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    • #19021
      Mary Beth Skylis
      Moderator

      My Dad was able to undergo Deep Brain Stimulation last Fall. Since the surgery, he has seen weight gain (which was a positive effect), fewer issues with dyskinesia, and a resolution with urination frequency. Have you undergone Deep Brain Stimulation? If so, what changes have you seen? If not, why not?

    • #19454
      Roger Surette
      Participant

      I underwent DBS 5 years ago after nearly 15 years of gradual degradation.  I’m a PIGD victim instead of the more common tremor type.  I had my procedure done at Oregon health science university (OHSU) by Dr Kim Burchiel with full anesthesia.
      I would rate my success very high in general. I also would need to admit I have been on a steady decline over time.  I occasionally wonder what I would be like now if I had not received the DBS…  many of my fellow victims that were around my initial diagnosis period,“aren’t today.”!

    • #19477
      George Kapetanakis
      Participant

      I had my operation done about three years ago in a six-month span. I am off Sinemet and for the most part no other medication. I am always trying new supplements with no much success. Although I had a little luck lately.

      The latest being Bacillus Subtilis, which helped me with my constipation a lot and now I am trying Butyrex which seems to help a lot with the same issue. For now, I’m taking one pill of Bacillus and two of by Butyrex. Soon I’m planning on going to Butyrex alone and slowly increase the dosage.

      Still, I think it’s time to see my Neurologist for some adjustments on the settings. Due to COVID-19 I was not able to see her for almost ten months and since there was no urgency I opted no to.

      I would say my DBS was no cure but a big improvement overall. GLTA

    • #22229
      Cemal
      Participant

      Anyone make a post this topic if have any experience with DBS ?

      Thank you…

       

    • #22231
      Christine
      Participant

      hello! I had DBS only two months ago, and I’ve seen dramatic changes.

      greatly reduced tremor.

      medication reduced to 4 x 1/2 levodopa per day, as opposed to 12 levodopa per day, 1 every 2 hours.

      I can sleep through the night.

      Weight gain (positive).

      less stiffness

      I am more expressive

      Thats all I can think of right now, but there hasn’t been any downside to this surgery, for me at least!

    • #22239
      Marjorie Weiss
      Participant

      My husband had DBS in 2007 and 2009 and he still receives great benefit.  It took away his tremor (except when stressed) for years and removed all the pain he had had in his arms and legs. He does tremor now but not all the time.

    • #22249

      Não.O médico pura e simplesmente me informou que não reunia condições para tal acto.Foi em 2015, tinha 65 anos.Disse na data que a medicação para mim era eficaz.O meu interesse era mesmo a cirurgia.Agora com 71 anos, perdi as esperanças.

      Translated via Google translate:

      No purely and simply medical doctor informed me that he had not met the conditions for such an act. Foi in 2015, he was 65 years old. There was no date that the medication for me was effective. Or my interest was the same as surgery. as hopes.

       

    • #22283
      kent graeve
      Participant

      I had DBS surgery in August 2020.  Prior to DBS surgery I had severe tremors on my right side.  Tremors in my right arm & hand were quite severe.  Tremors in my right leg were present but not as severe and the right arm tremors.  The tremors in the right arm/hand forced me to do virtually all my activities with my left hand.  For a right handed person this was difficult.

      Changes in what I am now able to do with my right hand have been dramatic. Right side tremors no longer exist.  DBS has been life changing!

      Kent Graeve

    • #22303
      Leon Celnik
      Participant

      I am 72 but feel a lot younger. The last 10 years have been traumatic, worsening by the minute. The last one was horrible. Besides of the dreadful and disabling dyskinesia, lately I just couldn’t hold steady a glass, a spoon or a knife with my bare hands and my wife had to help me to eat, so, I took the determination of having DBS surgery. It was not an easy choice. I feared having my brain exposed and scrambled, and, worst of all, the terrifying idea of staying conscious at part of the intervention. Not only my fears about the operation itself, but I had to appeal to a psychologist to help me keep calm during the procedure. I had to be convinced that it was a good thing and should face it. I live in Bogota, Colombia, and had my doubts about the quality of the equipment, technique and the medics’ operating skills . But anyway, I took the decision to go for it. At last, I got the surgery in February this year. Being awake during part of the surgery was quite easy and not as traumatic as I thought. The anesthesiologist did the magic. The intervention took about 14 hours at all, including the insertion of the neurostimulator in my chest, but I was asleep almost all the time. They finished at night (since 7 AM) and I had a good and quiet night. The next day, almost 12 hours later, they sent me to my home, prescribed with only Acetaminophen if I felt pain. Since then, my life turned 180 degrees. Its like born again. Right now, I have a normal life. No more dyskinesia, no more tremors, which disappeared almost 80%. Nobody knows what it is worth to drink a glass of water without watering it, cut a piece of meat by yourself and so on, actions that one does for granted. I’m conscious that this is not the end of my illness, but now I have a normal life, I walk without falling, I drive my car (obviously taking all the precautions). The only remnants of the sickness are the lost of balance at rare times, and the hands trembling is almost imperceptible. I’m quite happy and grateful to know that here in Colombia we have such advanced medicine and thankful to the neurologists that make it possible.

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