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    • #22494
      Mary Beth Skylis
      Moderator

      My dad had Deep Brain Stimulation in the Fall of 2019. While it took some time to see the impacts of the surgery, we soon realized that it positively impacted his dyskinesia. And he seems to think that he takes less medication than he did before the surgery. Have you undergone Deep Brain Stimulation? If so, what kinds of changes did you see? If not, are you interested in getting the procedure done?

    • #23156
      Mitchell Niese
      Participant

      I’m currently investigating getting DBS and would like to here anyone’s experience with DBS.

      • #24271
        Ron Lusk
        Participant

        My first operation was Dec 2019. I with help from my doctor (programming) I have regained much and can walk again. However, it could not get rid of hand termers, so another operation put a third Lead in my brain. It really helped. I have a great doctor here in Fort Worth Tx If you are interested, you will need to pass two tests for dementia, etc. first. Note, almost everyone needs 2 leads and not 3 like me.

        • #24288
          Jody Kearns
          Participant

          I had dbs a number I years ago and it has been very helpful I was having surgery to replace my batteries and the doctor wanted an ekg so they had me turn off the dbs

          Well within seconds I started to shake like crazy

          they couldn’t get the ekg because I was off

          I told them it would not possible because I was totally off that really make me realize how important the dbs is

           

        • #24289
          Jody Kearns
          Participant

          I had dbs a number I years ago and it has been very helpful I was having surgery to replace my batteries and the doctor wanted an ekg so they had me turn off the dbs

          Well within seconds I started to shake like crazy

          they couldn’t get the ekg because I was off

          I told them it would not possible because I was totally off that really make me realize how important the dbs is

           

        • #24290
          Jody Kearns
          Participant

          I had dbs a number I years ago and it has been very helpful I was having surgery to replace my batteries and the doctor wanted an ekg so they had me turn off the dbs

          Well within seconds I started to shake like crazy

          they couldn’t get the ekg because I was off

          I told them it would not possible because I was totally off that really make me realize how important the dbs is

           

    • #24188
      Charlanne South
      Participant

      My husband hasn’t done dbs, but I’m interested on it for him.  Where do I start?

      • #24204
        Marjorie Weiss
        Participant

        Talk to his neurologist to get a referral.

    • #24195
      Francisca Winkler
      Participant

      I’m very interested in DBS. I do not understand why they require testing out the medications, as by then the symptoms may have gotten worse.

      I know that there are some doctors who will consider performing this without all of the medication trials. Any thoughts?

      • #24202
        STEVEN OPPEN
        Participant

        This reply may not nake sense to you – it may sound that it is politically driven, But it is not. The reason for the idea of using screening techniques to determine who should be a candidate qnd who should not are all dirven by the desire to have a very high % of success in the results. For example, not many PD patients over 80 years old qualify. Their relative degree of frailty make them poor candidates. Another factor is that good candidates still respond well to their levodopa medicine. If you son’t feel better after your dosage of Sinemet, Rytary, etc,. then you probabky won;t get much benefit out of DBS. It may sound counterintuitive, but these are some of the qualities that neurosurgeons look at in making patient choices.

         

        This is a very poor description of the csndidate sorting process, and I hope that someone with a strong science beckground can do a better job .

    • #24205
      Marjorie Weiss
      Participant

      My husband had DBS in 2007 and 2009 and still gets great benefit from both implants.

    • #24209
      Barbara Ford
      Participant

      In April 2022, I underwent DBS at UT Southwestern. Age is 75. Year diagnosed, 2013. To qualify for the surgery, a number of tests are given by UT psychiatrists. They were testing my cognitive, logic, and problem solving abilities. They were looking for signs of dementia as well. Thankfully, these tests I passed in flying colors.
      The results of my DBS surgery were immediate, but I admit to causing some recovery difficulties by not acknowledging (to myself) that I had just undergone delicate brain surgery, as well as a general anesthesia to connect the electrodes to the battery pack. There was no pain associated with the surgeries. When I overdid my body’s ability to continue, extreme fatigue would require immediate deep sleep. Generally, sleep would revive me.
      This is an example of how easy it is to sabotage your self!
      Although I have some breakthrough dyskinesia and tremors, I am beginning to understand why this happens and having fewer and shorter breakthroughs.
      My Rytary has been adjusted once, and l hope that as I progress, we will be able to adjust it again.
      Yes, I am glad I had DBS. Yes, I would do it again if necessary.
      IT Southwestern neurosurgeon is Dr Pouratian

    • #24226
      Regina
      Participant

      I was diagnosed in 2017 age 65.  I also have essntial tremor which I controlled with limiting caffeine and stress.  In October 2017 I was in the ER with tremors. Neurologist for movement disorders diagnosed me in November 2017 with ET with parkinsonian features.  Patches messed up my skin big time and 2 medications got me very sick.  Upon my request, my neurologist wrote a referral to neurosurgeon.

      DBS has given me a new lease on life.  Tremor improvement with some improvement with walking.  I bought a lever harp and teaching myself to play.  I keep busy and have good strength in upper body.  Balance and stairs are challenges.  Hope this helps.

       

       

       

       

    • #24252
      Christine
      Participant

      Yes, I had DBS in August of 2021. I was diagnosed in 2015 at the age of 54. My main issue was tremor, and I responded well to Levodopa. As Steven Oppen (above)said, if you don’t respond to levodopa, you probably won’t have good results with DBS. I have another friend who had DBS about a month after me and he didn’t have good results, maybe because levodopa never worked for him? Who knows.

      For me, however, DBS was life altering. I feel so much better and can do so much more.

       

       

    • #24260

      I received DBS in December 2018 at Karolinska Hospital in Stockholm in Sweden. I am from Iceland. I was asleep all the time but before that people were awake to instruct the doctors if the electrical signals were located correctly. Power was started 30 days later. I did not take any medication for the first few days as DBS gave me energy without being connected. A current was applied to me when a month had passed. It took quite a long time (1 year + COIVID 19) to adjust. I take half less levodopa (madopar) after connecting to DBS. DBS has changed everything for me today.

    • #24273
      Ken Aidekman
      Participant

      I have not undergone Deep Brain Stimulation but have followed developments in it for a long time.

      I’m surprised the medical team that organized and performed the surgery did not tell your father that he would be able to take a lesser dose of Levodopa once his stimulator began working. Many people need less than half their dose before surgery.

      Dyskinesia is generally a side-effect of longterm Levodopa use. I’m in an early stage of PD so I haven’t experienced it yet. But many people with PD experience it within 5 to 10 years of taking Levodopa. After a certain number of years increasing doses of Levodopa are needed. Dyskinesia can be a side effect of taking too much Levodopa as PD progresses. The bottom line is that having DBS lower the amount of Levodopa you have to take reduces your dyskinesia while ameliorating certain other PD symptoms.

      The more symptomatic relief you get from Levodopa, the better your chances for successful DBS surgery are.

    • #24275
      Denise
      Participant

      My husband underwent DBS surgery last November. Sadly, he made up the 1% that results in a brain bleed. It took hospitalization, step down facilities, and at home P.T., O.T., Speech, home health, etc.. In April, he was ready to receive the second part of the surgery. Two weeks later, his DBS was turned on. It is nothing short of a miracle! It took away his dyskinesia (most haunting symptom, ruined several prs. of shoes over the yrs, due to rolling over his ankle, and yes, we tried botox, but it did not work)! It also took away his tremor, his bradykinesia, his soft speech, etc. He has had it for at least 15 yrs.. He also fully gained his abilities to raising out of bed (on his own), out of a chair or couch, fully able to dress, button, zip himself, including the one arm of a coat. His fine motor skills for typing improved. And most surprisingly, he lost his urgency to urinate; and was able to function normally without any accidents or no longer need a urinal to supplement.  The brain bleed had advanced his Parkinson’s 10 years ahead. Not only did the DBS get him back to baseline, but it also set back his symptoms by an additional 5-10 years; as what we had originally hoped. DBS is miraculous and wonderful, despite the early setback. Praise God!

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