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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.

      • #24874
        Denise
        Participant

        As it should, and as it did for myself and my husband. My husband had a PD diagnosis for 15 years before we submitted to the possibility of DBS surgery. We were formerly in the camp of “never”, that is, until his dyskinesias seemed out of hand and he was losing the ability to be stable on his feet. I recommend NOT waiting quite that long to get the surgery, because as others have stated, “it gave him his life back.” And I will tell you, it was not without the risk; but we’d still do it again, despite my husband falling into the category of the 1% who experience a brain bleed post-op. He came home well after the implantation of the electrodes in his brain, doing well, but within 24 hours, he had 2 staring seizures; and I knew something was wrong. He was in the ICU, the reg hospital, in-patient facility for two more weeks for all kinds of therapy and then 6 weeks of therapy at home. Still, when time allowed healing, we had them implant the pacemaker-like control center of DBS. Two more weeks after that, he got his life back and we had accomplished what we initally set out as our goal, to turn back the clock by 10 years on his undesirable symptoms.  If a patient waits too long to have the procedure, then there exists the possibility of dementia symptoms setting up, and you will NOT pass the cognitive tests; thereby disqualifying yourself as a possible candidate for getting the surgery in the first place. My recommendation is, if you are in good health otherwise, and feel strong and have a clear mind; go for it. Just make sure the surgeon provider has done at least a thousand or more of these, and has a good reputation. I highly recommend this procedure to all my friends with Parkinson’s. I only wish they were all candidates to get it. Do not wait too long. The benefits far outweigh the pitfalls, in the long journey of Parkinson’s. Just do it! God bless.

        • #24896
          Marlyne Wilder
          Spectator

          I considered DBS and had my MDS send the informational packet (46 pages).  After reading it entirely I decided it’s not for me.   I may change my mind later.

      • #24990
        John Sanchelli
        Participant

        I was very scared initially about having DBS surgery performed; however, I spoke to everyone I knew (and many I did not know) about having the surgery to allay my fear of going through it.  The thing that I feared the most was having screws placed in my skull to help guide them to the right place to insert the electrode.  As I talked about it more and more, the fear dissipated and I soon after had the surgery.  For all who are deemed candidates by a team of doctors, I believe they should seriously consider having the surgery done.  I had the surgery about 6 years ago and am glad I did.

    • #20522
      Regina
      Spectator

      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.

      • #24929
        Mary Beth Skylis
        Moderator

        My dad felt that way at one point too. But after his symptoms got bad enough, he decided it might not be such a bad idea. I know it’s not for everyone, but we’re really grateful that he got the procedure.

    • #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.

      • #24930
        Mary Beth Skylis
        Moderator

        Wow! That’s quite a bill.

      • #25016
        ROBERT SUTCLIFFE
        Participant

        Jack Edmondson , FUS is a procedure which burns permanent hole in your brain. Any future, presently unknown, treatments or cure for Parkinson’s will not work. The brain has been permanently damaged.  When I asked my neurologist about it, he emphatically told me he would not ever endorse it for those reasons.
        However, he did recommend me for DBS. I read everything I could get my hands on and talked to several people. I eagerly moved forward with it 18 months ago. Had it done on the right side of my brain. It improved my quality of life almost immediately.  I’m 75, was diagnosed 8.5 years ago. I used carbadopa levodopa almost from the start. After about five years I started with dyskinesia. Having off times frequently and lapsing into dyskinesia frequently, as well. So, I went for DBS, which has improved my tremors and dyskinesia by 90 percent.  And, I reduced my meds by 40 percent. Unfortunately, the disease has advanced on my right side, so during the next year, I’ll have my left side done. Folks, for me it’s purely a quality of life issue. I wasn’t that bad , but dyskinesia and tremors were very annoying to me. I was fully awake throughout the surgery and watched it on a screen right in front of me. There was 10 minutes of discomfort when they put the halo on. Ladies, how many hours of pain do you go through in childbirth?  Anyone can get through it. Just relax and breathe deeply. Drilling the hole in the skull is very loud for two minutes. When I think about the surgery that I’ll have again, I don’t think about the short uncomfortable moments of the surgery. I think about postponing a walker, a wheelchair, and avoiding the nursing home.  Even if it doesn’t change the time frame for these things, it’s about my quality of life until I get there. The risk of infection or hemorrhaging is less than two percent. But, first you must qualify. It’s a lot of cognitive,  psychological, and physical testing that takes about six months to get through. Then, the waiting list of up to six months. Also, find a great surgeon who specializes in DBS and is experienced. Well, I’m looking forward to my next surgery.  It’s not for everyone, so do the research and have confidence in the science.

    • #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.

        • #24894
          Bert Shure
          Participant

          My understanding is that DBS is good for tremors, especially if the usual meds aren’t helping.

          My two top issues are cognition and constipation. My tremor is controlled reasonably well by Rytary.

          I have heard that DBS does not improve cognition and might hurt it.

          Good luck!

        • #24931
          Mary Beth Skylis
          Moderator

          When my dad was going through the procedure, they asked which symptoms he wanted to target the most. He was able to significantly change the severity of his dyskinesia. So, I know that it can definitely help with the physical symptoms. But I’m less familiar with the cognition — like you’ve so aptly pointed out.

      • #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

      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

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

           

    • #20558
      Kate Rodrigues
      Spectator

      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
      Spectator

      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. .

      • #24801
        Mitchell Niese
        Participant

        Sabine,

        The 2 programs are interesting. I just had DBS in April 2022 and it works great on my tremors, which is my main complaint and i stopped the programming session when the tremors stopped. I was so thrilled with that! But I would like to improve my ability stride with my right leg and I’m going to look what they can do with that also.

        Your husband must have a sharp mind, I would of hated to see my programming work the week of the electrode placement. I sounded like a drunk for a few days.

        Mitch Niese

         

         

        • #24802
          Sabine
          Participant

          Mitch,

          The first two weeks after programming my husband walked like a stork. I was worried that his DBS was not done correctly but after 2 weeks everything went back to almost normal. I guess the brain had to adjust to the stimulation.

          Now, over a year later, he still goes every 4 months for more programming. The tremor in his left hand did not completely disappear and they still try to get it better. It seems that when the tremor goes away he has an issue with his leg or speech. Since he is right-handed it doesn’t bug him too much.

          By now he has 3 programs, the first one they did, his special hiking program, and the one with the latest programming. He did not change his latest program anymore and did some strenuous hikes in our beautiful Colorado high country.

          Next week we want to try hiking with his first program since we both notice that he leans more to the right after his last programming session. Maybe something that works for his hand is not so good for his pasture.

          While DBS is not perfect, his quality of life is so much better. He only takes 1 to 2 Levodopa pills a day compared to 9 before DBS.

          Best of luck to you

          Sabine

           

        • #24893
          MattR
          Participant

          Sabine:
          Thank you so much for sharing you husband’s experience with using multiple programs. I am wondering if you would mind commenting on which DBS manufacturer your husband selected. As noted elsewhere there are currently three available, but I am not sure if all manufacturer’s support and allow patients to switch from one program to another.
          best regards,

        • #24997
          Marjorie Weiss
          Participant

          My husbands devices are from Medtronic and he can have more than one program. He usually sticks with just the one.

        • #25025
          JB
          Participant

          So many incredibly helpful posts on here. My husband had DBS in 2012, it changed his life as well.  He is 60 now, so young PD when he was dx.  He has barely ever had tremors, and he had DBS to the GPI part of the brain, which helps more with dyskinesias we were told.  Not such a downgrade in medications.  We feel he has more falls now, but this could easily be progression as DBS does not help gait.   He didn’t like particularly the operation itself, but he wasn’t in any pain whatsoever throughout.  He also has Medtronic implants, and a Boston Scientific rechargeable battery.

    • #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!

    • #24816
      Marjorie Weiss
      Participant

      My husband is a long-timer with DBS. Left brain was done in 2007; right brain done in 2009. He continues to have marvelous results from it. Meds NEVER helped him but this saved his life. A previous poster said DBS does nothing for stiffness but that has not been his experience. It loosens him up considerably.

      Just last month he has it tweaked so that his right arm could swing again and get looser.

      He has had PD For well over 20 years and still most people would not know he has it since he looks and acts fairly normally. Close up, of course, one can tell something is “off.”

    • #24875
      Jon Busch
      Participant

      A surgeon who does DBS told me “Ït’s not all it’s cracked up to be.” This was quite surprising as I’ve heard nothing but good things about the procedure.

      • #24935
        Mary Beth Skylis
        Moderator

        That’s a pretty odd thing for a surgeon to say!

         

    • #24878
      Norm Replin
      Participant

      I am scheduled for the DBS surgery in November. I was diagnosed with PD in July. 2010–age 60.  I have researched the procedure and spoken to a number PWP who have had DBS. I feel confident in the surgeon, programmer and hospital team….and yet,I am still terrified!

      I will update my condition for all of those readers contemplating the therapy or who have questions.

      • #24993
        Mary Beth Skylis
        Moderator

        Norm, I’d love to follow along with you on your journey. Are you feeling anything other than terror? I know my dad worried a lot — even for a few weeks after the surgery. But we’re all really grateful that he chose to get the surgery.

    • #24897
      Christine
      Participant

      I have had DBS. I got it last year at age 60. I was diagnosed at age 54. My worst symptom was tremor, and that has basically been resolved, except for my legs, but my neurologist said if she adjusts so that my tremor is completely gone, it will affect my voice. Right now, when I’m tired especially, my voice goes very soft and I sound sort of drunk! My life has changed dramatically since DBS – I recently signed up for an art course, and a dancing course! I have way more energy, and people aren’t always asking me if I need help. I feel way more ‘normal’.

      I have quite a few friends that have had DBS, with varying degrees of success. I think it is important to have realistic expectations. My neurologist said they have the most success with treating tremor.  Also important, get back on the exercise train as soon as possible after surgery!

      Good luck to everyone who has a surgery coming up!

      • #24913
        Marjorie Weiss
        Participant

        Good to hear about your positive result

      • #24994
        Mary Beth Skylis
        Moderator

        Christine, are you doing anything to try to fight the voice softness? I’ve heard of some people taking singing lessons or doing vocal training to maintain some vocal power. My dad struggles with this symptom, too. And I know he has to make a conscious effort to speak up, or we don’t always hear him.

        • #25011
          Marjorie Weiss
          Participant

          Look into the LSVT Loud speech therapy for PD. It helps.

        • #25031
          JB
          Participant

          Mary Beth, my husband is really badly troubled by soft voice.  LSVT he has done and it hasn’t helped him at all.  I think he probably didn’t put enough effort in with it, but he is only just turned 60 and had PD for 25 years now since dx.  He can certainly sing loud and speak out loud when he puts major effort in, but as soon as he goes to converse its back to less than 40db.  It’s impossible.  I spend my days asking for repeat, speak up… it’s incredibly frustrating for us both.  We do speech training at home every day, but so far nothing really helps alot I’m sorry to say.  DBS we found at first helped with tweaking the Groups, but now not so.

    • #24901
      Ted Wilton
      Participant

      Our youngest daughter, who is 37, had the surgery earlier this year, and it turned her life around, essentially it has been a miracle for her. So many of her symptoms are no longer active, and the reduction in her medications has been significant.

      I had been skeptical of its benefits, but in her case I was wrong. My PD is less pronounced than hers was, but if I ever get to that point, I will reconsider my earlier objections to it.

      • #24914
        Marjorie Weiss
        Participant

        Don’t wait too long because if you begin to have cognitive impairment you likely will not get approved for it.

    • #24911
      George Sharp
      Participant

      i can understand his concern it seems to be the expectation that it only lasts for a short time so i can think that the getting ready to have this type of operation must be a bit daunting, just the thought that your awake and are Abeal to hear what is happening to me is a pretty scarey thing so i can understand his worry that though he is well now it may not last, it would be a last sort thing a person like me wouldn’t mind having done .
      I think that deep inside he has these thoughts, i don’t blame him at all.

    • #24912
      Cap Sage
      Participant

      No thanks! I am appalled at the lack of serious research into the genus of Parkinson’s. While I appreciate attempts to relieve victims of Parkinsons’ horrific symptoms, of which I am all too painfully familiar, I much prefer the goal to locate and resolve the origin of Parkinson’s, which will ultimately lead to prevention and cure. There are some purported “successes” using DBS, but my 7+ decades of experience, including search, research and investigation have lead me to utilize surgery and drugs as last resorts, or in some cases, to avoid them notwithstanding the resulting pain and veritable torture.

      • #25007
        Mitchell Niese
        Participant

        Cap,

        Enjoy the “pain and veritable torture”, while I take any and all relief offered today to live long enough to enjoy the cure.

        Mitch

    • #24915

      I had DBS, not as a last resort but as a quality of life issue. Before DBS here are a few questions I asked myself. How did I want to live my life? How would I fight this disease? Did I have realistic expectations?

      I wanted to live as healthy a life as I could as a PWP. I chose DBS and it was the correct choice for me. I no longer have any tremors in my arms, legs, or head. I still take meds three times a day, a half to a whole tablet of Carbidopa/Levodopa. I went for the Loud (speech) program and Big (physical therapy) program immediately after being diagnosed at the advice of my PA. I also started Rock Steady Boxing, also at the advice of my PA. I still go to my wonderful speech therapist for “tuneups.” Speech seems to be my weakness. Is it because of DBS? I’ll never know because even before DBS I had changes in the amplitude and quality of my voice, and as we all know nothing stops PD from progressing. That is except exercise. So I enthusiastically continue with RSB four times a week with one day focused specifically on strength training. Other days I clean my own house, do laundry, tend my garden, attend bible study, and of course spend time with friends and family.

      Do I still have slowness and stiffness? Yes. Some days more than others, but so do a lot of people my age. I’m 68. But all in all, life is good and I thank God every day for DBS and my first PA for leading me to the life I have.

      • #24919
        Marjorie Weiss
        Participant

        Such an wonderful response for you.

    • #24916
      nancy
      Spectator

      Does anyone know why one has to take PD meds after they have had dbs?  Also, I learned from a webinar that they normally do not perform dbs on people that live alone because speech impairment and cognitive dysfunction is a side effect of the surgery.  Can anyone shed some light on this for me?

      • #24920
        Marjorie Weiss
        Participant

        My husband went many years after his DBS in 2007 and 2009 without taking any medication. He did not need it. He does take carbidopa levodopa now in a very small dose.  Neurologist, however, he’s not certain that it helps him right now at all since the GPS does most of the work.

      • #25014
        Mitchell Niese
        Participant

        Nancy,

        The need to take meds after DBS would be because of the type of symptoms, the severity and how symptom free you want to be. I get along w/o meds 95% of the time but when I golf I take a levadopa to get the last 5% of the tremor that arises in stressful situations. Some symptoms are just easier to control with DBS.

        I’ve never heard about living alone to be a deal breaker except immediately following surgery; you will need someone to stay with you then. The voice on cognition risks, they can be mitigated with programming or as last resort just turning it off.

    • #24918
      Andrew L.
      Participant

      I have a medical background and am not afraid of the surgery per se. I am about 4.5 years in, and while my quality of life is better than most, I am strongly considering undergoing the procedure proactively before I deteriorate further. Note: Am now up to 1 C/L  25/100 every 3 hours pretty much around the clock with occasional rescue doses when vigorously exercising. My understanding is that DBS is not meant to replace medication, just supplement it. I believe current thinking is to not count on cutting back on your meds at all after DBS, but to just expect a reduced likelihood of dyskinesia from medications. DBS is not meant as a cure, but helps certain symptoms improving quality of life. Speech impairment generally manifests as a quieter voice (most require speech therapy), while cognitive impairment most commonly manifests as difficulty coming up with certain words when trying to express yourself. I believe your baseline cognition pre-DBS also influences the cognitive outcome.  Both adverse effects (speech/cognition) are thought to be more common when one gets bilateral vs. unilateral treatment. If anyone disagrees with what I have written, then please inform me as I am not a neurologist.

      • #24921
        Marjorie Weiss
        Participant

        My husband went many years after his GBS surgery without taking any medication.

      • #24927
        nancy
        Spectator

        Thank you for your quick response.  I am glad to hear from someone who knows more about dbs and will tell me things that my neurologist has not shared.  It seems like the drs. I have spoken with about dbs ‘gloss over’ the risks of the surgery but don’t tell you exactly what improvements would be realized by the surgery.  If the only benefit is reduced dyskinesia, I think I will pass on the surgery. The people that I’ve met and have had dbs surgery have a speech pattern that makes it very difficult to understand what they are saying even though their voice is loud enough.  To me, the risks of the surgery outweigh the potential rewards.

        • This reply was modified 1 week, 4 days ago by nancy.
        • #24936
          Marjorie Weiss
          Participant

          The speech issue is very interesting for me to have learned. Fortunately my husband has not had that issues, although the electrical signal can be changed so that he cannot speak at all. (He had a neurologist who thought that was fun to have done to him one day.! We don’t see him anymore.)

          He had success with it controlling tremor and reducing stiffness. He did not have dyskinesia in 2007 or 2009 , the years of his surgeries, and only has gotten it in the last year or so when he takes carbidopa levodopa .

          He had the surgery at Jackson Memorial/University of Miami.

           

        • #24939
          Mary Beth Skylis
          Moderator

          Nancy,

          Thank you for your input. Yes, everyone is different. And I’m sure the surgery isn’t right for all people with Parkinson’s. I’m grateful that it turned out to be a positive procedure for my dad. He significantly decreased his Levodopa dosage afterwards.

          I hope you’re doing well!

    • #24966
      Fran W
      Participant

      I’m just beginning to research DBS.  My concern is that, since  there are so many known side effects from the medications (Carbidopa  Levodopa  etc), what advantage is there to continue experimenting  knowing my side effects are more than likely going to increase:
      <p class=”p1″><span class=”s1″>Constipation
      </span>Thinking problems
      Throat pain/phlegm buildup
      Sense of smell diminished
      Forgetfulness
      Sleep problems, strange dreams
      Painful leg cramps</p>
      Why delay DBS when trying even more medications to hopefully treat some of the symptoms of PD is more trial and error ?  And that is in addition to the many months (years?) of C/L trial and error?  DBS is major surgery yes, but my understanding is that in most cases if totally necessary, it is reversible. The side effects of the medications only worsen with time as will the PD itself.

      Since I am only beginning my research, I would really appreciate input from others on these  thoughts.

      • #25015
        Mitchell Niese
        Participant

        Fran,

        Your reasoning is very sound. You are listen and learning but remember no 2 people have the same Parkinson’s or the same desires. Your doctors should give you straight advise, much better than our antidotes. Trust whatever YOU decide.

        On a personal note. I had nearly the same questions 6 months ago. Had DBS 5 months ago just 2 years after diagnosis. Heard from people that it was to early; but my desire was to get in front of this as much as possible. I couldn’t be happier with the results!!

        Mitch

    • #25017
      Mark Blinson
      Participant

      I had dbs surgery this spring. Diagnosed 2016. I’m 62. Easy peasy. Much improved. Glad I did it.

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