I had DBS in August 2015 and I can say that recovery from the op was not pleasant. After nearly 3 years, seeing the consultant every six months, I was in doubt whether or not the DBS was doing any good. My voice is very slurred and it’s a strain talking. I have a lot of freezing moments, and pain in my ankles, legs, back and neck. The operation sites in my head can be very sore, especially combing my hair. I struggle walking round the shops with a feeling that I’m going to fall and my eyesight is deteriorating.
I had breast screening a few weeks ago and it was so painful where the battery was positioned, I declined after three attempts. I was so frightened the battery or the wires had been damaged I made an appointment with the PD consultant, not the DBS specialist nurse, for the following day. After retrieving the DBS programmer from the nearest hospital, he proceeded, unwittingly, to reset my DBS to manufacture’s settings. I was wiped clean!!
I soon found out what it was like without the DBS. Initially it was quite good with my right hand tremor the only thing that returned. The evening wasn’t too bad, then night time came! Every atom in my body was screaming out. As it was an emergency, I got an appointment with my specialist nurse the next day and she finally switched me back on around 11 am. Whew! What a relief. I realise now that the DBS is a work in progress. It’s trial and error with the settings and the drugs. I just hope they find a cure very soon.