I have had DBS on Nov 2012,...... inspite of several tuning sessions unable to find the "sweet" spot.... frustrated

14 Replies

  • I guess that each of those of us who have had DBS will more than likely have a different story to tell. I thought I had found the sweet spot, but recently have experienced a significant increase in tremor and rigidity - it has suddenly crept up on me. Tony

  • Tony...very true...all of us diff experiences....was frustrated as we were going nowhere fast...but i think the problem may have been rectified...changed the programmer...sorry to hear about the tremors and rigidity....that is exactly my prob



  • Professor, u are right... changed the programmer....keeping fingers crossed:)

  • It takes a long time, perseverance, and an excellent programmer. I changed programmers and that made a huge difference for me.

  • Jash, u are so right...i changed mine too...lets see:)

  • Jash is right. Remember that it may take some time. A good programmer is crucial. How often do you go for a "Tune up"? I felt immediate relief when my DBS was turned on in Feb. 2007. But it took about a year of going every three months. for adjustments to truly take effect. I am going this Thurs. for my first "tune up" in 6 months. I have very little I need the doctor to make major changes this time. I've also had adjustments thru the years where I've had to go back earlier than my next appt. which is usually every 4 months. Also keep in mind that DBS is not a cure. You will have to continue to take medication as well. PD is a progressive disease. Which means it is always getting worse. Thus the need for tune ups several times a year. Where do you live and what are your options for programmers? Don't get frustrated. Stay strong!!

  • 98Rob, Thank u much for ur encouraging reply. as this is my first year, i am going every three months...have had several programmers, but now the doc has taken over so shud be good

  • Not only does it take time for your brain to heal and adjust, but your whole body is in a new suit and alterations are necessary. After about a year, I got an excellent bloodwork report from my doc. Said it was consistent with my "younger" self. I thought they had just mixed up the labs. But my PCP said he's seen this many times when people with chronic diseases get them under contralt and managed well ( like diabetes for example) that overall health improves. Good luck. May the best possible outcome be yours

  • true though..yes it does take time for ur brain n body to heal...luckily otherwise my health is ok other than hypo thyroid

  • I had my DBS surgery in Jan 2013. I am still undergoing programming sessions about every 3 months. I have had a decrease in tremors and internal feelings of tremor but I am very slow moving and don't move my left foot well in the evening. I also become very stiff and have a lot of back pain and rt hip pain. I don't know if these are Parkinson's related or arthritis. I too feel frustrated.

  • oh sorry to hear that, yes we do tend to attribute most of our aches to PD..Hope u feel better

  • Did you have the awake or asleep DBS?

  • I am sorry I disappeared after posting this....was having my meds titrated after a tuning, and my body is sensitive...we may have reached the right cocktail mix so to speak:) Thank u for ur responses.

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