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

 

 

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.

Colloid Cyst Recovery and Update

In August 2016 it will be 2 years to the month that I had surgery to remove a Colloid Cyst from my brain.

I wrote previously about the symptoms of a Colloid Cyst that led me to surgery and the purpose of this post is to give comfort to those of you who have just been diagnosed or who are awaiting surgery.

Even if you are reading this shortly after your surgery, hopefully you will see that some 2 years after my Craniotomy, apart from one or two small issues, I’m ok.

Your family will worry, it’s natural. You will be scared and again, it’s natural to feel that way because any brain surgery comes with risks.

So here I will attempt to break down into bite sized chunks exactly how I felt immediately after surgery, the weeks and months after and I will document the issues I faced.

The Craniotomy

My surgery took 11 hours due to the difficulty getting access to the cyst. I ended up with 19 stitches on the top of my scalp and I spent a further 5 hours in ICU (Intensive Care Unit) where patients who have undergone brain or heart surgery are monitored closely.

I don’t remember any of this of course but I do remember getting wheeled back to my ward asking the nurse, “are we going into surgery now?”.

At this point, I felt no pain.

Immediately Post Surgery

I came back to my ward at 10.15pm. I was in a ward of 6 men, all of whom had undergone brain surgery of some sort. I remember waking up and feeling groggy (due to the morphine) but ok.

I remember a nurse coming up to me and telling me that one of my back teeth fell out when they were removing the tube from my mouth which was a bit odd but that was it.

I also noticed that I had a catheter (urinary catheterisation) fitted to drain my bladder and soon after, I drifted off to sleep.

The next few days

I remember having no appetite whatsoever. It was nothing to do with the hospital food, you could have served me up a Michelin starred meal and I wouldn’t have eaten it.

Over the 7 days I was in hospital, I lost over a stone and a half in weight.

The catheter was removed after 2 days and I could then move about a bit. Even though I was wearing compression socks to stave off blood clots, I was conscious that I had to move more so I would shuffle off to the bathroom as many times a day as I could or to the waiting room which was further away.

Keep drinking water

That’s the message from the nurses all day every day. I simply didn’t drink enough and they started to get annoyed with me and were telling me that I wouldn’t be allowed home until I started drinking more water.

Overall, I felt fine. I knew my movements were slow but I felt ok.

The day I was released

The thing I remember most of all is hunger. I’m not a fast food eater at all but wow, how I wanted a McDonalds meal and when I did, it tasted like a slice of heaven!

7 days after my admission, my wife and daughter picked me up from hospital and took me home. I was still in my dressing gown and still had the stitches and protective tape on my head.

I came back home that day and sat on the sofa with my wife, youngest daughter and my Mother-in-Law.

I cried.

It sounds silly I know and that I should have been more of a man and I can’t explain why I did but I just started sobbing.

I never showed much emotion before or after the operation but on that day, coming home and sitting there with my family, the enormity of the situation hit me.

I remember thinking, what now? How do I earn money for my family? Will I ever work again?

A myriad of things went through my mind and it all got a bit too much and I fell asleep right there on the sofa.

My wife was beyond amazing during this time as was my youngest daughter (my oldest daughter was in work) and I will never, ever forget their love and attention that they showed me at this time.

My youngest daughter even waited outside on the landing with the bathroom door open whilst I took a bath, just to make sure I was ok.

My wife would come in and gently wash the wound on my head and both would encourage me to go for a short walk around the block to get moving.

The weeks and months after surgery

I started working again in November 2014, just over 2 months since my surgery. I’m not going into detail about my working patterns here, suffice to say that I returned probably a little too early as tiredness is the biggest issue that I have faced but overall, I felt ok.

Changes I have noticed since my operation

You will hear all sorts of things from various brain surgery patients so i thought I would list the issues I have faced.

  • Tiredness. In the first few months after surgery, I got really tired. Some 2 years later I am in a pattern which involves me going to bed at 9pm and getting up at 5.30am. Sometimes it will be a little later either way but that is the biggest change for me – I simply struggle to stay up late.
  • Flashing lights/strobes. Before surgery I had no problem with these, you know, the type of thing that a TV news reporter will say “these pictures contain flashing lights and images”. Now, I have to turn my head away when they come on the TV because they make my head spin. The same with…
  • Scrolling on my iPad or laptop. Again, I can’t scroll through my laptop because it makes me feel sick and my head spins. As does…
  • Speed. I used to drive a Porsche and I loved the feeling of acceleration but now, it not only scares me but it makes my head spin and my eyes roll. Even on motorways now, I rarely go above 65mph.

It appears motion sickness is now a problem for me.

  • Headaches. Right at the back of my head at the nape of my neck. Sometimes they are quite bad and make me want to lie down but I can go weeks without having one.
  • My attitude. For some reason, I am a lot more tolerant, a lot more relaxed and a lot calmer. Nothing seems to faze me and my family have noticed how patient and thoughtful I am compared to before.
  • Emotions. I cry at everything now. Movies, kind words from my family, human and animal suffering…I just cry a lot and I don’t know why.
  • Anxiety attacks. I think this is because every time I get a headache or a strange feeling in my head, I worry it is something more. This is self perpetuating and I read more into it than it actually is and end up getting slightly panicked.

As you can see, apart from tiredness and motion sickness problems, I am generally ok.

The other thing is cosmetic.

Where the incision was done on my head, I have two small indentations either side. I’m not sure of the reason for this but if I didn’t have any hair, they would definitely be noticeable. They are sort of like mini craters, the kind you would see on the moon.

One thing I do notice about them though is that when I am dehydrated, these two indentations become deeper, so they are obviously linked to water and hydration.

Summary

I feel ok, I really do.

I get tired all the time but as my wife says, what do you expect when someone has been poking around your brain for 11 hours; It’s going to leave its mark in more ways than one.

I am working full time in a demanding executive job. I can still remember the lyrics from 80’s tunes that I haven’t heard in 30 years and I don’t wander aimlessly around supermarkets forgetting what I came in for.

I do get a bit of short term memory loss, mostly people’s names that I have recently met but I think I have always been that way.

As I say, apart from the odd headache, tiredness and motion sickness, I feel fine.

I hope this has given you some comfort that you can and will recover from a Colloid Cyst.

Symptoms of a Colloid Cyst

My symptoms may or may not be typical but all I can do is write about how it was affecting me prior to my diagnosis.

In mid 2013 I started to get dizzy spells. Usually though, it would manifest itself only when I was bending down and getting up quickly so I simply put it down to the sudden change in movement.

Over time they gradually became more frequent, about 2/3 a week as opposed to 2 a month at the beginning They were also becoming worse and would take slightly longer to recover from…a minute or two instead of the previous 20 seconds.

The worst feeling though and the one that finally led me to the doctors was the strange and uncomfortable feeling of what I described as “full head-edness”. Later on, this would be diagnosed as Hydrocephalus.

It was like my head was stuffed full of cotton wool and although I was coherent and lucid, the feeling was just so strange and I just knew something wasn’t right, although I never felt there was anything really bad happening.

IMPORTANT – MY MISDIAGNOSIS

When I went to the Doctor, they originally diagnosed me with an inner ear infection and depression (due to the lack of sleep and the pressures of running my own business) and prescribed me Fluoxetine, more commonly known as Prozac, a well known anti-depressant drug.

Incientally, I never took it as I just knew that my problems were not down to being clinically depressed. Fed up, tired and angry but not depressed – even I knew the difference.

The 2nd time I met with them they diagnosed me with Ménière’s Disease (also known as endolymphatic hydrops), a type of inner ear infection that can affect hearing and balance and cause Vertigo.

This was because I also had slight Tinnitus but the reason I had this is because I used to be a mobile DJ and the years of loud music took their toll on me, hence the Tinnitus.

They confirmed their diagnosis that I had Ménière’s Disease the 3rd time I met with them too and only ruled this out after my first MRI, some 6 months after my first visit to the Doctor.

The other major things to note:

The biggest ones for me personally, were my massive mood swings and inability to sleep.

Running your own business is hard. Forget the ‘glory’ stories of guys making millions, I was just trying to put food on the table for my family and I worked at least 12 hours a day in the week and 4 hours each day at weekends.

There was no respite as I had to deal with staffing issues, supplier problems, cashflow problems, etc.

As an aside, I do feel that the massive pressure I was under contributed to the Colloid Cyst. There is no medical evidence of course but using a mobile (cell) phone for at least 4 hours a day every day for the last 20 years or so, must have take its toll in addition to the huge amount of stress I was under.

One day, I threw my PC monitor against the wall. Another day I turned over a desk in the office.

It wasn’t like me and now (in hindsight) I believe that the Cyst was to blame or at least partly to blame.

The first time I went to the doctor was about the ‘fuzziness in my head’ but I also realised when talking to him that I was only getting 3/4 hours a sleep a night. Some days, I wouldn’t even go to bed and I was at my wits end.

Is that a symptom of a Colloid Cyst?

I don’t know but again, it is what affected me at that time and that is all I can tell you.

It got so bad that my family were scared to give me bad news or make me aware of a problem with the business for fear of setting me off.

This just isn’t like me and since the operation, I am back to how I was when my wife and I first met…laid back, pleasant, accommodating and thoughtful.

Not this monster who would scream and shout (and I did) at every minor issue.

Symptoms of a Colloid Cyst in order of the effect on me

  1. Full headedness or fuzziness (numerous times a day every day)
  2. Mood swings (every day)
  3. Inability to sleep (every other day)
  4. Dizzy spells (every few days)
  5. Mild headaches (hardly ever – perhaps 1 a month)

I think you can see from this that the headaches that people speak about in relation to a Colloid Cyst, rarely bothered me.

I keep saying it but the feeling of being fuzzy headed or full headed was the most prevalent. It was just odd. Like my head was permanently under water and that is the feeling and symptom I most remember.

I’m not saying that these symptoms will be the same for everyone, far from it. What I am saying (and what I have learned from my own search for knowledge) is that everyone appears to suffer a different level and different type of symptom.

Sure, nearly all Colloid Cyst sufferers will experience mood swings, dizziness, full headedness and sleep disruption but it does appear that the impact will vary from one case to another.

This is my experience and I hope it helps.