Originally Posted by stevem53

Hi everyone..It has been a long time since I have posted here..I hope you are all doing the best you can

I had DBS surgery on Nov 5, 2015 because I had wild dyskinesia, and I decided that enough was enough..I had plenty of the classic symptoms as well..Freezing, bad balance, falling down etc..No tremors


I had the surgery done at Beth Israel in Boston..I couldn't haved asked for a better team of Doctors..I had a meeting with my MDS/programmer, and my neurosurgeon prior to surgery..They both told me what to expect..They said they could do something with the dyskinesia but that was it..They said that I wasn't a great candidate, but that I was a good candidate


After surgery I had a profound micro lesion effect..Most of my symptoms were either gone or improved..This lasted about 6 weeks..Some of the symptoms came back, but a lot more manageable than they were before..However my wild dyskinesia was little to none, and four months later after two failed programming sessions my dyskinesia is still little to none..I was booked in January to try another setting, but I called my MDS and told him that nothing has changed since my last appointment, so he said that he would see me in March..I came in off medication as directed, and he examined me..Evidently they measure your examination on a scale of 1-100, with 1 being the best, and 100 being the worst..My score prior to DBS was 65..My score in the December post surgery was 43..My score on March 25th was 41..So I have actually gotten a little bit better since my last visit, and my stimulator batteries have been on for a total of one week since surgery..They are off, and have been off for about 4 months..The first setting lasted for a week, then it was taking 3-5 hours for my morning meds to kick in..Then I started to get wild dyskinesia, so I turned the batteries off, and my meds kicked in shortly after..The second, and most recent adjustment started off with my programmer telling me that he had a meeting with the surgeon who performed the surgery, some other Drs, and staff to discuss my case..And my programmer said that he didn't know what to do with me?..He was at a complete loss about what to do with me..He told me that what is going on with me has never happened before..The dyskinesia is 95% gone, and 4 months post op my score was 2 points lower than my last examination, with the DBS shut off..My programmer did not know what he should do..He said, lets leave it the way it is for now..Then he changed his mind and wanted to try a few settings..So I decided, that since it worked at the hospital with me off meds for about 15 hours, I thought it best to turn it on when I went to bed, and my meds had gone off for the day..When I woke up the next morning, my mouth felt like my upper lip was pulling to the right, and my bottom lip was pushing to the left..My mouth felt like it was twisted..So I shut the thing off again, and that weird feeling did not go away immediately like it was supposted to do..It took about a hour to go away


I wanted to mention that the DBS was done in the GPI area of my brain, and these Drs are so at a loss, that they asked me if I would be willing to have an MRI done to re- check the lead placements..So I see them June 3rd for that..My programmer is very, very good at what he does, and my surgeon has done over 1,000 DBS surgeries in his career, and is considered one of the best neurosurgeons in his field


I am very curious about the results from the MRI