A Whole Day of Testing…
This feels really odd! I’m writing a blog entry about the DBS that nobody will read for close to a year. There are good reasons for this – I have been asked to keep things low key for a few months by the people doing the surgery. This may seem strange but they gave me good justification for this. I hope you can understand! 🙂
Today was the day of my Pre-Op Assessment and the first battery of trial testing. Really long day! So much stuff!
It started, as is becoming customary, with an Arriva Patient Transport screwup. I was told to be ready between 6-7am (to arrive in London at 9.30 – they would have needed to pick me up for dot on 6, really). When I phoned the call centre at around 7am I was told that the crew actually wasn’t on duty yet and I wouldn’t be picked up before 8. Then not long after I got off of the phone a crew arrived from a different company that had been sent by Arriva. You would think that they would know that they had commissioned another company to send a crew out to get me – but no! We arrived an hour and a bit late for my appointment, which by Arriva standards actually is close to being on time!
The screwups didn’t stop there either. They completely neglected to make a note of the fact that I had not only a 9.30 appointment, but also my pre-op at 3pm. So as a result the other company recalled their crew in the middle of my pre-op, leaving me in the hospital waiting for a porter to take me back to the other part of the hospital to continue tests. In the end I was actually stuck there until approaching 9pm waiting for a replacement crew to arrive. So as I said, the customary run of the mill Arriva cock-ups.
Anyway, on to the day! I’ll start in a weird order – the pre-op was the shortest but possibly most strenuous part. I was in a public area of the hospital, in a waiting room and I was asked not to take Diazepam unless there was absolutely no option as we hadn’t finished the testing (because of the lateness) – but more on the testing in a minute. I had to have my arm held down to take blood and have my usual bruise from tensing and straining against the bit of metal stealing my precious blood! But at least they were good enough to hold me still – unlike one time before in another hospital where a HCA missed one vein, went through another and finally hit one before I ticced and the needle came out… those were fun times. For a given quantity of fun. (Psst the quantity is zero!) Other than that it was your standard pre-op, I had swabs unceremoniously stuffed in my nose, armpits, groin and eyeballs (that last one was a joke) and answered a questionnaire which felt an hour long.
On to the testing! The testing was insane! They have to establish a “baseline” for a lot of stuff pre-DBS. It’s largely to work out side effects and also to actually check if it’s working or not! I’m not going to go into fine detail but there were tests for everything: memory, IQ, vocabulary etc and a lot of questions both psychological and otherwise. That part took hours! They also took a video of me ticcing, which I found incredibly awkward. I couldn’t even bring myself to look at the camera, I just kept my eyes closed through the entire experience – it felt as bad as having somebody staring at me! I think that knowing I was on video set me off even more as well. Not to mention that the video part was done after I came back from the pre-op (when I was still a complete state).
Thankfully when the video was done I was allowed to take some Diazepam to help me calm down – it was such a relief. I’m writing this two days later and I still ache from the experience!
I will have to repeat the same battery of tests several times for the trial apparently – from what I gather I don’t think that there would be quite as much testing if this wasn’t a trial. They have to cover all bases as they are obviously having to interpret all of the data in order the find the proof that it works.
One thing I will say is that so far I have nothing but praise for the team working with me – they have been up front and honest with everything. Nothing has been sugar coated – including the risks and I don’t feel that I have been misled about the potential outcomes. As with any treatment, people react differently – it may do absolutely nothing, it may work wonders. The “aim” if you will is to hit a middle ground, so I can go back to being able to work. That would be the ideal outcome as they have been very clear that it is extremely unlikely to do the extreme opposite of nothing. But I’ll settle for that, being able to do normal stuff permanently instead of intermittently would be just fine for me right now!!
Well I feel like I’ve filled up enough post rambling. Still weirding me out that nobody will read this for months but oh well… posting away…