Some people affected by Parkinson’s undergo deep brain stimulation surgery (DBS). Here, Christian shares his story of having DBS in his 30s.
“It got to the point where I just couldn’t tolerate the medication,” explains Christian. “I’d tried so many different drugs, from levodopa to apomorphine, but the side effects were ruining my life.
“The meds helped control my tremor, but at what cost? I had involuntary movements, I was feeling sick, hallucinating. I developed addictions. I’d always liked placing a football bet but it became ridiculous. I had to ban myself from online gambling. It didn’t seem like real money when it was just a number on a screen – it wasn’t like you were pulling a tenner out of your pocket.”
For a while Christian, who lives in Stoke-on-Trent with his wife Samantha and 3 children, stopped taking medication altogether, feeling that the side effects outweighed the benefits.
“People would argue, saying that I needed to take it to make me better. I used to say to them, ‘Well you take 1. You take a tablet and tell me how well you function in work, all day, without feeling really dizzy or wanting to throw up.’”
With an uncontrollable tremor and becoming increasingly frustrated, Christian went to his consultant to discuss having the DBS surgery he’d read about. At the time Christian was working in a factory, after having to give up his job in the building trade where he had worked fitting offices, including working on the Olympic media park in 2012. Despite support from his colleagues, the manual labour required for the job had become too difficult, what with worsening symptoms and the debilitating side effects of medication.
I was told that I wasn’t eligible for the surgery because I’d only had Parkinson’s for 3 years. I just remember thinking it was ridiculous. It was tough to hear.
His consultant referred him to the Salford Royal Hospital for a DBS assessment, with Christian expecting it to be a straightforward process.
“Firstly the doctor ignored my original notes and wanted to do his own report. And I was then told that I wasn’t eligible for the surgery because I’d only had Parkinson’s for 3 years. I just remember thinking it was ridiculous. It was tough to hear.”
Christian ploughed on, taking a minimal amount of the medication Madopar, to counteract really bad days, but to avoid unwanted side effects.
“The doses I was on weren’t really doing anything though, so it was pointless in a way,” he adds.
As a last ditch attempt, Christian got in touch with the hospital again to plead his case. 8 months later they agreed to carry out the surgery.
“Once they told me that I could have it, that’s when I started to panic! But actually the staff were brilliant and put me at ease. They talked me through the procedure and what the risks were, and I had an MRI scan so that the surgeon could map out my brain. I was just keen to get it done at this stage as I wasn’t functioning very well at all.”
In October 2017 Christian underwent the DBS operation where small electrodes were implanted into his brain and connected to a pulse generator placed under his skin. This was carried out under general anaesthetic.
The procedure went smoothly, and after 3 days Christian was discharged from hospital. “Obviously I felt a bit battered and bruised and ragged around. There was a slight discomfort in my chest where the battery had been fitted. But overall I felt OK – I didn’t experience any headaches and my head healed really well.
“A few days later a nurse came to my house to take the stitches out. All in all, considering what I’d just had done and the fact that I had wires running down from my brain into my chest, I thought they’d done a good job!”
And how did the surgery impact his symptoms?
“I had to wait 10 weeks for the brain to ‘settle’ before they switched it on. I felt pins and needles down my body. But it was amazing. I went from 40% functionality to 90% with one flick of a switch.
“My tremor – which at times could have been violently strong, to the point where I couldn’t text or write my name – instantly improved. My posture was better too. My friends and family noticed the difference straight away.”
Since the operation, Christian has been able to go back to work at his friend’s building company, in a more manageable role. He has to attend regular appointments to make sure his surgery hasn’t affected his memory or psychological state, but is so far doing well.
He adds: “DBS hasn’t been an instant cure. I still have a tremor, but it’s much milder now. The next steps will be fine tuning it.
“My first thought when I was diagnosed with Parkinson’s was, ‘Is this going to kill me?’ But I try to take things in my stride. I have my dark days, but there’s no point getting down or hung up on life when there’s still a long way to go.”