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    • #20377
      Mary Beth Skylis
      Moderator

      My Dad had Deep Brain Stimulation (DBS) nearly two years ago, and the results were shockingly positive for him. But he struggled with fear and nervousness, wondering if the surgery would make his symptoms worse. What are your thoughts about DBS? Have you had it? Do you hope to have it? And do you think it’s worth the risk?

    • #20521
      Charles Schiller
      Participant

      Scares the hell out of me.

    • #20522
      Regina
      Participant

      If your neurosurgeon believes it to be beneficial to you, I would definitely recommend it.  I was diagnosed in Oct. 2017.  I can’t tolerate all the meds including the patches.  Only Rasagiline.  I had dbs surgery in June 2020.  I know I still have PD but feel so much better. I bought myself a floor harp and want to learn how to play.  Why not feel as good as you can for as long as you can?  I am 68 years old.  Go for it!

    • #20525
      Russell Dean Boyer
      Participant

      I’m waiting for an appt to discuss DBS. I am hoping the neurologist will say it would be beneficial. The idea of it is not very frightening to me because I worked in the pharma industry and know that a doctor who was trained at the UCSF Center of Excellence for movement disorders is competent and can be trusted. I mean, nobody wants things poked into their brain, but if it is a choice of that and being miserable from PD, I want to get some symptoms under control and am willing to try something so commonly done as DBS.

       

    • #20529
      Jeffery Hill
      Participant

      Surgery strikes me as frighteningly invasive.  At this time I’m only taking Risagiline and not levodopa, so I have yet to experience the relief that it may provide.  I’m becoming weary of my tremor.

    • #20530
      Jack edmonston
      Participant

      Focused Ultrasound (FUS) is cheaper, far less invasive, has almost no surgical risk and is just as effective as DBS. However, US has been slow to adopt the most successful version of FUS for PD, which is practiced at SoniModul clinic in Switzerlaned. Even as I type, a fellow PWP is boarding a plane for Zurich to get his other side treated after having had remarkably good success with the first side. Each side costs around $40,000. US has been promising clinical studies of this procedure but has not yet conducted them.

    • #20526
      RG
      Participant

      I’m scheduled for DBS at end of April. Diagnosed in 2012 and just turned 60…..can’t wait!

      • #20538
        Russell Dean Boyer
        Participant

        I agree with MaryAnn. Focused ultrasound is less invasive but it is ablation and therefore irreversible. If a better option comes around it may not be possible for people who have had focused ultrasound.  I have heard that since Michael J. Fox had ablation he can’t do DBS now.

         

         

        • #20543
          Jacqueline Cristini
          Participant

          Absolutely correct.  It is irreversible and does not really address other symptoms of PD, such as slowness and stiffness.  The worst case scenario with DBS is that you do no appreciate any major benefit but it is not permanent.

      • #20544
        Jacqueline Cristini
        Participant

        Wishing you well!  An experienced DBS team makes all the difference.

    • #20524
      twok
      Participant

      I have heard of adverse side effects after surgery, i.e. speech problems…not to mention stroke, death.I feel that I would consider the surgery if the latest technologies were used, but my hospital uses older techniques and there is only one surgeon who performs all of the dbs.

      • #20541
        Jacqueline Cristini
        Participant

        The technology has come a very long way.  I have been involved for over 15 years and am pleased to advise that patients now have three different devices to choose from.

    • #20536
      MaryAnn Cavanaugh
      Participant

      I had DBS in 2019 for tremors. It has proved highly effective in stopping my tremors. I also have a wonderful programmer.

      Although I can understand why someone might choose Focused Ultra Sound as it is considered non-invsasive, but I would not want a procedure that is permanent and irreversible. DBS may be reversed by removing the system or turning it off.

      • #20540
        Jacqueline Cristini
        Participant

        It has been a life altering procedure for many PWP (people with Parkinson’s).

      • #20539
        Jacqueline Cristini
        Participant

        Hi Maryann! You were my patient and did exceptionally well…..missing you!

         

        • #20545
          MaryAnn Cavanaugh
          Participant

          Hi Jacqueline. As you know, a a great programmer can make all the difference and you are great. Miss you too!

           

    • #20558
      Kate Rodrigues
      Participant

      Hello

      DX 2014. Went from 3x per day to 6x. Tremor is not an issue for me. Just started some mild  bradykinesia But my neurologist says it would be good for me. I live alone at 72 and I need to be independent as long has possible. I’m on the waiting list at Kaiser at Sacramento. Meanwhile working on anxiety and fear of the procedure. Especially the being awake part.

      Blessings to all of you

    • #20574
      Regina
      Participant

      I agree with comments encouraging DBS if it is recommended by the surgeon.  I had it done all in one day.   Almost a year ago.  Now with all stimulator programs no one could tell I had both PD and ET.  Most improved are tremors, some improvement with walking.  At first I was a little frightened but went for it.  If your neurologist recommends you to a good neurosurgeon which I had researched and he/she recommends it for your particular symptoms go for it

      Regina

       

       

    • #20824
      Sabine
      Participant

      My husband had DBS surgery in February 2021. He is doing great. He describes the changes as “I feel like I woke up”.

      Of course things are not like they were 20 years ago. But the improvement is significant. After his first programming the tremor was well controlled but he had issues with his gait. His neurologist made him a second program that does not control tremors as good but he can walk. He is now just switching back and forward between the what we call “clinical setting program” and the “walking program”.

      Over time he adjust pretty good to the clinical setting program and can walk for hours without a problem. However, when we do a steep hike he uses his walking program.  His posture is so much better and he enjoys doing woodwork and shooting arrows again.

      He says he would do it all over again. Surgery was not a big deal for him. He had each of the three surgeries on a Monday, came home from the hospital on Tuesday and worked from home as a programmer Wed, Thu and Friday.

      Programming is still continuing every two months to get as close to perfect as possible. .

    • #20825
      Jacqueline Cristini
      Participant

      I’m so glad to hear that.  I have been involved in DBS for over 15 years and program patients almost on a daily basis.  The technology has come so far since its inception.  I am always trying to raise awareness of this incredible therapy through support groups and educational forums.  So many PWP kind of fall through the cracks either because they are not aware of this intervention or they receive bad information.  Good for you!

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