A sensitive time in my life

So I got the first blog post out of the way.  I hope it explained a little bit about me, the Meningitis, the recovery, and what I plan to do next.

However, from reading someone else’s blog, I have decided to go slightly off topic.  Since my teenage years, I have had problems with both of my ears, in particular, the left ear, which has resulted in 8 operations on the left, and one (with another one scheduled) on the right.  Prior to each of these operations, from the first one in November 1986 to the most recent one in September 2015, I had always been told that Meningitis was a post-operative risk.  I had been told of other risks, both during surgery and post-op.  One of those risks was developing something called Facial Nerve Palsy.

Facial Nerve Palsy is basically, facial muscle weakness and paralysis of one, or both sides of the face.  This has many causes, but with that kind of surgery that I had, there is a risk of the facial nerve being cut, or damaged as a result of infection.

Between April 2002 and October 2007, I had to be admitted to the E.N.T.unit at the hospital with a severe infection of the left ear on 7 occasions. The infection on each of those occasions was Acute Mastoiditis of the left ear.  I had an underlying condition called Cholesteatoma, which was causing these infections, but as I found out, it can be notoriously difficult to diagnose  There are many explanations as to what a Cholesteatoma is.  To try and keep it simple, it is skin inside the ear growing the wrong way round. Normal human skin sheds it’s dead skin cells, but with a Cholesteatoma, the skin is growing the wrong way round, so the dead skin cells have nowhere to go, so they just build up and build up and become compressed.  If undiscovered, and/or left untreated, they can cause all kinds of damage inside the affected ear or ears, and can, in some cases, cause major and/or life threatening complications..  Cholesteatoma can only be removed by invasive surgery under a general anaesthetic, which of course, carries risks.  There is no other option to surgery.

In what turned out to be my 2nd last bout of Mastoiditis in October 2007, I asked my then surgeon if it was possible that the Cholesteatoma had come back?  He dismissed the suggestion, the infection was treated, and I was sent home after a few days on intravenous antibiotics.

Less than a year later, I woke up one Sunday morning, nothing strange, no pain, just felt like it was going to be a normal sort of Sunday for me.  I had a white t-shirt on, and I grabbed and drank from a bottle of Coca Cola. I spilt half of it around me, and I thought it strange.  I took another sip, and the same thing happened.  Looked in the mirror, and tried to smile.  Half of my face was working, and the other wasn’t.  Although it had yet to be diagnosed, I knew that I had Facial Nerve Palsy.

I went to my doctor the next day, and my blood pressure was raised, so I was referred immediately to hospital.  I went to the A&E (Accident & Emergency) unit.  At the hospital, the raised blood pressure and drooping face immediately caused concern.  I was put into resus and closely monitored.  Put on oxygen for about the first 30 minutes, on to a heart monitor, and an ECG trace taken.  Blood gases were taken, raise your arms, raise your legs, wiggle your fingers, wiggle your toes, and that special favourite, follow the finger! They also tapped my left arm and leg in various places, asking me if I could feel that, which I could.  They didn’t say anything, but I knew because of the blood pressure and facial droop that they were checking me for stroke.

At that time, I did have hypertension (high blood pressure), but I foolishly believed that there was nothing wrong with me, and had up to that point, refused treatment for it.  Not for much longer though.

Despite the face droop and the high BP, there were no other indicators of stroke.  The emergency doctor said that he noticed I had an infection in the ear canal, but by this time, it was coming up to midnight, and he wanted me to see my ENT consultant surgeon the following morning.  He said he felt that because of my ear history, and an apparent infection, along with what he was calling, “Bells Palsy”, he believed it to be connected. I knew that before he said it!  But of course, other things, like stroke obviously had to be ruled out first.  So, with all tests complete, and doctor reassured I hadn’t had a stroke, I was sent home to come back in the morning.

I seen the ENT consultant the next morning, where I was immediately admitted. Surgeon straight away said “Facial Palsy” which is the same thing as Facial Nerve Palsy, just worded differently.  I was sent for a CT scan on the Thursday, and operated on that following Monday afternoon to remove the Cholesteatoma, infection, and try to keep any further damage to the facial nerve to a minimum.  After the surgery, I would say that my facial muscle weakness got worse before it started to get better. It was about 5 or 6 months after the op before I noticed any kind of improvement.

As a patient, as I understand it, Bells Palsy is often a generic term used for facial muscle weakness.  It is also used when the facial nerve becomes inflamed due to a virus, usually the Herpes Simplex Virus (HSV).  The effects are usually temporary, and normally last between a few days to a few weeks, with a complete recovery.

In my case however, it was Facial Nerve Palsy.  So what caused it?  The Cholesteatoma and associated infection had eroded the boney structure, called a sheath (no, not that kind of sheath 😉 ) around the facial nerve, and strangled the facial nerve itself until it exploded.  Medically, this is called, Explosive Decompression of the No7 Cranial Nerve.  Like I said, there was no pain, and I wasn’t aware of it until I drunk from that bottle of Coke.

Using the Brackmann scale, my facial nerve paralysis was classed at Stage 5 paralysis with a 3rd degree facial nerve injury. 

Stage 6 Facial Nerve Paralysis is total, permanent paralysis of one or both sides of the face, so stage 5 was severe dysfunction of the facial motor nerve.

3rd Degree facial nerve injury meant that it suffered permanent damage with incomplete repair. 

The facial muscle movement did improve slowly, although it is now classed at about a stage 2, which is classed as slight dysfunction of the facial motor nerve.  This also means that there is still facial muscle weakness, and that this is about as good as it will get.

The photograph above shows my Facial Nerve Palsy perhaps at around it’s worst.  This photo was taken at my nephews house in Inverness, Scotland on 31 December 2008.  You can see the right side (my left) of my face is drooping considerably, and at that point, I could not close my left eye, so I had to close my eye, and wear a patch overnight to prevent it from drying out and becoming painful.  As I say, the damage did heal, but not completely.

The above photo was taken of me in June 2008, working on board the HSS Stena Voyager, ,a few months before the Facial Nerve Palsy struck.

 

The photo above was taken in Inverness in August 2015. This shows that there has been improvement, but it is not 100%, and sadly, it never will be.

When the Facial Nerve Palsy was at it’s worst, between September 2008 and February 2009, I was very reluctant to go out, even to go to the local supermarket, as I was afraid of what people would think.  I became highly sensitive to it. I had visions of people staring, pointing fingers etc.  At that time, it affected my confidence greatly. But I worried unnecessarily. because even at it’s worst, people didn’t really notice it unless they had a trained eye or unless I pointed it out to them.  Gradually, I forgot about it.

But I have not talked about this for a few years, not because I was scared to, but simply, my life has moved on from then, and never really gave it a second thought.

Like with the meningitis, the support I got from my sisters and their families helped get me through.  And although I am not the most religious of people, I do believe god was by my side during both of these illnesses.

But it was a lady in New York who inspired me to write about this. She talked about her own struggles with something entirely different, and put a very brave photograph up.  And that is my inspiration for this post.  Caralyn, (I’m not sure if I have spelt your name correctly), again, I want to say, “Thank you” 🙂