An anonymous person who has suffered with OCD shares their story on how Deep Brain Stimulation (DBS) changed their life.
How did OCD affect you before your surgery?
By 2013 my OCD had been profoundly debilitating for 10 years. I had been living continuously in psychiatric hospitals for 6 years. I had been an inpatient at the Anxiety Disorders Residential Unit at the Bethlem Royal hospital (Maudsley), Springfield Hospital in Tooting and the Priory Hospital North London in Southgate and seen world experts from all these hospitals as well as from the Centre for Anxiety Disorders and Trauma (Maudsley) as an outpatient.
I had no quality of life and the only tasks I attempted were the basics i.e. I ate, drank and used the loo and slept. When I used the loo I would be in the bathroom for up to 14 hours because of my OCD rituals. (I limited my fluid intake so that I only needed to go to the toilet once a day).
My overwhelming symptoms were obsessional slowness and included mentally reviewing every single action I took, just after I’d completed the action, e.g. I would carefully use one piece of loo paper, then take about 10 minutes to review it, then take the next piece of paper etc. The purpose of reviewing an action was to make sure nothing got contaminated during the action as I was terrified of poisons and other contaminants and of losing control. I believed that these hazardous materials got everywhere.
Reviewing was an exhausting process, compounded by the fact that I didn’t eat or drink enough and was clinically depressed so was physically exhausted too. This reviewing affected all the things I undertook. My slowness was so bad that, for example, it would take me 2-3 hours to cross my bedroom floor to get from the door to my bed and then another hour to lift my legs onto the bed and lie down. I barely ate as it was such a lengthy, exhausting and terrifying process to prepare food, even something as simple (for others) as using the microwave. I showered, changed my clothes and brushed my teeth only once a month as it was such an incredibly arduous task. I took an overdose.
My situation was desperate and I was open to any kind of new treatment.
Did you try any treatment before surgery and did they have any effect?
I was prescribed exposure and response prevention (ERP) CBT by every specialist I saw from when I was officially diagnosed with OCD in 2003 until the surgery in 2013. However, I found it impossible to do the CBT. I tried as hard as I possibly could, tirelessly, for years and years but it was mentally impossible. I can’t explain why and it was not just fear that stopped me. There was something going on in my brain that prevented me from stopping my rituals. I had to and needed to do them. Therefore, my OCD steadily and persistently got worse and worse despite all this well-intentioned and expert intervention and also unending family support from my family.
I was also on medication all this time. I tried all the recommended SSRI and antipsychotic medications but they didn’t do anything and neither did the CBT. I was only selected for the surgery because I had tried all the recommended treatments (CBT and medication) and been in all the specialised residential OCD units in the UK at least once.
What were the steps leading to Deep Brain Stimulation Surgery?
I was referred to Professor Keith Matthews in October 2012 for a preliminary discussion about Deep Brain Stimulation and whether I was a suitable candidate for a trial study of DBS for which funding had just been approved, which I was. I was then admitted in May 2013 for the surgery at the National Hospital for Neurology and Neurosurgery in Queen Square, London. It was explained to me by the surgeons that, although DBS for OCD is new, DBS has been a successful treatment for Parkinson’s disease and other movement disorders for decades and the surgeons perform the same surgery 3 times a week for other conditions.
The operation took 10 hours and included implanting 4 metal electrodes into my brain, through 2 holes which were drilled into my skull, feeding wires from the electrodes under my skin to my chest, where 2 neurostimulator packs were fitted.
What happened after the surgery?
When the system was first switched on the neurologists tried each contact point on each electrode in turn and waited 24 hours each time to see if I felt different at all. I didn’t feel anything for a few days but then I did.
I felt unexplainably excited and happy with a great sense of looking forward to life. Since I had reacted to that particular setting the neurologists increased the strength of the signal on that point and I felt even better. I recognised the feeling from 20 years before when I had been well. I was so excited. I found I could walk from room to room in the hospital much more quickly and, miraculously, my need to review subsided. Whereas before the DBS I had needed supervision and reassurance for everything that I did, I was soon performing tasks on my own. I started getting dressed again, went shopping in London with my mum (something I hadn’t done for 10 years) and after a few days of practice, I could use the loo in 10 minutes. It was absolutely incredible
How has the surgery affected your life?
The surgery has transformed my life. It was nearly 8 years ago now and I am living completely independently now and doing volunteer work. I still have (and expect I always will have) some OCD but now that it is only moderate I am, for the first time, able to do CBT and I know how to lessen it. My new YBOCS score has been pretty stable at around 20/40 (but my score before DBS was 39/40).
I now have a rechargeable neurostimulator in my chest which I have to charge, remotely, for about an hour each night. The study psychiatrists are monitoring me and I will be seen as an outpatient at the NHNN for the rest of my life for check-ups and neurostimulator battery replacements but that is a small price to pay for having my life back.
There is a DBS for OCD Facebook support group for anyone wanting to know more.
DBS is not yet available as a treatment in the UK, either on the NHS or privately, but that may change.