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.