I was wondering if anyone out there has had DBS. My doctor says nows the time for me to get it, and I would like to talk to other people who have had it done, and have they had a bad side effects from it. I live in Chicago and am thinking about going to RUSH hospital. Any info would be helpful.
Thanks
following
The golden rule with DBS is to keep expectations low. So a positive result will be a huge boost, (90% of people get a result) but 2% have negative results and 8 % neither here nor there. I did it 2 years ago and then had to redo again as the electrode had slipped.
All attempts at programming both in England and in Italy (Boston Versus system) have been of little success. But I did get my meds down!!!
You will need a lot of patience as dbs is not a quick solution. It’s taken me six months to get calibration right. It’s helped with tremor and stiffness and I’m pleased with it. It’s good to have in your corner. I’m 63 diagnosed 2010. Happy to answer questions. Dbs carried out in Uk under nhs.
Best
Alex
Alex I'm scheduled to have DBS on the 28th of February. It's going to be at Thomas Jefferson University Hospital in Philadelphia PA. Can you tell me about the pre-testing specifically the psychiatric pre-testing? I'm concerned about the testing because I've never been good at taking tests. I know they're looking for signs of cognitive regression and I don't think I have that but I'm just apprehensive. Can you tell me about your pre-testing experience? Thank you
Hi it was a bit repetitive picking numbers and sequences of words. Found it a bit tiring to be honest. I agree they were checking for conignatve reasoning/recall. There was a story memory test. Best advice I can give you is try be calm and take deep breaths and use questions if you don’t understand what they want you to do. Good luck
Alex
I had it done 5 years ag[o and it has given me my life back. I disagree keep expectations high especially if you have an expert "tunerperson!"
I had it done almost 7 years ago. At the time it was a fight with post surgical infections that ultimately cost me a year and five subsequent brain surgeries. looking back at that grusome struggle with pic lines with IV bags and pumps in-between at home I am amazed that I persevered and got through that whole process. I got to know the process and surgical team intimately to say the least....... Now 7 years and a normal battery replacement later, I am over all pleased with most aspects and results it (they) have achieved. I would definitely do it all over again! I agree with the moovinngroovin's statement about the "tuner person" being my greatest concern. I find the need for programmers that are worth a damn the biggest caveat to date. I go with my list of progressions that I'd like addressed (this is something they fail to address b4 the installation), and it is sometimes a crapshoot to relieve one area with out unmasking another. Find a good programmer and stick with them!
There are not so many therapeutic options for parkinsons patients, I got a DBS and the results are not optimal, but without the stimulation (finished by accient) it was much worser.
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