Why I started this blog

In May 2014 I was diagnosed with a Colloid Cyst and Acquired Hydrocephalus.

On the 20th August 2014 I underwent a Craniotomy and transcallosal craniotomy and excision of Colloid Cyst operation.

The lack of information available at that time was awful, it was almost as if this condition didn’t exist because there was so little information available on the internet.

Usually, if you look up any condition, disease, operation or similar, you will find rafts of information but for a Colloid Cyst? Hardly anything.

My wife was going out of her mind with worry, I was being brave until the day of the operation and the reality and enormity of the situation hit me and all in all, it was a scary time for us all, not knowing what would happen next.

So I decided I would document my recovery process.

  • What my symptoms were before the diagnosis and how they affected my everyday life
  • The diagnosis itself
  • The operation and subsequent recovery period in hospital
  • My return to work
  • My health since August 2014
  • Small issues since the operation
  • My mindset (this is the biggest change)

DISCLAIMER

I’m no Doctor. I have no medical experience whatsoever and I would never, ever want anyone to take what I write here as advice. I DO NOT GIVE ADVICE.

Doctors, Nurses and Neurosurgeons are all brilliant at what they do and I wouldn’t be alive today if it wasn’t for their skill, knowledge, experience and expertise.

My aim is simply to tell you my journey from symptoms, diagnosis, operation, recovery and moving on with my life.

If at least one person takes comfort from what I have written, then that is all I want as there wasn’t a great deal of information that we (my family) could find on this strange, under reported condition.

I will also scan various documents in here that I received from the Neurocentre and Neurosurgeon during the whole process to show you my progress and to of course provide validity to what I am saying.

Best wishes always…Mark

 

 

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Staying Strong

Stronger than I think (1).png

There are days when I just want to curl up and die.

Today was one of them.

My headaches were just killing me. Things didn’t happen which I thought would. My day was just choc full of disappointment.

And then I realised.

I’ve been through much much worse than the shit I had to deal with today. Much worse.

When things get bad, just think about the worst days you have ever had to deal with and then your bad day doesn’t seem like any big deal after all.

February 2018 update

keep on

I thought it was about time that I posted an update since my last one almost 8 months ago.

The best way to do this is to break it down into each area that affects me now, as this will be easier for those people who have just been diagnosed with a Colloid Cyst to understand what may or may not be waiting for them down the road.

However, let me point out right now that this condition does not lead to a debilitating lifestyle nor is it unmanageable. In fact, if I didn’t have such a stressful finance job, I think I would be far better placed to deal with the problems I am facing.

The key to me is calm simplicity. Do the following:

  • Avoid stressful situations.
  • Avoid conflict.
  • Avoid negative people or negative situations.
  • Eat well and nutritiously.
  • Exercise or walk regularly.
  • Laugh.

The last one may sound like a silly thing to many people but laughter releases me somehow. It makes me happy and smile and it stops the frequent “woe is me” situations that I seem to gravitate towards these days.

So in no specific order, here is how I am finding the following areas of my post-Colloid Cyst life.

Tiredness

Still far and away the biggest problem I face and I’ll readily admit, it’s a struggle. I wake at 5am or 5.30am every single day. The reason for this is probably because I have to go to sleep at 9pm. If I go to sleep at 9pm I guarantee that I will be asleep by 9.02pm.

I just cannot stay awake and yet, I am in a job that means I have to attend functions which go on past midnight and it is a real struggle to do this, fortunately, they are only every few months or so otherwise my career would be in jeopardy.

Headaches

Most of the time but not every day. Often, they are the result of extreme stress so it is difficult to know if this is the is the reason or because of my removed Colloid Cyst. Sometimes they are debilitating and sometimes they are just an ache…Either way, they do affect my work to some degree.

Vision

This is the one that causes me most angst. There is at least one occasion every two weeks or so where my eyes go milky. What I mean by this is that I appear to get a ‘milky shadow’ that goes across my eyes but again, I cannot rule out stress as the problem rather than a Colloid Cyst.

Quite often, this happens when I drive so it may be a psychosomatic condition and one that can be cured by Hypnotherapy or similar.

The ‘milkiness’ affects my vision so much that I cannot actually see out of one of my eyes when it happens and it’s scary, no question.

Mindset

This is tough at times too. I have a naturally happy disposition…I am a joker and the life and soul but when I get a ‘down’ day…Boy, do I get a down day! I really do just want to pull the duvet over my head and not wake up.

I don’t mean that I want to kill myself, far from it but on my depressive days, I just don’t want to be here, there is a difference.

It could also be that my time of life (I am 50) is a by product of my negative mindset…I really don’t know.

What I do know is that on my good days, which to be fair is most of the time, I am in a happy, smiley, joyous mood. I also feel compassion for others like I have never felt previously and I have an overwhelming sense of wanting to help people.

Before my Colloid Cyst diagnosis and subsequent removal, I was a pretty heartless person at times, especially about those less fortunate than me.

I wasn’t nasty, I just didn’t care about anything or anyone apart from my immediate family and yet now, I feel love for everyone.

So there you have it. My update for February 2018.

If you have any questions or would like to feature your story here, please let me know.

Mark x

 

I’m taking time out

UnthinkMy last update was on the 21st May and it’s now the 29th July 2017.

My head hurts. The dull pains I get at the base of my skull just above my neck are getting worse and it’s getting me down.

I’m paranoid that the Colloid Cyst has come back and yet I’ve had a clear MRI just a few months ago.

I’m still losing my vision at times…My eyes go ‘squiffy’ and I can’t focus for about a minute and I find it really scary.

I’m getting dizziness again, especially if I turn around too quickly or get up off the floor if I’ve been crouching or sitting down.

The doctors have tested me for brain issues and there are none. The opticians have done the same for my eyes and they are fine (in fact my short sightedness has improved so I barely need glasses anymore).

So…I have come to the conclusion that it is stress that is causing my issues. I mean, what else can it be? This was my life when I was first diagnosed with a Colloid Cyst.

I am going to take a couple of months away from this blog to unthink, unwind and start walking again.

I need clarity where my mind is fuzzy at the moment and I need to stop looking at electronic devices again.

See you soon…Mark

 

Results of my MRI – May 2017

Eventually, I received the results back from my doctor for the MRI that I had done in January (or was it February?) 2017.

Nothing found.

Apparently there is brain scarring consistent with someone who has had a craniotomy but apart from that, all seems ok.

It doesn’t help me though because I’ve still got this dull, nagging pain at the base of my skull and my motion is still a problem.

The best way to describe it is that when I turn my head from the left to the right quickly (or vice versa), it feels like it takes a second or two for my eyes to catch up with where my head is.

Does that make sense?

It makes me feel nauseous and it worries me when I drive, so much so that I made yet another appointment at the Doctors.

I explained what has been happening, she knows my Colloid Cyst history quite well as I have spent some time with her over the last few years.

Again, nothing appears wrong. She asked me to stand up straight with my eyes closed. She pushed me with one finger at different parts of my body and I had to stand rigid without falling over, which I did (not sure what she was trying to achieve).

She asked me to close my eyes and walk in a straight line with one foot in front of the other, a bit like the DUI test in the US (I think) which I did.

I also had to follow her finger as she moved it left and right and touch it with my finger.

All, apparently, ok and my problems simply put down to getting older (I just turned 50) which doesn’t make me feel great if I’m honest. Is this what I have to look forward to now? Ailing health? Brilliant.

Perhaps I am a Hypochondriac like my wife tells me all the time!

Opticians

I seem to have eliminated all potential issues so either I am being a full on basket case or my eyes are causing me issues. There simply isn’t anything else I think it can be.

I have made an appointment with an optician as the previous visit a few months ago didn’t highlight any real issues, however I didn’t get a great deal of comfort from their prognosis as they seemed distracted when actually doing my eye test.

In fact, they barely made mention of the fact that I lost my vision one day whilst driving and that in itself was enough to make me worry they were missing something! So, I am visiting a different optician this time.

I get a heaviness above my eyes and some days, I just want to close them even though I am not tired…It’s like someone has strapped a weight to my forehead.

Update to follow after my visit today (Sunday May 21st 2017).

February 2017 update

After my recent problems…Debilitating headaches, vision problems and general ‘full-headedness’, I seem to have plateaued.

I still get vision problems but only when I have been looking at the PC screen for hours on end. The nauseous feeling seem to be there almost every day and I just ache at the back of my head.

For months now, I have been convinced that my Colloid Cyst has come back. It doesn’t matter how many times my wife tells me that it hasn’t and that I am being  a drama queen, I just feel that it has.

I have no medical knowledge to back this up but on the 13th March 2017, I go back to hospital for another MRI and either way, I will have a little bit of closure about the situation.

It could be that I am suffering from that condition that most brain surgery patients go through, the “I know I’ve had an operation to remove (insert the thing) but I just know that it has grown back” scenario.

Not intelligent and completely without any basis but I just can’t help it.

Blood Test

The constant shit feeling that I have been experiencing led me to the doctor. Bearing in mind that I went to the doctor just twice in 20 years before I was diagnosed with a Colloid Cyst, it’s still a big deal for me to go.

A blood test was arranged and as I write this, the test has come back ok.

My cholesterol is a little too high but my blood pressure, liver, kidney and test for diabetes have all come back fine so the final piece of my jigsaw is the MRI on the 13th.

Once I have the results of the MRI, I will make another post.

 

 

 

 

 

December 2016 update

My initial stupid diagnosis appeared to be correct.

My severe headaches and general ‘feel like shit’moods have definitely subsided in the last week and a bit, due I believe, to me drinking a lot more water.

The headaches which I felt at the back of my head are still there but nowhere near as much as they were, in fact I can now go all day without getting one and when I do, it doesn’t appear to effect my vision as it did before.

I have been drinking a minimum of 3 pints of water a day and have not got into a ritual where I drink 1 pint in the morning when I wake up.

I do it in two stages…Half a pint when I wake (a water jug is next to my bed as I only drink room temperature water) and then half a pint after my shower. The other two pints are then pretty easy to fit in during the day and sometimes I drink 4 pints.

I’ve started exercising more too and this has helped but this could just be due to the fact that I needed to improve my general fitness anyway.

The final thing to mention is that the two crevices on the top of my head, where they entered my skull to get to my brain, are slightly less pronounced than they were previously.

Again, this could simply be a case of me hydrating my brain/body again.

I still don’t feel 100% but I am getting there again I think. All I want to do is get to where I was 6 months ago when I felt absolutely fine and dandy.

More updates to follow shortly.

Colloid Cyst Update – December 2016

This is a quick update on my recovery from my Colloid Cyst removal back in August 2014.

I feel pretty bad.

The headaches which I never had before I was diagnosed (at least not very much at all) are chronic. I feel them at the back of my head, right at the base of my skull on the right hand side as you look at me from the back.

I’ve even started to think (imagine?) that there is a lump developing. I’ve asked my wife and she said there isn’t but I feel something or think I do. I’m not sure what I believe anymore.

The headaches have been pretty constant for all of December and a week in November. It is the 17th December as I write this. I just find them draining and I feel like I want to push the back of my head to make them go away.

Is this normal?

The worst incident since my Craniotomy

I was driving my car back from work. I have to drive 30 miles which takes about 45 minutes in traffic when I leave my office at 5 or 5.30.

I was just over 2 miles from home on the motorway when my vision began to go funny. I started to get slight double vision and then it got so bad that I had to pull over on the hard shoulder.

I had to cross 2 lines of traffic and panicked because I couldn’t judge the distances of the cars next to and behind me.

I literally couldn’t see properly and I was really scared. I got out of my car but couldn’t even see the car properly. The double vision was so bad that I couldn’t make out the distance on the car so when I got out, I had to feel my way around the car to get on the other side with the fast motorway traffic whizzing past me.

I tried to call my wife but I couldn’t tap the numbers as my perspective had gone and the keypad wasn’t visible properly. It looked much further away than it was and I just couldn’t find the contacts icon or get my hand to eye co-ordination correct.

Now I was really scared.

After 2 wrong calls (I just couldn’t press where I needed to on the contacts list) I eventually got hold of her.

She calmed me down – she always does and told me to walk well away from the car to avoid the traffic. She told me she would drive to me but that she was over an hour away so instead suggested calling an ambulance.

I made it very clear I didn’t want an ambulance as I know that would mean I would have to go into hospital for more tests which could affect my job, etc. I just needed time to think.

I stumbled over the metal barrier and walked onto the muddy embankment. I was in my suit and my shoes were completely enveloped by the freezing mud which was seeping into my shoes and making my socks wet but I didn’t care.

After what seemed like a very long time but in fact was only about 10 minutes, my vision started to come back.

After 20 minutes it was almost back to normal apart from a sense that ‘I wasn’t all there’. What I mean by that is that I could see but I felt a little like I was out of my body and observing myself. I can’t really describe it very well except to say, I knew something had happened.

The 2 mile drive took me almost 60 minutes. Not because there was a lot of traffic but because I came off the motorway to use the side roads and I kept pulling over every 5/6 minutes or so and going for a walk or just sitting in my car.

When I eventually got home I had a splitting headache and I went to bed despite my wife’s protestations that I should see a doctor.

Since then, there hasn’t been another incident, nor has there ever been one like that prior to this one, although I now have to fight off anxiety attacks whenever I am in my car.

It may simply be a one off.

My stupid ill-informed diagnosis of what happened

Lack of water.

I was warned and warned by the nurses that I needed to drink more water. In fact, they wouldn’t let me leave hospital until I did and I’ve normally been pretty good about it apart from one or two occasions.

This time, I have been so busy with work that I think it was probably 3 days or more since I had drunk a pint of water and I must have been severely dehydrated. I know that when I don’t drink water the headaches get worse so perhaps dehydration is key to this whole process?

But they don’t go away completely even when I drink a lot of water, plus the fact that up until very recently, I didn’t get headaches much at all, certainly not like I do now which is every single day.

My motion sickness has also got a lot worse.

I only have to turn around too quickly now and I become slightly disorientated.

I will post more updates in the coming weeks to let you know if things are better or worse.