I have not posted here in quite a while..I posted here for years, starting in 2004
I hope all of you are doing well, or 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 Microlesion..(HONEYMOON)..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 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 litle 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..The he said no, lets leave it alone..Then he asked me what I wanted to do?..I told him that my balance is bad, so lets give that a shot..He said ok, lets try that..So he set one side at 1 volt, and the other side at 1.3 volts..When I got home I turned I on, and played around with it..My meds were working at the time and I felt weird when I turned it on..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..I have had pd for about 14 years..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 as well

Steve -- the odd mouth twist seems more like dystonia. My classic dystonia is my "monkey paw" right hand that curls in. Right Foot curls in, and the oddest is my mouth will twist. The muscle that opens and closes your jaw both decide to see who will win (leaving me with a closed jaw). First time my wife saw it, she thought I was having a stroke. Not fun.

Thankfully the dystonia is well controlled by my Levadopa medication. Oddly enough Parkinson's was left side only, Dystonia right side only (writers cramp started when I was in second grade -- never heard the term until my MDS asked how long my hand had been that way when writing).

MRI should give an idea if things shifted, so hoping for the best. Keep us up to date.

Tom, my last programming visit was about a couple of weeks ago..as I mentioned in "My DBS Experience" thread, my stimulator batteries have been off for 4 months and my symptoms have improved a tad since December..My wild dyskinesia is still gone with the absence of stimulation..My MDS/programmer and the DBS team that did my surgery, are at a lack of an explanation for what is causing this phenomenon..He basically wanted to see me for a check up, but was hesitant to do any programming..So after going back and fourth, he asked me what I would like to do..So I said that my balance could use some improvement so he put me on a low setting, and in his office I had some success..It was 1:00 pm when I was able to take my meds..I took my last dose of meds the night before at 6:00 pm, so I was off for a very long time..After the meds kicked when I got home I turned the batteries on, and I felt really weird, so I shut it of again, and decided to leave it on all night after my meds wore off, and see if it helped..It didn't..I woke up feeling that jaw dysfunction, however, I went and looked in the mirror, and my jaw wasn't crooked...I opened my mouth, talked, and my jaws were straight..So I turned the DBS off again, and it took about 3/4 of an hour for this feeling to go away, and it never came back..Why my DBS has gotten rid of my wild dyskinsia, and has improved my symptoms with the absence of stimulation is an ongoing mystery