I had DBS this fall 9/2015 I had real positive 'improvement before it was turned on in Oct. I had less shaking, could roll over in bed had great stamina. Dr. turned it on and turned way up it contorted my face now I have trouble speaking clearly but have cut my sinemet in half. I have more shaking now between doses but no dyskinesias! I stumble more am told to give it a year. Right now I am not thrilled but hopeful it will be all I had hoped for!

14 Replies

  • Hi, DBS does take time to settle but I think you may, at this point, be over stimulated. Ask your Dr to turn you down a bit and see what happens.

  • i agree I had dbs surgery in 2014.

  • Tuning is EVERYTHING! I have had mine for a year and when it is turned too high that's what happens--your body goes haywire! Find someone who knows what they are doing. I take NO meds!

  • How do you find someone who knows what they are doing in regards to DBS programmimg?

  • Same way you would find out about a doctor/neurologist--interview, research...internet...

  • Our neurologist is really pushing for my husband to have DBS. His tremors are in both arms and nonstop, driving him crazy. Nothing helps, we have tried different meds. I'm not a fan of doing this surgery because I'm afraid that he could be a part of the percentage of people that don't have good results. I fear that he won't be Ble to do the things he does now even if it is difficult. So many negative stories. The doctor plays it down.

  • We are in the same boat. So unsure of this procedure.

  • I had DBS 6 years ago and would do it again today if I needed it. Please don't be afraid. There is little to no discomfort with the procedure. When I met my surgeon he assured me by reminding me that while I was afraid of the unknown, he preformed several of the procedures weekly and he knew exactly what he needed to do. My fear was overcome the day I tried to feed a bottle to my newborn grandson and my tremor was so violent that I feared I would hurt him. Find a doctor you trust and schedule that procedure-no one needs to accept doing things with difficulty.

  • Right docs & tuner.

    I had it done 2 years ago-now-no meds!! Gym everyday! My life is back!!

  • What did you have done, DBS? How old are you? I'm so happy for you that things are going so well. Let me know what you did.🤗

  • Yes DBS!! I am 65 and was 46 when this thing showed up!

  • I too got the surgery in sept.as well. Tremors are way less but bradykinesis is back on or up / sinemet is reduced from 14/day to 6 /day and azilect has been suspended which greatly helped my HYPOTENSION. SPEECH sucks as well as sleep / DEPRESSION on the rise. HELP!!!!

  • Right docs & tuner.

    I had it done 2 years ago-now-no meds!! Gym everyday! My life is back!!

  • If your settings have not changed since Oct and you are still having trouble, then you don't need additional time to see if you happen to get better. There are several adjustments to the stimulator that can be made, such as changing the amplitude of the wave, the frequency of the stimulator, the pulse width, and even which of the 4 electrodes implanted in your brain are used to deliver the current. It sounds to me that you need some adjustments but it is usually trial and error to see which adjustments can be made. As if your neurologist is comfortable enough to be willing to made the necessary adjustments. If not, I would seek out someone with more experience making these adjustments.

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