The Matrix Reloaded

Over the last week or two, I started getting some mild but odd symptoms again. Occasional headaches, momentary disorientation, tiredness etc. None of it was too hard to deal with and it tended to pass after a few minutes, but last Friday I decided to go see Professor Poon again, just to be safe.

He sent me for another CT scan. The scan showed that one of the ventricles in my brain had begun to swell up again. I went in for a follow-up consultation this morning and, To save writing time, I’m going to be lazy and just cut & paste the update e-mail that I wrote to my family earlier today. Here it is:

Hello all,

It's great to hear that dad seems to be making such a good recovery. Long may it continue!

Unfortunately, I have a less positive update on my situation. I went in to see Professor Poon this morning. Originally I thought I was going in for a CT scan to check the progress on the swelling in my brain. Instead, he sent me for an EEG to monitor the electrical activity in my brain. He explained that some of the more recent symptoms that I've been feeling (slight disorientation and headaches) could be the result of mild seizure activity and the EEG would show whether this was the case or not.

Me having my EEG done this morning. They wouldn't let me keep the hat :(

The good news is that the EEG was normal, so it's not seizure related. Which means it's most likely to do with the physical pressure of the swelling. The bad news is that; in his opinion, the chances of the swelling correcting itself without intervention are slim. Therefore, there is more than 80% likelihood that I will need to have a fourth surgery to fix it.

The swelling is probably caused by the drainage hole (that he made in my brain during the last surgery), closing up and therefore not allowing the brain fluid to drain away.

There are two possible surgical solutions:

1. Shunt revision: Unblock or replace the shunt that's already in my head

2. Repeat the last surgery: (fenestration) - but this time cut away more brain tissue to make the hole bigger to minimise the chances of it closing up again.

Option 1 is the simpler and lower risk option. It's a 1.5 hour procedure and not too invasive. BUT his original concern remains, which is, because the shunt blocked so quickly the first time it may block again, which would mean yet another surgery to fix it. His preference therefore is for option 2. It's harder work, more invasive and may be a slightly tougher recovery for me. But it is more likely to be a permanent solution (although there are never any guarantees on this, either way, (as has just been demonstrated).

Next steps are, tomorrow at 9am I will go in for a CT scan. If, by some miracle, the swelling has gone down by itself, then I may not need any surgery. But in the more likely scenario that it is still there or has gotten worse, then I will be admitted immediately for surgery. They have already booked the operating theatre for me this Wednesday.

Anyway, I am feeling good right now, no headaches or disorientation, so who knows? But I will give you an update tomorrow after my CT scan and discussion with Professor Poon.

Thanks for the prayers and support. I think we have the best family support group in the world :)

And don't worry, I feel good and positive. If dad can get through his issues then so can I!!!

So... my dear Blog followers, as it stands, I am going back into hospital tomorrow, and will be prepared to undergo my fourth brain surgery this Wednesday. They have an operating theatre booked for me already, it’s just a matter of which kind of surgery they will be doing on the day, which will be decided tomorrow after my scan.

I’d be lying if I said I didn’t feel nervous. My feelings before each of my surgeries have ranged from “peace and tranquility” to "fear and panic". Right now, I am somewhere in between but leaning towards the peace & tranquility end of the spectrum. As sad as it sounds, I feel like I’ve been through this so many times now, that I’m kind of used to it. At least the fear of the unknown is no longer there. If anything, I’m just frustrated that I have to go through it again. I really hope this will be the last one. Wish me luck!!!

Like Son, Like Father.

I started this blog to keep people updated about my head issues, but please indulge me a small digression.

Yesterday, My dad had to have emergency heart surgery. He had been complaining of chest pains for a while and was finally admitted to Harefield hospital's specialist heart unit for open-heart surgery. My dad is 80 years old and has been a heavy smoker all his life. He also doesn't have the healthiest of eating habits and it all caught up with him in the last few weeks.

The surgeon had to remove a damaged aortic valve from his heart and replace it with a 'bovine valve' - that is, a valve that's been reconstructed from parts of a cow! (I'm still amazed at this fact). I was worried for him because of his age and other underlying health issues, but the surgery went smoothly and he is now recovering in hospital (accompanied by a large Lee-family entourage).

Apparently the surgeon said that without the surgery, he may only have lived for a few more days.

I said to someone yesterday that this has been a bad year for the Lee family's health, but in restrospect, I can also say that it's been an amazingly good year as well. I caught my tumour before it had done any serious damage, my hydrocephalus was caught just in time before I went into coma, and my dad's surgery was completed just in time to save his life.

Indeed, we are not an unlucky family at all, we are a truly blessed one.

How Great To Be Normal

Yesterday I went back to the hospital for my fifteen millionth scan (ok, maybe I'm exaggerating just a tiny bit). The good news is that things are looking stable. The part of my brain that had swollen up looks like it's in the process of contracting. It's still not down to normal size yet, but it's a lot better than it was was a few weeks ago, before my last surgery. And more importantly, I feel good. No headaches, no seizures, no disorientation and no weirdness in general.

If things stay on track, I should be able to go back to work and normality right after Chinese New Year (in a few weeks time). After the last few of months of medical madness, I am REALLY looking forward to a return to normality. I could never have guessed that ordinary, regular, day to day living could have such great appeal. I guess it's one of those things that you just don't appreciate until it's taken away from you.

Plan B

If there’s one thing I‘ve learned about treating complex medical conditions, it’s that you can’t take anything for granted. This has been true of my treatment, right up to my most recent, unscheduled surgery on New Years Eve.

The shunt which was installed in my head just a few weeks prior, had blocked, causing a flare-up of the hydrocephalus that had given me all those weird problems back in November.

Blockages happen when the random bits of junk floating around in the brain, clog up the drainage holes in the shunt. The standard fix for this is a “shunt revision” – where they go back in to replace or unblock the shunt. But in my case the blockage had happened so quickly (I guess I have more junk in my brain than most) that Prof. Poon was concerned a simple revision would not be the best long-term solution. So, to minimise the chances of having to do multiple corrective surgeries in the future, he suggested another approach called “Fenestration”.

Fenestration literally means “to make windows”. In this context, the “window” was to be a hole in the wall of the swollen ventricle in my brain. This hole would provide an outlet for excess fluid to drain off harmlessly into the main brain cavity.

The upside of this approach is that if successful, it sidesteps the need for a shunt altogether, so there’s nothing to get blocked in the future. The downside (and the reason it wasn’t the recommended solution from day one) is that it’s a much more delicate and complicated surgical procedure than installing a shunt. Fenestration is a highly invasive surgery and therefore also higher risk. However, I had trusted the Professor’s judgement and skills on these matters thus far and I wasn’t about to challenge him now, so I just took a big gulp and said “Sure, whatever you say doc”.

Complications

The operation was supposed to take roughly an hour using microsurgery. However, as I understand it, they had some complications mid-operation. They couldn’t punch a large enough hole in the ventricle wall using microsurgery and ended up switching to traditional open surgery to get the job finished. The thought of anything not going according to plan when your (my) head is opened up on a surgery table is quite frightening. But, I’m still here and right now I feel fine. As it happens, the op ended up taking 5 hours instead of one, so I guess I should see that as a bonus (buy 1 get 4 free anyone?).

Recovery

The post-op symptoms were very similar to the ones I felt after my first tumour surgery (see my post: “Seven Days of Pain” on August 31st). Again, I woke up in intensive care on drips with a plastic tube coming out of the back of my head. But the one big difference was that the recovery time was faster this time around. After my first surgery, it took more than a week for the headaches to ease up. This time, I could feel improvements by day 3. Also, the vomiting stopped after a couple of days, which was a huge relief not just to me, but also to the poor nurses cleaning up after me (sorry ladies).

Not Quite The New Year I Was Planning

I spent New Years Eve in the intensive care unit and then my first days of 2010 in HDU (High Dependency Unit) before being allowed back to the regular ward, where I remain now. When I was in HDU, I had splitting headaches, vomiting, diarrhoea and suspected infection. Now my main complaint is boredom and that my friends is a far nicer thing to be complaining about =)

One More Time

At risk of sounding a bit repetitive, I just found out that I have to go back to hospital for another surgery tomorrow morning.

I started getting mild headaches again a few days ago, when I was in the UK and was advised to get it checked out as soon as I came back. So after landing back in HK this afternoon, I went straight to the hospital for another CT scan.

The scan showed another build-up of fluid in my brain, which probably means that the shunt they installed last time is blocked or malfunctioning. Either way, it needs to be re-done and quickly. So it looks like I’ll be spending tomorrow in the operating theatre and my New Year in the recovery ward =( I'm not too worried. By all accounts, it'll be a breeze compared to my two previous surgeries.

Will post more when I have any updates.

Airhead

The scan I did just after my last surgery showed that I had an air bubble trapped inside my brain. It's usually nothing to worry about because it gets absorbed into the bloodstream over time, except that I've been scheduled to fly back to the UK to see my parents this coming Saturday. And you can't fly when you have air trapped in your brain because when the cabin pressure changes, the air expands and your brain goes "pop".

The good news is that today, I had a follow-up scan which shows that the air's completely gone and the pressure inside my head has normalised, which means I'm now ok to fly! Now, I have to go and face the music from my parents for not telling the everything that's been going on ;-)

I'll be gone from this Saturday (Dec 19th) until the 29th. To all my HK peeps - have a great Christmas and see you when I'm back.

xxx

Outta Here

Doc just came around with my scans. My brain's gone back down to normal size, which means I can leave today. Woooo-hoooo!

Hmmm... can someone come pick me up please?