I can't remeber if I shared my story with this forum or not so to offset my absent mind here is the short version. I am 36 now. Symptoms started at 30, with Dx at 32 (my better half corrected me). C/L-Dopa etc was working ok until mid-2010 when it kept switching off on me. I was upto ~9 sinimet /day speard out over 5-6 doses + comtam + many others.
Then in late 2010 my wonderful wife got me into a world leading DBS program at Ohio State Medical Center. I was short tracked for the DBS in-plant. Work was very supportive but all the Sinimet was sending me around the bend and we (me and work both) were looking for an easy way for me to ease out of work. Then in April 2011... DBS in plant. Amazing results. Initially there was euphoria as it appeared to fix everything, then stabilty around Oct. I was back to fulltime work in June 2011 and killing it. By Nov 2011, the DBS doc's said I had a non-healing wound but I felt great. By Jan 18th 2012 they made the decision to go in and revise the incescion and found a sub-cranial infection at the sametime. The left side (controls my worst side which is right) was removed during the revision surgery on 18th of Jan 2012. I have been without DBS since then and back to relying on meds.
I don't tollerate the meds well but they work. On the other hand the DBS is a miracle. I was so lucky to have a great response to the surgery. Anyway, the marvelous docs at OSU called my wife today and on April 10th 2012 (nearly exactly 12months to the day) I am getting my left side DBS put back in!! I just can't wait. I certainly appreciated the DBS last time around but it took a while to not take advantage of having the clock wound back 20years. I will take that as a leason as I move into April 10th and the return of the "Million Dollar Man" (as my kids 11 & 8 refer to me). My wife and kids said the first DBS was a 2nd chance to hold our family together. We are much stronger today as a family because of DBS. Facing the 3rd surgery doesn't seem so intimidating.
No one plans well enough for the challenges many of face in life. Sometimes luck, goodwill and the postive thoughts of others can carry the whole world and many of us a long way. Just thought i'd share some good news.
Sinemet intake blocked by Proteins
Rapid decline after DBS?
Duopa pump
I vont to be alone…………
