Excited. Nervous. Scared. Those feelings you get when you’re waiting for something which has the potential to either crush your hopes or fulfill them.
That’s how I felt this week after the wheels were finally set in motion for me to start the assessment process to see if I am eligible for Deep Brain Stimulation (DBS) surgery.
It’s not a cure, as the surgeon emphasised to me and there are risks (including a stroke, paralysis or even death). But he was quick to add the risks are small, but not zero. Unfortunately for me and all the other millions of people with Parkinson’s worldwide, there is currently no cure for Parkinson’s, and being a degenerative condition, it will get worse with time.
However, having exhausted pretty much all the medication options available, seven years into my Parkinson’s diagnosis, what DBS surgery could do for me – if successful – is help to control some of my symptoms better, and allow me to reduce my medications, thus removing the side effects from the equation (Goodbye troublesome dyskinesia) and therefore give me a much better quality of life.
With that prospect in mind, and having given it a lot of thought (as explained in my last blog), I had already made up my mind. Although I did wince as my potential surgeon described the process* which includes drilling two holes in my head while I am awake – apparently it doesn’t hurt but you can hear it. Also the very thought of having a device with a rechargeable battery implanted inside me and charging it myself every couple of weeks seems bizarre to say the least. But none of this was enough to stop me from saying yes, when asked if I wanted to go ahead.
There’s a three part assessment process to determine whether or not I am eligible for this potentially life-changing surgery. One part is something called the Levodopa challenge where I will be asked to complete a series of tasks completely un-medicated (I’ve been taking medication every day for seven years and am now on five types of Parkinson’s medication, so that will be interesting), and then I’ll be given some medication and asked to repeat the tasks. And I have to show a 70% improvement to be eligible for DBS.
The other two parts of the assessment are cognitive tests and an MRI scan.
In my case, the first thing to be organised was the MRI scan which was organised there and then. And so I left the hospital with an appointment in just two days time and the knowledge that I would get the results straight after the scan! If the scan showed I wasn’t eligible, there would be no need for any further tests.
It all happened so fast! I spent the next day and a half with my head all over the place. I felt nervous, excited and scared all at the same time. Part of me was full of hope and excitement but I was also scared in case I was told I wasn’t eligible for DBS. I couldn’t help wondering how I would feel if that was the case. Waiting for that pivotal moment, I kept wondering which way it would go. Would my DBS journey be over when it had barely even started?
I didn’t have to wait long. Two days later, I returned to the hospital for my MRI scan. I’ve had many MRI scans in the past, so I knew what to expect. I learned from previous experience to keep my eyes closed the whole time – no matter how tempting it was to open them – otherwise it can make you feel claustrophobic as you are lying in a fairly low tunnel. I tried to ignore the loud drilling sounds and instead tried to sing songs in my head. It certainly felt like a long 45 minutes.
Finally, it was over! And then the moment of truth… as the surgeon showed me the scan of my brain and where the wires would be inserted, and he confirmed what I had been hoping for! I had passed the first test! I can’t even begin to explain how relieved I felt at that moment. And how great it was to get some good news in these challenging times!
So I’ve passed the first part of the assessment process. One down, two to go, and then hopefully DBS. Which both terrifies me and excites me in equal measures. But… one step at a time. And for now, I’m focusing on how grateful I am to have been able to take that first step on my DBS journey. I don’t know how long it will last, what pace I will travel at or even where it will take me. But, with that first step comes hope…
To be continued…
*Please be aware that the DBS process is carried out slightly differently at each surgical centre.
Please bear in mind that this is my personal experience of the DBS assessment process. You can find out more about Deep Brain Stimulation on the Parkinson’s UK website.