In response to Barbara Smith's second question, about speech problems after surgery, I offer - not an answer, but an observation. The results of published studies are varied and inconclusive. I do know that I have experienced a decline in my ability to speak clearly, especially by the late afternoon. Some people turn off one side of their stimulation and their speech improves, but their writing ability disappears. Frankly I would be concerned that I couldn't turn myself on again!
I think that patients have been complaining about their speech getting worse after DBS/STN but nobody heard us. Recently, some of the researchers began conducting studies (too few patients, no control groups) and lo & behold they found increasing speech problems. Now, at least, they can focus on the aftermath of surgery and begin to discover what conditions may cause or at least contribute to the appearance of slurry, soft spoken, breathy words.
In case there is no quick fix for speech problems, I take solace in all the positive changes I am experiencing with DBS.Who knows if I could even express a thought, or take a step had I not had my surgery. Keep learning -- there are new discoveries all the time.
Margaret Dx PD: 1980 DBS/STN: December 2000
Subject
Re: NEED A PROGRAMMER
Date
25 November 2003
Posted by
Margaret Tuchman
In answer to Barbara Smith's first question about finding a programmer closer to her home, I suggest calling Medtronic, at their toll free number, 800-675-5752. They list this number as a resource to find doctors in your area who do DBS and most probably programming as well. Their website is quite informative, if you can get on the internet, go to I strongly recommend that you speak with your neurologist and programmer and ask them to refer you. This is routinely done for people who find it too difficult to travel. You will need your records transferred to the new facility.
Good luck, Margaret
Subject
NEED A PROGRAMMER
Date
24 November 2003
Posted by
BARBARA SMITH
WE LIVE IN SHREVEPORT, LA. AND HAVE TO TRAVEL TO HOUSTON FOR PROGRAMMING. IT IS VERY STRESSFUL AND EVEN EXPENSIVE TO TRAVEL. IS THERE ANYONE CLOSER TO US THAT CAN DO THIS? ALSO, WHAT CAUSES THE SLURRED SPEECH SO BADLY? THANK YOU FOR YOUR HELP.
