A Very Merry Christmas

Even after a tumour has been completely removed, there’s always a chance that it can return.  It’s been more than a year since my last MRI, so The Professor thought it was time to give me a thorough head-check, to make sure mine wasn’t trying to make a comeback. 

I spent most of today at the hospital, getting MRI scans and shunt adjustments: a long, laborious and slightly depressing process.  

The GREAT news is I’m in the clear! There’s no sign of Timmy the tumour (yes he had a name) and I’m told everything looks stable.  I also feel pretty good, so now I only need to go back for scans once every two years (hurray) – a great way to start my Christmas. 

Can someone please remind me go check again in December 2013?

Blame it on the Brain

This is my first “proper” blog entry for nearly 15 months, which means I’ve enjoyed a year and 3 months of relative normality (yippee) - or as one of my clients commented after my first surgery, “Tak, you’re back to abnormal”.

I’m writing this entry today, not because anything’s wrong but just to update on some results I got this afternoon. 

A couple of months ago, I had my 18-month psychological evaluation.  This was my 3^rd such assessment: I had one before my first surgery, another 6 months after and then finally this one 18 months later.  

My first few rounds of surgery had caused my IQ to drop significantly - from being in the top 98^th percentile (pretty damn clever) to the 84^th (merely “above average”). What’s more, my memory tested terribly – I was in the bottom 30^th percentile, which officially puts me in the “impaired” bracket.

12 months on, and my IQ has edged back up.  I’m now back in the top 94-95^th percentile and my memory has improved, from “impaired” to just “below average”.  This is all playing out as my surgeon had predicted.  There was an immediate drop because of all the poking around in my head, but it’s gradually improved over time as the brain heals.  So, hopefully, in a few more months I might be back to my old self fully. 

For now, I still have to write everything down otherwise I will almost certainly forget.  My visual memory is particularly bad, so I continue to forget people’s faces with alarming regularity.  The number of times I’ve introduced myself to someone, only for them to say, “yes Tak, we’ve met 10 times before already” – really makes me cringe. 

So, if you are one of those people who I’ve ran into and ignored, who’s name I’ve forgotten, or who I’ve introduced myself to without realising that we’ve already met SO many times before - I offer you my sincere apologies.  I must come off as being incredibly rude and I really don’t mean to be.  Please don’t take it personally.  Like Milli Vanilli said, “blame it on the brain” (or something like that).

The Gift That Keeps On Giving

No updates for a while now (that's a good thing).

I did, however, just stumble across a TED Talk that really struck a chord with me. Take a look at it HERE.

I felt everything that she talks about :)

Who Moved My Shunt?

Yesterday afternoon as I was heading out of the office for lunch, I suddenly lost all sensation in my left hand. I could still move it normally, but i had no feeling in my fingers. It felt detached, like it wasn't really mine. I remember feeling the same in the first few days after my tumour surgery, so I immediately figured that it must be something to do with my brain.

The feeling passed after few hours and everything went back to normal, but to be safe, I went back to the hospital to see a neurosurgeon today. He told me that there were two possible causes:

The first is seizure activity in the brain, but he thought this unlikely because it took a few hours for my hand to return to normal (seizure symptoms usually come and go very quicky).

The other possibility was that it could be a shunt-related issue, so he proceeded to check my shunt settings there and then.

As it turned out, the settings had changed without me knowing.

Without wanting to bore you with the technical details, my shunt has programmable pressure settings of 0 to 2.5. My setting is meant to be 2.5 But somehow it had reset itself to 1.5 causing over-drainage. This in turn caused my brain to contract and that's what probably caused the weirdness in my hand.

The only thing that can change shunt settings are magnets. I don't recall going near any strong magnets recently, but who knows? Maybe I should stop sticking my head in the freezer.

Anyway, no big deal - he corrected it on the spot and sent me home. Now I feel completely normal again. I just have to stay vigilant and watch out for symptoms that might suggest a problem.

So, all back to normal for now :)

Not Quite As Clever As I Used To Be...

A few weeks ago, I had my post-operative psychological assessment. The format was the identical to the one I took months ago, before my first surgery. I was tested on a whole host of different areas, including memory, intelligence and mood.

I got the results back last week and it appears that all the drilling into my brain has had a lasting effect. My memory remains terrible - I am in the bottom 30th percentile, but it was already bad before the surgery (likely the result of years of tumour damage). The biggest change was actually in my intelligence - my "non-verbal intelligence" to be precise - problem solving - maths, logic etc. Before surgery, I scored in the top 98th+ percentile. Now, I've dropped right down to the 84th percentile! I'm told that it can creep back up over time as the brain repairs itself and find new neural pathways to do the tasks that used to come so easily to me.

I have to say that I haven't really noticed much difference which suggests that I never really used my brain that much anyway. I have to redo the tests in a year's time to track progress. Until then, forgive me if I look a bit confused from time to time, I'm not quite as clever as I used to be.

My "verbal intelligence" - the ability to express arguments, rationalise and explain abstract concepts has remained unaffected, which is just as well because that's the bit that I need more for work and day to day living. Luckily I'm not a nuclear physicist or a calculus teacher!

My Brain Shrank!

Today I was back at the hospital for yet another CT scan. This time, the scan showed that the swelling in my brain had completely gone. But, to my surprise, there was another problem. The ventricle space had reduced in size, but it had actually shrunk so much that you almost couldn’t see it! This was an indication that the brain fluid was now draining out of my brain too quickly, causing that part of my brain to contract - which can be just as dangerous as swelling.

The good news is that the new shunt they gave me in my last surgery is a more advanced, programmable version. This means it’s possible to adjust its flow settings using an external handheld device. The doc simply placed a plastic gadget against my head, turned a few dials and hey presto, it was done. No knives, no surgery, no pain.

Without a programmable shunt, making this adjustment would have meant going through yet another surgery and lengthy hospital stay. As it happens, the procedure took about 10 minutes and was completely painless.

This is the shunt valve. It sits under my scalp, and goes into my head just behind my right ear. Ask me nicely when you next see me and I'll let you feel it.

One thing I now need to be mindful of is that the device is sensitive to magnetic fields. This means I now have to be careful near strong magnets, such those in some types of headphones and scanners. MRI scans are now out of the question because they emit strong magnetic fields that could reset my shunt settings without me knowing.

But hey, it's a minor inconvenience compared to the prospect of having yet another surgery.

Brain Surgery No. 4

The surgery happened at 8am on wednesday morning. The routine of putting on an open-back gown, being wheeled down the corridors to the operating theatre, seeing the big bright surgical lights above me and being given the injection that would send me into a deep comfortable sleep, was repeated once again.

The day before, Professor Poon and I had agreed that he would do a shunt revision, i.e. the less invasive, lower risk option. I asked him what the main risk of the other option was and he said it was brain haemorrhage!! The only brain haemorrhage I've ever seen was in a shot glass and even that was enough to put me off, so shunt revision it was.

He had expected my old shunt to have been blocked at the brain end, but once the surgery was underway, it became evident that it was actually the other end that was blocked (i.e. the part that goes into my abdomen). So he ended up having to pull out the entire tube, all the way from my brain to my gut and replace it with a new one.

When I woke up, I had sharp abdominal pains from the surgery, so they gave me a morphine injection to cheer me up. I've only ever seen people get morphine in war movies, so had no idea what to expect. The best way I can describe it is that it was like being slowly enveloped by a warm, fuzzy blanket, that leaves you feeling really snug and mellow. It certainly took the pain away and more :)

The best part is that I can discharge from hospital tomorrow. As nice as the people here are, there's really no place like home.