Vercise DBS trial

[Hogan]

Hi, I am new here. I am looking for recent input from anyone who is part of the Vercise Boston Scientific DBS trial. I noticed some older posts but nothing more recent.

Thanks

Hoganab

[llwwd]

I am a participant of that trial. I had DBS last Aug. 2015.

[Hogan in reply to llwwd]

Would like to know how it has worked for you and what symptoms did it help? Also were there any problems with programming? Anything you could share would be helpful. Thanks

[llwwd in reply to Hogan]

Hi Hogan, I had my surgery in SLC, UT. The first few months were fantastic. The surgery was not painful. The recovery was very quick. I was nervous about falling and hitting my head but other than that if I had still been working (I'm retired) I would be back to work after a week. I was tired though. The most striking symptom it helped was the tremors. It helped them tremendously. I did start to have my right side toes curl & my hand went into a claw like position. I couldn't straighten them out & walking on my curled toes has been painful. My nuero has had me on several different programs trying to fix the toes. When I get a new program it usually works very well for a day or two & then back to the curling. I have had programs that have caused me terrible depression, choking and dizziness. Right now we are trying different doses of Sinimet. It seems to be helping. I need more sinemet to keep my toes from curling and my muscles from being very tight, sore & tired. I don't think they wanted me to go back to the same amount of drugs I was on pre-surgery,but except for going off Azilect, I am back to 5 times a day on sinemet & one time with Mirapex. I do think that exercise does help. Stretches and walking along with a recumbant bike are what I do. If I sit too long I become very stiff. I am theaching myself how to crochet & play the piano. I think it's important to keep learning and moving. I'm sorry this has gone on longer than I intended. I also had a CT scan last week because my nuero wants to see where the leads are placed for hopefully better programing. Any more questions just ask me. I'm not sure how you do a private response.

[Hogan in reply to llwwd]

Thanks for replying. I'm glad the surgery helps the tremors. I like your idea of learning new things. I hope the CAT scan helps identify where the leads are and that the programmers can make adjustments.

[llwwd]

Hi Hogan, I was wondering if you knew of a programmer with lots of success stories? I also wanted to know if you know once you are in the Vercise program , can you change to another programmer? Have you made up your mind about having the surgery?

[Hogan]

Hi,

I have not had the DBS evaluation yet so don't know if I will do the Vercise or Medtronic yet. I don't know of any programmers where I live and the center where I will go hasn't done many of the surgeries. So I am a little concerned about programming also