Is now a Meningitis survivor – twice!

Apologies that there has been no recent updates. As the title suggests, I have recently survived another bout of Bacterial Meningitis.

This bout was caused by a serious ear infection in the left ear, although both ears were infected. The left ear also has a Cochlear Implant installed. Because it was considered the source of the Meningitis, it will have to come out.

I have spent almost 2 weeks in hospital, and am expected to remain for another 2 to  3 weeks for continuing treatment, and possibly surgery.

I will write more soon.

Barry P

Some myths of Meningitis

Myth:

“You always get a rash with Meningitis.” Or, “There is no rash, it can’t be Meningitis.”

This is one of the biggest myths, and has sadly, been known to kill.

A rash does not always appear in cases of Meningitis.  If Meningitis is suspected, please DO NOT wait for a rash to appear, and seek immediate medical attention.

The fact is that the rash is actually a sign of blood poisoning (Septicaemia), and is often, though not always one of the last symptoms of meningitis to show (Meningococcal Septicaemia).  But symptoms of meningitis can show in any order.

I contracted Pneumococcal Meningitis in September 2015, and I did not have a rash.  From what I was told that in my case, Meningitis was suspected early on, and treatment was started soon after admission to hospital.  It is probably why I not only survived, but was able to make a full recovery.

From what I know, a rash is rare in cases of Pneumococcal Meningitis, but if does show in many of the other strains; in particular, Meningitis B.  But again, as I say, if you suspect meningitis, don’t wait for a rash.  It might not show, and even if it does, it could well be too late by then.

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Myth:

“Meningitis is only dangerous in young children and babies!”  A similar myth is that it “only affects babies and children under 5.”

Whilst it is correct that babies and children under the age of 5 are the group most at risk, the fact is that it can affect, and indeed, can kill anyone, at any age.  I was in my late forties when I contracted Meningitis, and I read stories on various meningitis websites of people older than me succumbing to the disease.  I was on the main ward and out of the Intensive Care Unit 2 or 3 days at that point when I read one story that particularly upset me.  Admittedly, it was not what I wanted to read whilst I was recovering.

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Myth:

“Viral Meningitis is a milder form of Bacterial Meningitis.”

The fact is that although Viral Meningitis rarely kills, it can still have the same debilitating effects as the Bacterial version during the early stages (stiff neck, dislike of bright lights, severe headache, vomiting, confusion, slow to respond, agitated etc.).  During those early stages, there is no way to tell whether a patient has a Viral or Bacterial strain of the disease without various tests being performed by doctors.  So if Meningitis is suspected at all, whether it turns out to be Viral or Bacterial, it must always be treated initially as a medical emergency.

Although most people do make a full recovery from Viral Meningitis, some people are left with a life changing disability, such as headaches, memory loss, anxiety, depression, hearing problems, sight problems, exhaustion to name but a few.  For some others, recovery can be a long, slow process.

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Myth:

“You wont get Meningitis if you have been vaccinated.”

That is partially correct.  While there are now an increasing number of vaccines available for various strains of Meningitis, they will only protect against the strain or strains that it has been designed for.  Sadly, you wont be protected against another strain that you have not been immunised for, or for where there is currently no vaccine available.  Despite the progress in recent years, there are still many strains of Meningitis that currently have no vaccine.  Some vaccines have only been recently introduced, and priority is currently being given to those groups considered most at risk from those strains.

The UK charity, Meningitis Now, have a list of what Meningitis Vaccines are currently available.

https://www.meningitisnow.org/meningitis-explained/what-meningitis/meningitis-vaccines/current-vaccines/

This is only a snapshot of the Meningitis myths. For me, the most important one is the one at the top.  Again, I repeat what I said earlier:

A rash does not always develop with Meningitis, so, if Meningitis is suspected, seek immediate medical attention.  Don’t wait for a rash to appear.  It could be too late by then.

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” 🙂

A Meningitis Survivor

Fire, Rock and Ice

Iceland’s Wilderness Challenge

For Meningitis Now

Thursday 27th July to Monday 31st July 2017

From Thursday 27th July to Monday 31st July 2017, I am intending to participate in a 3 day (5 days in total) trek in Iceland, called “Iceland’s Wilderness Challenge.”  This trek is to raise funds for the United Kingdom based Meningitis Charity, Meningitis Now.  Meningitis Now provides support for all of those affected by Meningitis, whether through disabilities caused by the disease, the psychological impact of having Meningitis, whether on the patient, on a loved one, or both.  The funding also provides support for those who sadly, have lost loved ones to Meningitis, through bereavement counselling, financial support or both.  The funds raised also go towards vital research into new treatments and vaccines.

 

This is my story:

 

On Tuesday 15th September 2015, I had minor corrective surgery on my left ear.  Prior to the surgery, it was explained to me about the risks during and after the surgery.  One of the post-operative risks mentioned was Meningitis.  Even though I knew it was a risk, and I signed the consent form acknowledging that risk, I never thought for one split second that it would happen to me.  But just 5 days after surgery, I was readmitted to hospital with Pneumococcal Meningitis, a form of Bacterial Meningitis.

 

The recovery from the initial surgery was strange to say the least.  For about 2 days after the op, I was high as a kite, and practically no pain at that stage.  By the Saturday, I had developed pain in the left ear, and a little bit of bleeding came from the ear canal, which is perfectly normal for that kind of surgery.

 

On Sunday, 20th September 2015, just 5 days after surgery, I woke up that morning, feeling very tired and sluggish.  I went and lay down, and I soon developed a headache, and shortly afterwards, started vomiting.  My sister asked if I was alright, to which I replied, “I’ve got a bit of a headache.  I’ll be alright though!”  But after I threw up again for a second time, and with the headache getting worse, I said to my sister, “I think you’d better call the doctor.  It’s only 5 days since I had that operation.”  By this point, I would say that I was starting to drift in and out, so from this point on, I am having to rely largely on what my sisters and others told me.  My sister immediately called an ambulance.  The paramedic gave me his name, as did the ambulance crew when they arrived, and the doctors and nurses at the hospital, but I have absolutely no recollection of names or faces.

 

I do remember the ambulance man asking me if I could walk out to the ambulance, which I did.  I do recall parts of the journey to the hospital, but I am told that is when my condition really started to deteriorate.  Blood pressure going sky high, and developing a fever.

 

The next thing I remember is in Resus, having these pains down my back, and I am trying to sit up, and I hear a voice saying to me, “No Barry, you can’t get up.  You’re not well.”  I was unaware that voice belonged to one of my sisters.  I lost count, but I think it was about 5 or 6 times this happened (that I could remember anyway).  I’m also told that I was becoming very agitated.  The next thing I remember, is waking up in the Intensive Care Unit.

 

I had been told that I was put into an induced coma and intubated; in other words, put on to a ventilator or respirator more or less immediately after Meningitis was suspected.  I was unconscious for around 24 hours.

 

It had initially been suspected that the Meningitis had come from the ear that had been operated on 5 days previously, but my first CT with contrast scan (while unconscious) apparently showed no signs of infection in either ear, so, like many other cases of Meningitis, the cause is, and as far as I know, remains unknown.

 

After I came round in ICU, I started throwing up again, this time due to the tubes down my throat and nose, and I was quickly taken off both.

 

By now, although very tired, I had come round by this point.  Doctor came and spoke to me:

“Barry!  How are you?”

“Uh!  I’ve felt better!”

“Barry! Where are you?”

“Uh!  I’m in the Royal Victoria Hospital.  And I think I’m in the Intensive Care Unit!”

“Barry! What day is it?”

“Oh!  The only thing I can tell you is that I was admitted on Sunday.  So if you want me to pick a day, then I will say Sunday!”

Doctor laughs and says, “No, it’s Monday!”

I ask what time of the day it is, expecting him to say that it was about 11:00 at night. “It’s just gone 12:30 in the afternoon.”

I replied, “So there’s a day gone!  Just like that!”

 

The doctor didn’t ask me any more questions, because I think he knew I was aware of where I was, what was going on and why I was there.  I was also very tired, and it was a major effort to think, never mind answer questions.

 

I was to spend 11 days in total in hospital, 2 of them in Intensive Care.  I was on a cocktail of various IV antibiotics for 9 hours a day.  I also had a further CT scan with contrast, 2 days before I was discharged to ensure that the treatment for the Meningitis had done its job.  I also had a Lumbar Puncture (spinal tap) a few hours after regaining consciousness, and this is where diagnosis of Pneumococcal Meningitis was confirmed.

 

That being said though, the first few days in hospital I think I can only describe as being a daze.  I remember bits and pieces, but not everything.  For example, in ICU, I could only tell you the name of one of the nurses who looked after me during the time I was awake.  Doctors and nurses did tell me their names, but I could only remember the name of one.  During my recovery, all I wanted to do was sleep.

 

But so many people had sent get well messages, that I wanted to reply personally to each and every one, and it took weeks for me to reply to everybody.  I might have replied to one or two before I would get tired, and my mind would go blank. But even after I got home from hospital, I was still battling the extreme tiredness.  There were times I wanted to do something, and I couldn’t, and there were times that my frustration boiled over.  I have to say this, that without the wonderful support of my sisters and their families, I do not know how I would have got through it.

 

I was to go on, and make a full and complete recovery with no lasting issues that I am aware of, although I did initially lose some hearing, and my taste buds were affected for a few months afterwards.  But again, I recovered from both.

 

I am acutely aware that there are others out there who have experienced a much more difficult and much longer recovery than me. Others have been affected by sepsis where a rash develops, gangrene sets in, and sometimes results in limbs being amputated in the more serious cases.  In some cases, it can result in extreme disabilities, paralysis and brain damage.

 

And of course, we cannot forget those who do not make it.  Around 10% of all of those who contract Meningitis sadly succumb to the disease.  Pneumococcal Meningitis, which is what I had, the death rate is closer to 15%, making it one of the deadliest forms of Meningitis, behind Meningitis B.

 

When I was in hospital recovering, I read stories of those who did not survive.  Particularly upsetting, were the stories of babies and young children who lost their lives through various forms of Meningitis.  This may sound strange to some, but it did at times, make me question why I survived and others didn’t.

 

 

The charity that I am raising funds for, Meningitis Now, provides support for all of those affected by Meningitis, whether through disabilities caused by the disease, the psychological impact of having Meningitis, whether on the patient, on a loved one, or both.  The funding also provides support for those who sadly, have lost loved ones to Meningitis, through bereavement counselling, financial support or both.

 

The funds raised also go towards vital research into new treatments and vaccines.  Over the last 30 years, Meningitis Now, it’s predecessors (Meningitis UK and the Meningitis Trust), among other Meningitis charities throughout the world, have provided funding into research which has produced more effective treatments in treating Meningitis.  Funding has also gone into development of effective vaccines into various strains of Meningitis, such as various types of Meningitis A, C, X and Y.  But even with that said, there are still many, many strains to which there are currently no vaccines available, and continued research is needed to produce new vaccines for those strains.

 

As it stands in the United Kingdom, vaccines for Meningitis B (sometimes known as Men B or Meng B) are only available on the NHS to those aged 2 months, 4 months and one year.  There is a campaign underway to expand the Meningitis B vaccine on the NHS to all those at 11 years and under, and to those adults with health problems who would be considered at increased risk.  It is a campaign that I fully support, and am proud to have signed the petition.  I, like many others, believe the Meningitis B vaccine will make an enormous difference to the numbers contracting Meningitis B, and in turn, will eventually bring the death rate down.

 

Meningitis Now is entirely funded by donations (private and public) and through various channels of fundraising, whether through coffee mornings, cake sales, jumble sales, car boot sales etc., though sponsored walks, treks, hill walking, mountain climbing, triathlons, marathons, half marathons, and fun runs etc., among many other initiatives.

 

So, why am I willing to do this challenge?  Because of my own experience of Meningitis, this challenge has become very personal to me.  I have no doubt that the research previously undertaken to find more effective treatments, certainly at least played a part in saving my life, as well as that of many others. Simply, I want to try and give something back.

 

The trek is at the moment, still in the planning stage, but once details are finalised and confirmed, I will be putting up a Just Giving, or Virgin Money Giving page, and I will be asking for your help.

 

Iceland’s Wilderness Challenge

Discover Iceland – Ice, Rock & Fire!

Iceland Trek letterbox

 

For details of “Iceland’s Wilderness Challenge” for Meningitis Now, and the planned itinerary, then please go to:

 

https://www.meningitisnow.org/support-us/all-events/icelands-wilderness-challenge/icelands-wilderness-challenge-itinerary/

 

Thank you.