually get in old age)…so what was the issue??
I remember being quite emotional as I sat with the consultant and trainee doctors at the hospital. I told him that I would not accept the fact there was nothing they could do and this was not normal and it was affecting my life so I insisted they do more. I was then referred to another consultant who had a lot of experience in this field.
The Diagnosis before Palsy
So I had started to see someone who specialised in ear and lower neck surgery, and after years of trying to find out what was wrong with me and after having an invasive procedure to check the arteries and blood vessels in my brain (angiogram) I was finally diagnosed with Otosclerosis in 2009. After 4 years of back and forth and my hearing deteriorating so badly that I could not hear someone if they were talking to me face to face I was relieved. But what did this mean, was I going to go deaf??? The answer was yes eventually I would unless I had an operation, a hearing aid could not fix this (well not then, there is new technology now). So it was a no brainer for me, go deaf or have an operation to try to fix my hearing. And at this point my left ear was worse than my right. So they decided the left ear was the best to operate.
I waited until I couldn’t wait any longer for the operation, and in Dec 2010 took the plunge knowing all the associated risks such as going fully deaf and facial nerve damage. I still remember signing the form that tells you about the known risks and their likelihood, facial nerve damage was one of the rarest risks…and I never thought I would be one of those people who one of those very rare things would happen to, but I was.
Immediately after the operation
I remember waking up after the operation and being told it had gone well, I remember seeing the face of my very good friend at the time, and I wasn’t expecting her to be there so it was nice to have someone there when I was brought out of theatre. She knew my mum and boyfriend would be late and wanted to make sure I had someone there. Which was lovely of her.
The consultants had told me that it would take a few hrs for the anaesthetic to wear off on the left side of my face and it was a bit like the anaesthetic you get when you go to the dentist, but more of it :). At this point I wasn’t worried.
Hours after the operation
As my operation had been one of the last of the day I was kept in overnight. And as you can imagine I did not sleep. After a few hours of laying there and after everyone had left, I got up to go to the bathroom and to look in the mirror because my face still felt the same as it did a few hours before. I knew at that point something was wrong.
As I walked into the bathroom I will never forget what I saw when I looked back at myself in the mirror, the left side of my face was dropping down I knew something was wrong, I cried my first of many tears at this point. I called one of the nurses and she said it sometimes takes people a bit longer for it to wear off, but I knew something was wrong.
Through the night of no sleep I got up probably 5-6 times to check my face and still nothing..I couldn’t move it not at all. I was afraid, and now not really thinking about my ear at all. Had I been one of those unlucky people whose facial nerve had been damaged due to the op? was I suffering from a reaction to the anaesthetic?, was I suffering a virus? Having done quite a bit of research before the operation I knew most people recovered from this type of palsy within 3 months. So even though I was upset I thought that was how it would be for me.
The Morning After the operation and the onset of Palsy
The next morning my consultant came to see me and told me it was likely my nerve had been damaged and was extremely apologetic about it all, which just made me angry. But thought after a course of steroids I would get better so not to worry, also I had the whole ear thing going on, and would find out over the coming weeks and months if it had been successful in giving me back my hearing in my left ear. All this time the hearing in my right ear was also deteriorating, slowly but surely.
I remember crying and crying and crying and not being able to stop. At the time my boyfriend (Riya and Aanya’s Dad) was dealing with a lot due to the fact he was caring for his terminally ill father, who had been given months to live. It was a unbelievably stressful time. And it caused me to feel totally crap about complaining about anything or talking to him about how I was truly feeling, after all I wasn’t dying like his father was. What no one knew at that point was that I was slowly dying on the inside. After having suffered years of health problems I just had enough, this had broken me and I didn’t know where to turn or what to do.
Weeks and Months on from the onset of Palsy
I think I had the packing removed from my ear a week after the operation and when I returned my consultants were surprised that my face had not recovered at all. However they did give me hope that it wasn’t complete paralysis and gave me some rating for how bad my paralysis was, not quite fully paralysed but not far off. But on the up side I could hear a bit better and as weeks went on my hearing got better and my left ear was now pretty much back to normal which was fantastic.
I remember asking my consultant at my follow-up appointments why there was nothing more that could be done for my face, was there no rehab? was there nothing at all? Obviously me being me researched everything I could on the internet finding all sorts of info out and finding out quickly that there was not much research into facial palsy and it’s cures or remedies…..
And all the info was quite disjointed and I just had to listen to what my consultant said about just waiting for it to heal.
Christmas that year was horrible I just remember crying and crying and crying and I holding my niece in my arms and wishing I was her age again. And as the time passed I got more and more angry. Angry at god, Angry at my family, Angry at my boyfriend just angry overall.
Returning to work after about 2 months off was probably the best thing I could have done, although extremely hard at first knowing everyone knew and everyone could see I looked different. It was a little annoying to see people’s looks of sympathy it made me more angry, and this whole time I never showed how I was truly feeling to anyone at work, but I sure let it out when I got home…
I was very lucky to have a very supportive company to work for, who I still work for now, they gave me the support and time I needed and I was also able to use their counselling services to help me through some of the hard times.
During the pregnancy with the girls
After 3 months of the onset of Palsy I found out I was pregnant, and this just happened to coincided with the passing of my boyfriends father and as you can imagine what would normally have been considered a happy time was somewhat different.
The only people who knew about my pregnancy were my mum and my boyfriend. I kept it quiet as I’ve always believed to keep it quiet till the first trimester is over, but little did I know I was in for another roller coaster ride.
I was badly sick from 5 weeks into the pregnancy until 5 months of my pregnancy, and was diagnosed with Hyper Gravidarum (severe vomiting). As well as being heavily sick, which I’m sure did not help my recovery of Palsy, I had to visit hospital every 2 weeks. I had been told I was having twins who shared a placenta and being regarded as a high risk pregnancy I was constantly in and out of hospital.
The stress really was too much for me…Facial Palsy, going deaf in my right ear, Pregnant with Twins, Sick and being told its high risk!! I found myself withdrawing from the world. I didn’t want to do anything, see anyone. I just wanted my smile back and to feel normal again.
Finally a referral
During the whole time I was still seeing my ENT consultants and it’s funny because I wonder if I would have been referred as quickly to a specialist in this area if I hadn’t pushed and insisted there must be something that could be done. What no rehab? I remember asking my consultant again. And the answer I got back was ‘there is nothing to prove anything other than waiting for the nerve to heal will help’ I was so disheartened, I couldn’t believe that this was it. I continued to go back to the ENT specialists and was seen by one of the other surgeons who had done my ear operation. I saw this as a chance to try and ask for rehab or something of that sort as it was not my regular consultant. To my relief he agreed to refer me to someone who was a specialist in the field. I was so relieved. Did this mean I could get help? By this time I had started to notice tone coming back into my face and slight movement.
Finally some therapy
By the time I actually got my appointment with the team of consultants and therapists for my Palsy it was a few weeks before the girls arrived (they arrived early, 2 months, which is not unusual for twins).
I still remember my Initial appointment. I was so emotional and heavily pregnant by this time I remember crying and apologising to the nurse for being so emotional. I had tests to check my nerve function. It wasn’t great, and I already knew that. Some areas had seemed to recover better than others.
I left my appointment feeling low as I was told that it was highly unlikely I would ever regain full use of that side of the face again and smile like I used to. Something I already knew after doing my research but something which had now been confirmed. The nerve had healed in a different way to how it was initially wired and so it’s connections were not as efficient as before leading to Synkinesis. And so the facial rehab journey began, one which I’m still on now.
After The girls were Born
Once the girls were born I started to see some changes in my face, things seemed to be improving a lot quicker than before 🙂 and being a busy mum of twins I started to regain a little of my lost confidence as I was plunged into something new.
Having twins certainly had and has its stresses, but I really think having them helped me get over the dwelling in self-pity stage of having facial palsy. I was devastated when I lost my smile but my babies had given me a whole lot more to smile and live for.
I truly believe having a focus can really help at times of despair and depression. And oh how I was depressed, and it didn’t get better for a while after having the girls because I was so hormonal. I was lucky to have supportive family and friends around me to help. I do remember just crying lots, but I knew that was down to my hormones more than the fact I was still crying for my lost smile.
After I had stopped breast-feeding I was allowed to start relaxation therapy having already started doing facial loosening exercises from my first appointment I was feeling a lot better about it all. When I had my first Botox appointment I wasn’t sure what to expect. I was a little scared about getting injections in my face, I also didn’t really want many people to know I was getting Botox. What would they think?
But this was the point at which things really started to change, the Botox helped relax my muscles on my affected side, which had seized up after not being used for so long. And at first it was only my affected side that I had treated with Botox. Alongside this I spent ages looking in the mirror and trying to retrain my face to do what I wanted it to. I remember telling my brain ‘Do not raise your eye brow when you smile’, ‘just relax’, ‘drop that lip on the good side’, ahhhh the hours I spent trying to analyse the workings of my face was incredible.
I was determined to get some smile back and I really wanted to focus on doing the right things.
I decided at the next Botox appointment to get my good side slightly treated to try to even the face and to also give the weaker side a chance to come back, as the right hand side had become overly dominant.
After 8 appointments of ‘Relaxation Therapy’ (Botox) I am still seeing changes, however I’m not always happy with the effects of the Botox. I’ve had times where the good side has been slightly over treated for my liking and so I end up looking like I am grimacing rather than smiling, but hey it wears off so I’m not so worried. I can say every single time I have the treatment it helps me regain more movement in the affected side. I still hope that I will continue to improve, the Synkineis has not gone away and as more movement comes back I notice the affected side feeling tighter, despite doing the relaxation exercises.
I still get very dry eye and have to regularly use lubricating drops, I have involuntary movements that I didn’t have before, my left eye constantly twitches, and I mean constantly. I still shed a tear sometimes when I see picture of myself before the Palsy, not because I am sad, but because it reminds me of the long, hard journey I have been on to get where I am today. But I’m getting better, and I am determined to keep getting better.
And so my journey continues, it’s certainly not been an easy one, and the whole time I have worked full-time (apart from Maternity leave and time off due to being signed off work) and also taken up the hobby of nail art, which is what most of you know me for. Nail Art was and still is an amazing way for me to de-stress and it helped me a lot during the earlier stages of Palsy and having the girls. Having a creative outlet helped me to get a little bit of me back. And If you haven’t seen the amazing support from the nail art community on this one go check out the #FaceMyDay on Instagram.
And finally I just want to say thank you to everyone who has supported me through my journey so far, friends, family, work colleagues, ENT consultants, nurses and not forgetting the amazing nail art community.
So now I ask you all to get involved in the last few days of Facial Palsy Awareness week, and go paint half your faces with make up, face paint, shave half your beards off, paint your nails purple, donate to help fund research or do anything you can think of to help raise awareness for this widely misunderstood condition. Most people go years before getting the right treatment for this condition, and there are no nationally funded trials to prove what helps and what doesn’t. Please click on the link below to give whatever you can to help this cause, which is one very close to my heart.
Thank you for taking the time to read this.