Brain tumour


I have struggled with myself for some time as to whether I should put something on my site about my brain tumour, but in the end I decided to do so in the hope that it might help someone else with this condition.

For a few years I had been slowly loosing my hearing in my right ear while simultaneously developing tinnitus. I also seemed to be developing inceasing problems with my balance. I had mentioned this to my doctor several times until in early 2013 he sent me for some tests.

Diagnosis Sep 2013

I had expected it to be some kind of blockage like wax, so you can imagine my shock when in September 2013, after a series of inceasingly intricate tests, I was diagnosed with a brain tumour.

The type of tumour I have is called an Acoustic Neuroma and it is actually rare, with between forty and sixty diagnosed in Britain each year.

It starts in the inner ear canal and from there grows out into the brain.

Acoustic Neuroma

There are various symptoms - Some people have no symptoms and it is only discovered by accident. Most people I have spoken have only one or two of the above symptoms. I have the first five.

A tip - when you go in to talk to your consultant and he says that he has found something, it is never going to be something good!

He told me not to worry about it as it might not even grow any futher and if it did it would be another five years before it would start to cause me any real problems.

After having said these re-assuring words, he went on to say that I should check my life insurance, as if I had critical illness cover I could claim on it and pay off my mortgage. He would fill in all the neccessary forms for me.

Well of course I didn't. Twenty two years earlier when Karen and I had taken out the cover we had the option of adding on unemployment cover and/or critical illness. We couldn't afford both so went for unemployment.

We have never claimed on the unemployment cover. I hope you appreciate the irony of that.

One positive outcome from all these hospital tests was that apart from the tumour, I was in excellent health and physical condition for a man of my age. My odds of having a heart attack in the next ten years were 2.5%. The normal for even a healthy man of my age is ten to twenty. So that was nice!

I'm not going to go any further into describing this kind of tumour, there are other excellent websites which cover it such as acousticneuroma.net where you can also listen to actor Mark Ruffalo's account of having acoustic neuroma surgery.

So I took his advice and got on with my life. During the next two years I even became a National Powerlifting Champion! When I celebrated my fifty-first birthday I could honestly say that I was in the best shape of my life. A year later however things were very different!

When things got bad! August 2015

At the beginning of August 2015 I was sitting on our sofa with my wife watching the news when I started to feel very warm. I felt so warm that I have described it as feeling like someone had poured a kettle of boiling water over me. The perspiration was litterally running off me. I started to feel giddy and the room started to sway around me. I realised I was having a vertigo attack. I then felt violently sick and just managed to make it to the downstairs bathroom where I spent the next couple of hours being sick. By the time this had settled down I manage to crawl upstairs on my hands and knees and crawl into bed where I lay as for dead. It took me a full week to recover from this attack.

In the coming months I had repeated attacks. I discovered that these attacks had been caused by the tumour whch was growing further into my brain causing it to loose equalibrium.

In October 2015 my driving licence expired and on the application form for renewal there is an actual medical question 'Do you have a brain tumour?'. So I lost my licence.

By November the attacks started to lessen in frequency and severity as my brain began to adjust to this new situation.

In the same month I had another scan which showed that the tumour had grown more than expected. During the discussion afterwards my consultant decided to dewax my right ear to see if it would help my hearing. Which it did. However as soon as I got home I realised that this had made my tinnitus much worse! I have since spoken to several people who have had the same experience after having their ears dewaxed.

During the coming months this was like being tortured twenty four hours a day. I had to listen to white noise both during the day and especially at night to try to get some sleep. I also had to use sleeping tablets for the first time in my life. By now it had become physically painful as well.

During this time I began to appreciate why some people have killed themselves just to get away from the noise. Indeed if I had not had the total love and support of my devoted wife Karen - well who knows?

In February 2016 I accompanied Karen on a business trip to Peterborough in England. However I discovered during this trip that I can't fly and I ended up in Peterborough hospital and had to come home via train and ferry.

After this the tinnitus became even worse and I started having vertigo attacks again.

Clinical depression

During this time I was suffering from increasing depression, though I wasn't aware that this was what was making me feel soo bad. I knew something was wrong and I repeatedly said to Karen that I was in trouble but I didn't know what it was or how to get out of it.

I had lost interest in almost everything in my life. My home, my writing, weight training (which I hadn't been able to do since the previous August anyway), in eating (food had no taste to me and I now ate only because I knew if I didn't I would die). The only thing I still cared for was Karen.

I eventually went to my doctor who immediately diagnosed clinical depression.

What is Clinical Depression?

N.B. Some people still think that depression is trivial and not a genuine health condition. They're wrong. Depression is a real illness with real symptoms, and it's not a sign of weakness or something you can "snap out of" by "pulling yourself together".

Symptoms of Clinical Depression

Psychological symptoms include:
Physical symptoms include:
Social symptoms include:

I know I've gone into a lot of detail about this, but I have done so because I must impress on anyone reading this that Clinical Depression is a physiological illness and it can be treated.

It is not something to be ashamed of! It does not mean you are a weak person!

So if you feel like this go see your doctor.

As for me I had all of the above symptoms except for the mentrual problems of course and feeling suicidal. I had also lost two stone in weight.

What actually causes Clinical Depression

It is caused by a reduced level of Serotonin in the body. This is one of our 'feel good' chemicals. When you are under stress, emotionally of physically, your body uses more of this chemical until if the situation is not addressed, the levels fall to low.

Serotonin serves a number of functions -

My doctor put me on a six month course of anti-depressants, which was later extended to one year. I was also advised to go for as many long walks each day as I could.

I now felt so bad that it was clear I could no longer go to work and indeed I needed, or at least felt I needed, someone with me at all times. The doctor seemed to agree with this and so my devoted wife took a month off work as unpaid leave to be with me. During this time I walked her poor feet off every day. I also at doctors advice started some light exercise, with aerobics. I cannot emphasis enough how important exercise is in getting out of depression!

Tinnitus management hearing aid March 2016

I was off work for five weeks, during which time (March 2016) I was fitted with a tinnitus management hearing aid at the Royal Hospital in Belfast.

It is a normal hearing aid, but with a second program added. This is a white noise program which is set specifically to your own condition. You can use it as a normal hearing aid and also switch on the white noise program to help counter the tinnitus.

How?

It has to do with how tinnitus happens.

The most common cause of tinnitus is reduced hearing. Not the normal hearing lose associated with aging, which is slow, but rather a fast hearing lose which is what had happened to me.

Your brain is used to receiving a certain level of noise. If this is reduced faster than it can adapt to the new situation it 'goes looking' for a sound to make up the difference.

If it doesn't find this via the ear it then 'sometimes' starts producing it's own noise. This is tinnitus. So if a hearing aid allows your ear to now pick up the previous level of 'hearing' noise, it masks the sound of the tinnitus, after some time, perhaps months or even years, the brain may stop producing it's artificial noise. This process is call habituation.

Sadly before this process was fully understood and people still thought it was produced in the ear, some people had their entire ear mechanism removed but of course it didn't help.

Hyper-sensitive eardrum

I also at this time had developed a hyper-sensitive eardrum. This meant that any loud or even moderate noise was actually physically painful to my ear. I could no longer do things like going to the cinema or any social outing as the music which is always played in restaurants and pubs was unbearable to me.
This got soo bad that, among many other things, I could no longer even eat toast as the sound of it crushing in my mouth was uncomfortable.

I purchased an ear protector which I used when doing anything loud, such as using a mixer in the kitchen or mowing the lawn. I still use it just in case.

Cognitive behavioural therapy

When my doctor diagnosed me with Clinical Depression he also set up an appointment for some sessions of Cognitive Behavioural Therapy.

Cognitive Behavioural Therapy (CBT) is a talking therapy that can help you manage your problems by changing the way you think and behave.

This did indeed turn out to be very helpful and I would recommend it to anyone in a similar position.

The therapist I spoke with was really very good and helped me think through a lot of issues, not just medical but other things in my life as well.

All of which helped to destress my life to a large degree, which carried over into improving my medical problems.

Improvement August 2016

As for the tinnitus management hearing aid - it worked! Within a couple of months the tinnitus had started to ease as had the hyper-sensitive eardrum.

At the time of writing this - August 2016 the tinnitus is much better. I can now sleep easily without white noise and during the day I am hardly aware of it at all. Also the hyper-sensitive eardrum has improved dramatically.

Looking back over the last twelve months I can honestly say it has been the worst year of my life. I had gone from being a very fit and active fifty-one year old to a fifty-two year old who feels more like he thought he would at seventy-two!

But things have now settled down a lot and I have even started weight training again, though at a much reduced level, frequency and intensity. I have gotten back my interest in my life, my hobbies, my writing, my home and garden, my work.

Also I have just gotten my licence back. It is medically restricted and for only three years. I can't drive anything other than a car. Not even a car towing a trailer, for some reason. But I'm very happy to settle for just driving a car.

On a day-to-day basis my greatest problem is my sense of balance which is not good. I cannot climb ladders and try to avoid standing on stools or chairs - you know the type of thing you do around the house or garden when you're trying to get at something just out of your reach.

I have had to get my garden landscaped to remove any large shrubs and hedges such as conifer trees because I cannot stand on anything to trim them back.

Downhill again Sep 2016

Towards the end of September 2016 I started having another bout of vertigo attacks.

I can only assume that the tumour has indeed grown again.

This bout was more severe than the 2015 one, both in intensity and frequency of attacks. I was very incapacitated. For the first time I had to use a stick to get about in the house. I was unable to go out at all and was eventually off work for twelve weeks.

I am soo lucky with my employer! Any private company would have had to let me go by now, and understandably so.

The tinnitus got a bit worse as did the hyper sensitive eardrum. Though thankfully not nearly as bad as they had been at the beginning of the year.

I had two MRI scans in November which showed that the tumour had indeed grown by one millimetre, less than last year. This was surprising considering the severity of the vertigo attacks.

I am awaiting the next chat with my consultant, which should be on 29th January 2017.

At the time of writing this (02/01/2017) I am back to work, but still using the walking stick when outside and at work.

Registered disabled January 2017

I am now registered as disabled with the local social services.

As you can imagine, for someone as physically active and able as I was, this is a HUGE life style and attitude adjustment!

Gentamicin Treatment? February 2017

So I've just had my latest consultation at the Royal. I got three consultants this time.

As I have had such bad vertigo lately (since end of September 2016 I've only been in work three weeks!), they have suggested something called Gentamicin Treatment.

What this does is completely kill the balance mechanism in the ear (for me it would be the right ear).

I would be in bed for a while as I would have no balance down the right hand side and would be experiencing severe vertigo.

Hopefully my body/brain would then readjust to the new situation and I would get normal balance back.

As I would then have only one balance organ I would not have vertigo, as this is caused by the imbalance between the two organs.

In my case the imbalance problems and vertigo are being caused by the tumour.

As with everything there are possible side affects - such as hearing loss (and with that the treat of tinnitus), and if your body/brain did not fully readjust I'd be left with permanent balance problems.

As you can imagine I am extremely apprehensive about this.

The consultants all agree that stress and fatigue can bring on vertigo.

So I'm going to give myself a few months and try to illiminate these (I have been through a lot of stress lately), and see if I can get a handle on the vertigo.

My employer had also very generously agreed that I can work from home three days a week, as travelling agrivates my condition.

Will keep you posted.

Mini strokes - 2017

From the start of 2017 I have been having what I initially thought were just a new form of vertigo attack.

With this I experienced what feels like something moving over the surface of my brain, followed by disorientation and loss of physical strength and balance. I would have to lye down for the next few hour untill I felt strong enough to move again. After this and for the next couple of days I have a severe headache.
Sometimes these feel like the movement of over the entire surface of my brain, but sometimes it is localised to a small area.

However when I mentioned these to my doctor I was surprised when he diagnosed mini strokes!

So I am going through a series of new scans and tests over the coming months to try to identify what is causing this.

Is it the tumour?

I can only wait and see.

But the results will decide where I can go from here.

The future

So what does the future hold for me?

Apart from the Gentamicin Treatment which doesn't affect the tumout there are two treatments for an acoustic neuroma.

Gamma knife radiation surgury

This involves directing a targeted beam of radiation at the tumour while the patient's head is fastened to the surgical bed so they cannot move. It is a day procedure. Success rates are very high for this treatment which aims to kill the tumour not remove it. Though if successful the tumour can sometimes shrink in size after it has died.

Risks are relatively low but include the following - This procedure is only effective while the tumour is not over 25mm / 1 inche in size.

If you are / have suffered from tinnitus then total loss of hearing will almost certainly mean the tinnitus will remain / return, but you will not be able to do anything about it.

So it is a matter of balancing the risks of surgury against your current quality of life, and of course the size and growth rate of the tumour.

Physical surgery

The risks here are the same as above, but the percentages are much higher. Hearing loss risk is 80%.

The other risks of physical surgery are leakage of blood and / or fluid into the brain causing brain damage.

Because of the risks of both procedures they are not something you get done unless you have to. So it is a matter of balancing the risks against your quality of life. But if you can, then obviously the radiation would be the one to go for. Thankfully I am still in that position.

Scans

I will have an MRI (Magnetic Resonance Imaging) scan every year at least to check on how much the tumour has grown. It will mostly be based on this that the decision will be made about treatment options.

Vertigo

I will probably keep having repeated attacks of vertigo as the tumour continues to grow and presses more on my brain.

Tips

N.B. As you can see from above I emphasis rest, sleep and a stress free (both mental and physical) life. But this is true for everyone, no matter what your state of health is.