The Healing Process, The Switch on, The screening, The trial!
Firstly I apologise for this all being in one post and being so late (I was switched on several weeks ago now). The delay is due to a combination of factors… I will put my hands up and admit to procrastinating, but with good(ish) reason. As I will detail below, due to the nature of the trial I am trying very hard not to obsess about the current status of things and I felt that writing posts might exacerbate the obsessions by making me think about it! The other factors were things like us moving (finally in a ground floor flat, so I am able to venture outside alone) and other generally stressful things – which I know aren’t good excuses but there you are. At least I admit that they are excuses!
Secondly anything written below is from my point of view only – if I get anything wrong please bear in mind that I am a patient, not a neurologist or anything of that sort!
Ok so with those out of the way, let’s get on with the post.
The Healing Process
This felt long and drawn out, although looking back it was only a few months for fairly major surgery. Still getting some pain under my scalp now (I’m told that’s probably from the wires) and often get stinging/aching in my left pec – but they have said that this could take a while to heal or might semi-permanently give me a small amount of trouble – to be fair they did insert a control device into a pouch of muscle! The external chest incision was actually the fastest healing one – it knitted together in a matter of a month or so, if not less. I was very careful at first as I was worried about putting too much stress on to it with my wheelchair, but aside from the previously mentioned pain that is all fine now.
When I was first discharged from hospital I had to wear a head-bandage for a week or two, my scalp was covered with these special waterproof plaster-things underneath it and my chest was also covered. You can see the amazingly stylish head covering in one of my previous blog posts. I then went in to have the stitches removed – at that point massive and I mean massive scabs had formed over the wounds and I had to resist the almost overpowering urge not to pick them. Note I said almost – I only had one or two incidents (which I immediately contacted the hospital about!) – mostly waking up scratching my head which, in fairness, I couldn’t do much about!
I had some setbacks – namely the front left scar was set back by a few knocks where I took the scab off – I’m tempted to post a picture I took of what came off, but it looked gross and sort of like some sort of dead caterpillar covered in hair – so I think we’ll leave that. Also the back scar healed incredibly slowly! I think that is because I sleep on it – it’s still a tiny bit pinker than the front now (I can see it now I’ve had a haircut!) but actually healed by the looks of things. No scabs etc, just nice clean scar tissue.
To be honest the hardest part – for both Hollie and myself – was my obsessions of contamination during the latter parts of the process. At first it was entirely justified I had to sleep on consistently clean bedding, not touched by anybody but me, wasn’t allowed to touch the wounds at all, had to be completely isolated from her hamster etc. But I couldn’t let go of it – even now I’m struggling. I still won’t let people sit on my bedding because I’m afraid that I’ll knock or scratch on of the cuts in my sleep and some contaminant from a person (bacteria etc) will make its evil way into my scalp and onward to my brain. Still won’t let my wife’s hamster near me (although I’m not a huge fan of hamsters anyway, they are cute but it stops there for me). Stupid bloody OCD.
Switching it on/Screening process
So after waiting six weeks from the operation date I was called back to the hospital for a five day stay to have the device switched on. The first stage of the process is a screening process. In order for this to make sense you have to understand that the DBS electrodes each have four stimulation points, spaced a small distance apart. The current can be passed through one (or multiple if I remember rightly) of these points at varying voltages to produce the desired effect.
To be frank (although I’m not frank, I’m Alex… cue forced laughter, terrible joke) I did not realise how terrified I was of the switching on! I guess in my head the entire process conjured up images of some cackling mad Frankenstein-like scientist throwing a huge mechanical switch – when in truth it is quite simply a case of a polite and friendly doctor holding a little radio/telemetry device over the control unit and putting some test settings into a handheld device.
The idea of the screening is to try each contact (and combinations of) at fairly high voltages to gauge initial effect. One of the contacts did not have a particularly positive effect on me, as soon as the current was switched on through it I had a feeling of terror – and I mean pit of your stomach, gut clenching terror – and the sudden overwhelming need to go to the toilet. It was on my way back from the toilet that I realised that my entire body was shaking quite violently and that the feeling was getting worse. The panic feeling effect was later reproduced when I was placed on this setting without knowing but not to the same degree, so personally I think that the actual terror/shaking etc was compounded by how scared I was by the prospect of it all being switched on.
Some of the other settings, however, showed some promise. So over the next few days they tried a few different settings on the device (to varying degrees of success). The best one was sheer bliss – I was so much calmer. I’m not saying I was tic free, but I was able to take my wheelchair from the hospital and go to both the area outside Russel Square station (full of tourists, busy – usually a huge trigger point for me) and also on one particular day to Russel Square park itself! The tics were nowhere near as violent as usual, and when inside they were even better. I was even able to pour a drink of water for myself from a jug making considerably less mess than I usually would have. The idea of all this being that once the trial is over this will give them a guideline on which settings could work and could be fine-tuned/optimised to give me the maximum benefit.
That, unfortunately brings us to the next part which I am currently finding incredibly difficult…
This is the part of the process that is probably going to drive me mad. No I am being melodramatic there, my insanity has already been pretty much ground down into a fine powder in the last year or so by the Tourette’s so no more madness for me. It is however a huge problem when it comes to the OCD. I am determined to stay in the trial though – for (hopeful) good of others in my situation! I really, really hope that I can contribute in my own way to other people being able to get this treatment. Especially considering the massive impact that the initial tuning of the device seemed to have on my tics!
Anybody with OCD will probably be able to immediately identify the problem for me with the trial:
I have to spend three months on one state, and then three months in the opposite state. (eg. Three months on, three months off or three months off and three months on) It is also double blind – which means neither the Doctor that assesses me, or myself knows whether I am on or off.
Since leaving the hospital I have had both ends of the stick. I am aware that things were naturally beginning to wane a little anyway before the switching on (at least I think they were, it was hard to tell with the initial calming effects of the surgery). I have been both worse (considerably worse) than I have been since the operation, and then in the last couple of days considerably calmer. The problem, as a lot of people with Tourette’s can probably vouch, is that it naturally waxes and wanes constantly anyway.
So I am stuck at the moment trying to distract myself to stop myself obsessing stupidly that:
a) It is on and I am making myself worse by thinking about it!
b) It is off, and I am making myself worse by thinking about it!
c) I am somehow going to affect the results of the trial by obsessing over it and ruin it for everybody! (even though they have told me that OCD etc is accounted for)
d) Insert other frustrating, stupid obsessive behaviour here!
From now on I will try to post when things happen instead of procrastinating like a moron. Although you sorta have to admit, I am spectacularly good at it.