As many people who read my blog know, I've been struggling with the programming of my DBS for the past 10-11 months. After I had the surgery, I had what is known as a lesion effect. Basically, my tremor went away completely even when the leads were not powered on. This lasted about a month or two, and then the tremor came back with a vengeance. It has not really gotten better since and none of the settings we've tried have seemed to work. My walking still stinks and I'm either taking the same amount or more of my Parkinson's medications.
Back in May, my neurologist had me do a CT-Scan to check the lead placement. Well, the neurologist who was in surgery with me and who was performing my most recent programming called yesterday to inform me that my neurosurgeon had examined the CT-Scan and compared it to the scan I had after surgery when they were diagnosing my stroke. It looks like the leads of the electrodes have moved, possibly on the order of 10 mm. While that might not seem like a lot, in brain surgery terms is huge. It basically moved the leads out of position that could help me and explains why my DBS is not working the way I and my doctors would like.
What this means for me, I'm not sure. Since my heart attack in February, I have been on blood thinners. So, surgery for me is riskier, because I have to discontinue taking that medication probably for a few weeks before they can schedule a new procedure. Also, if they can put the leads back where they are supposed to go, will it take a completely new procedure or can they do it without opening my brain, and with a tremor starting to appear in my left side, is that the right decision anyway?
I'm supposed to meet with my neurosurgeon next week. Once we meet, my wife and I will discuss my options. It is scary and exciting. I want the DBS to work, but we will have to wait and see what happens.