DBS: The Process So far
After a conversation earlier with a friend on facebook, I figured that I should try and write a basic summary of the processes I have been through so far leading up to the Deep Brain Stimulation operation. Only a month to go now! I am so nervous – just trying not to think about it!
I am going to warn now – this is going to be a long post. You have been warned!! So if you wish to read on, I guess this is a good place to start, with a little pic that gives a close approximation of the party that will be going on inside my skull in a month’s time:
Part 1 – Requesting involvement.
Firstly, a little background. I was originally offered to be entered in to an earlier trial some years ago. At the time my tics were bad and did genuinely interfere with my life but I declined and swore that I would never take that step as the thought of someone poking around inside my brain – given how little we actually know about the human brain – scared me half to death. However, my bad patch back a few years ago changed my perceptions a little. Although things had been bad before, they had never been that bad. I damaged my knees (and as a result haven’t been able to continue doing things I love like skateboarding and cycling), lost my job and lost almost all of my self confidence. I had some of the most emotionally exhausting and, frankly, devastating experiences during that period. So during my visit at the time to my specialist in Birmingham I asked if the offer was still possibly open. It was, and I was recommended to leave it until my next appointment to go away and have a think about it. A little while before that appointment things started to go downhill again, so after months of indecision I took the plunge and asked for the referral. That was the first step.
Part 2 – My first visit to London!
This was my first visit to London. This was right in the middle of the waxing part of this current episode and was possibly one of the most stressful journeys I have taken in my life. It was around this time that I had started to experience the “axial drops”, a tic where I drive my knees into the ground, and the hyper extension, the tic which causes me to arch backwards violently. This was causing me to hurt myself constantly on a normal day – it was only a couple of weeks after this visit that things reached their peak and I was admitted to hospital. The journey was genuinely horrific, I took it with one of my best friends and my sister for help and support. I was nervous (which never helps), we had to travel to Reading by car and then board a train. I repeatedly hit my head on the floor of the train station in Reading and by this point my tics were already hitting quite hard from the nerves. We then had to take the underground during rush hour which was something I have sworn never to repeat. Thankfully the staff in the station were incredibly helpful – I even sent a message to the station asking for them to be commended in some way! They identified that I was in a lot of distress and closed off half of a stairwell to help us out of the station and even told us what bus routes to take above ground to avoid some of the situations that would set me off further. We finally arrived at the hospital and the waiting began (it’s always waiting rooms that get me that little bit extra!).
That appointment turned out to be fairly simple in itself. It involved talking about the operation and being given a basic overview, answering a lot of questions and also being told that they wanted me in the trial but they weren’t sure if they could find funding and that they may not have been able to take me for that reason. Nevertheless they told me that they were going to try – and one of the first steps was that they wanted me to fill in some tests, answer some more questions and also be videoed ticcing by a member of their team (an experience not unfamiliar to me as I often opt to participate in research and helping students during my normal specialist visits).
I walked/stumbled out of that appointment with mixed feelings, which quickly became very blank feelings and a jumble of mixed up memories for an hour or two after, as a combination of dehydration, exhaustion and the fact that I hadn’t actually eaten for the whole day while having an extended attack of that magnitude hit me and I passed out. They wanted to arrange transport home for me but I refused (I am learning to deal with the stupid pride a bit now) and insisted that I got there myself, I was going to get home myself. So they checked me for concussion and allowed me to leave. Strangely one of my few clear memories from the journey home is sitting outside a Tesco Metro screaming and twitching away with my sister while my friend went to fetch me food and drink to stop me from passing out again!
Part 3 – MRI Scan
I had to go for an MRI scan as part of the preliminary process to (hopefully) enter into the trial. Apparently the current method involved in the DBS operation is MRI guided. I don’t even pretend to know exactly what this means – and I don’t think this scan was directly related to the operation. I get the feeling that it was more to rule out other causes and generally check my brain. If you ask my family they will tell you that they were checking that I actually have a brain, but that’s my family for you!
This actually happened when I was an inpatient in the hospital in Bath (I have nothing but praise for the Neurology ward team in the RUH). I was packed off at 5am in a Patient Transport Ambulance – well, I say that, the Ambulance broke down before we even left the hospital and we had to wait for another one to arrive to replace it. But anyway, come a time closer to 6am and we were off.
That journey was a lot smoother than the previous one, I was still quite twitchy but we got to the hospital only a little bit later than intended and I was transferred to the bed in no time at all. The part of this that I was very much gutted about is that I have always wanted to experience the inside of an MRI machine – I know, I know, it sounds really stupid – and I had to have this scan under a General Anaesthetic. I did manage to splash blood about when they put the cannula in my hand (they didn’t screw the cap on quickly enough and I wasn’t able to suppress a tic) and I was in there for quite some time! The next day I found some burns on my chest where the skin was peeling away – this is apparently not uncommon and I gather that it is caused by some of the monitoring equipment that they use on you inside the machine.
Part 4 – The Good News!
I won’t lie. I went to this appointment resigned to the fact that it was already very little time until they had said they wanted to commence the trial and that I was going to be told that the money wasn’t there and that I wouldn’t be offered a place. I was completely convinced. I usually see the bright side and keep hopeful, but things really had not been going my way for quite a while and I was beginning to get quite down.
The first good sign was the fact that I was meeting a fairly large (by my standard of medical meetings, at least) group of people – one of which was the neurosurgeon. They gave me a talk about the potential that it could be ineffective and checked that I understood that this is a trial and not an established procedure and then to my surprise they offered me the surgery. No beating around the bush, they just put it right out there (after I had repeatedly apologised for ticcing and kicking/almost kicking the lead doctor in the room). On the spot they gave me a preliminary date (the 8th of April) and there it was – suddenly all it had become very real. If I could have got up from the wheelchair without immediately injuring myself I would have jumped for joy. But I’d like to think that for that little moment my tics were doing it for me – I was involuntarily ticcing with joy! I can honestly say I never expected to be so happy to hear that people would be drilling into my skull and poking my brain with bits of metal!
The trial is double blind. This means that after it is switched on there will be a six month period, split into two smaller periods of three months. During one, the device will be switched on, during the other it will be switched off. Neither myself or the lady testing and interviewing me will know whether it is on or off – the only people who will are going to have no contact with either of us on the matter. So once the meeting was over I was wheeled off to chat to the lady in a room about this, have a little Q&A moment and also to explain the testing regimen that will come after the operation.
Part 5 – The Most Recent Visit
I was told during the previous appointment that I would need to check in with their team’s neuro-psychiatrist. Even though I already see one (the awesome Dr Cavanna in Birmingham) I can understand why – they obviously need someone on their team to give me a psychiatric once over – or something like that. Unfortunately there was a mix up with Patient Transport, which has been taken over by Arriva. Even though I told them that two hours was not enough time to get from here to London, they didn’t listen. So when we left here at 12 for my appointment at 2, and arrived at nearly 4 I wasn’t remotely surprised. This did mean that my appointment had to be cut short. I am in the process of making a formal complaint about that incident though, as I even informed their call centre that there was going to be an issue and was essentially told I was wrong (even though I have made this journey a few times now).
Still it felt productive. From my experience it was a fairly standard psychiatry type appointment. We went over a lot of old ground, discussed previous mental health history, past and current issues. The lady did identify (quite rightly, to be fair) that my OCD is still quite a problem. I suffer more from the obsessional side – although obviously there are certain compulsions that I must perform to quell some of the obsessions. She did tell me that she genuinely hoped that they can help me – which seemed like a really nice thing to say – and said that she would like to look at tackling the OCD after the operation depending on the result. I politely declined for the most part. This may seem pig-headed but I have made a lot of progress dealing with my OCD and it’s symptoms myself and although I would be willing to accept a little help for some of it I have gained a great sense of achievement in being winning little battles against it off of my own bat. I may change my mind closer to the time on that one though.
And there we have it. The story to date! There is more to come, I believe that I am due at least one more visit to London before the operation, but I don’t think that there is much more to go now until the operation itself. I will try and remember to write about the next visit when it happens – instead of another mammoth post like this one!
I have written in excess two thousand words and if you have made it this far… I really hope it was some sort of help or at least vaguely interesting. I try very hard to stay on topic but I am terrible at it, no word mincing there. I have had a particularly bad evening and have taken a lot of Diazepam in order to reach a calm point and for all I know I may have just filled an entire post with utter drivel. If this is a the case I apologise!
If you have any questions or would like to point out anything I missed or got wrong, please feel free to comment. I honestly intend this blog to be useful to people in some way! 🙂