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Are YOU Considering Whether or Not to Have Deep Brain Stimulation?

Are YOU Considering Whether or Not to Have Deep Brain Stimulation?

The question: To DBS, or not to DBS?

Shakespeare may have been contemplating graver issues. However, if you or your partner are considering whether or not to have Deep Brain Stimulation for Parkinson’s disease, I understand your predicament! I want to hear from you! Why? Because, it sure sounds scary, and I don’t have PD! But the love of my life does.

Parkinson’s disease announced its arrival in my house in 2008 when my strong, young, handsome Dan Hott was diagnosed. A father of four, Levi (2), Isaac (3), Violet (8), and Caity (18), our long awaited Hott family was complete. Except for the final addition of a crazy chronic, neuro-degenerative illness that made his left side immobile, drag his leg, freeze his hand at the hip, and my mom think he was perpetually intoxicated.

Over the last ten years, I can’t tell you how many times I have heard someone say, “How’s Dan? You can’t even tell he has Parkinson’s disease! He really looks good!”

I always respond, “Are you kidding me? No! He doesn’t…

…he looks hot!”

Fortunately, a regular regime of levodopa helps. Tweaked daily to account for all that life throws at a dad living on a mountain in West Virginia with Parkinson’s, drugs have managed his symptoms. He appears somewhat ‘normal’ (whatever that means) on the outside.

Parkinson’s is progressive

The inside? Well, that’s a slowly changing story. Doctors say that “Parkinson’s disease is progressive: It gets worse over time. The primary Parkinson’s disease symptoms – tremors, rigid muscles, slow movement, and balance issues – may be mild at first but will gradually become more intense and debilitating.”

What? Not my Dan! We have plenty of time! Any such incapacitating symptoms were ages away. Well, those “ages” quickly blurred into one quick decade. Before we knew it, Dan was undergoing an exam where he was evaluated entirely off his meds for DBS, or Deep Brain Stimulation, surgery!

Deep Brain Stimulation

Surgical therapy – Deep Brain Stimulation

Soon, we tele-met the surgeon, Dr. Kathryn Halloway from the Richmond VA Hospital. Her image appeared on a monitor as Dan sat in the chair, waking up a camera mounted above. She would drill holes in Dan’s head and insert probes to improve his mobility. We were so excited about the possibilities of life symptom-free! Nearly convinced that a DBS would improve his quality of life, I wanted one too! With just a few details to consider, Nurse Miriam would be calling within a month to schedule surgery for later this spring.

While waiting for Dan’s meds “to kick in” for the next evaluation, Dan asked me, “What do you think I should do?”

On one hand, the notion of being symptom-free makes all the risks involved seem completely easy! On the other, meeting a neurosurgeon via video sure was freaky. They would arrange for us to undergo final evaluations at the hospital prior to his surgery; but, on the whole they indicated that by June, Dan would be walking symptom-free for our family trip to see Hamilton in NYC.

“What should I do?” – YOUR advice!

Now everywhere I turn, I read about risks related to DBS. From loss of speech, bleeding, infection, to memory loss…it scares the hell out of me!

Tell me, if you have Parkinson’s disease and have had DBS surgery, what were the issues that led you to decide either to proceed or to continue with prescription therapy? When you heard your neurologist say, “Your PD symptoms can now be best treated with DBS,” what did YOU do?

We’d love to hear your comments! We need to know, “to DBS or not to DBS?” That is the question.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • AngieHott author
    2 years ago

    Hi @kelly-weinschreider!
    You are so inspiring! Thank you for sharing your DBS experience with me. I have told Dannypoo all about our conversation. There is so much to consider. For now, he continues to adjust his meds as his symptoms vary with daily activities. Also, the issue about his ICD remains a concern about placement of leads. Please keep me posted about your DBS and any changes you notice. I was wondering about your battery? Chatting with @annab67 earlier about the battery replacement procedure. You know what, I kinda didn’t consider that….each, a DBS and an ICD, would require this regular maintenance, right. In a way, I continue to pray that a treatment/or/cure will come up that is way less scary than this crazy brain procedure.
    Thank you for touching base with me!
    love, a

  • macpac
    2 years ago

    Hi, I am Mike,
    Interesting discussion and first time commenter. I am 66 retired gastroenterologist with PD for five years. Limited tremor but all the other non movement issues. My neurologist who is an exceptional researcher initially said 3 years ago around 70 I would be a candidate, and keeps moving up the time to consider. Part of that is that these devices have been put in over 250k patients and usually help. So, they are putting them in sooner. They are not a cure and you still have to take meds, but the response to severe tremor can great. Other issues including dementia is a no go…The workup can take a year so plan ahead and get it done, because you won’t get done overnight. Lots of baseline testing including going off meds for 1-2 days. The surgery is kind of wild as you get “burr holes” at base of brain both sides, and then they wake you up and try to match the wires probes with you response to turning on the stimulus. If stable after this they will place the transducer under the skin at later time. I’ve had acquaintances tell me during the procedure you can “hear or feel” your brain working… Of course the usual possible risks included as prior. I’ve seen a video of DBS being done on Davis Phinney, and really helped him. I’ve met a PD patient who had one of the first ones placed about 18 years ago. Can you imagine the desperation and courage he was going through to get this done. The bottom line for me will be failure of meds to allow me to do things I want to do. Of course I need the year to set all this up. Plus, remember the other trials and all these devices tend to get better with time. My neurologist research has to do with mapping the brain to place the wires in the right place. I also may not be able to have MRI due to spinal fusion. Good luck and feel free to send any comments or questions. I am part of the APDA of Iowa speakers bureau. Mike

  • AngieHott author
    2 years ago

    Hi Mike!
    Welcome to ParkinsonsDisease.net! Iowa? My cousin is from Iowa! Thanks for reaching out about DBS.
    NO! I sure can not imagine 18 years ago when the first of all those 250K DBSs were placed…wow. You are SO right; desperation and courage! Oh dear, to think how the thought of DBS freaks me out, I can’t even imagine (and I am a care partner).
    The process for approval has been a long one for us as well. The appointment off meds was certainly eye opening. PD symptoms suck, don’t they?
    Dan and I advocate for funding for research also. So, I honestly hope for better treatments over time, like you said. DBS, although sounds so promising when talking to the neurosurgeon, also has its risks (but so do other procedures, right?) For us, the issue of the MRI is a deal breaker.
    Overall, we have met many wonderful people along this journey who have been very helpful along the way. Initially, Dan’s neurologist at the Baltimore VA indicated that he would want to consider DBS after exhausting meds, which he predicted five years. It was exactly that. Hard to imagine another five years.
    We are getting ready to go to Hill day to encourage legislature to fund research. With a daughter about to go off to school at Columbia for neurology, I pray that better treatment/meds will be revealed.
    But sometimes it is not soon enough.
    Best of luck to you also…and please keep me posted on your DBS adventure too!
    angie

  • Bella
    2 years ago

    hi, i am new to this website and i signed up specifically to respond to your question. i was diagnosed six years ago and to this date, most of my friends and work colleagues still do not know i have PD! however, it gets harder and harder to hide it. why i try to hide this disease is another story but suffice to say i have and still do research every bit of news regarding PD.

    i have participated in 2 trials, PDzone Pioglitazone and PPMI and am currently in a 3rd small one right now; Atlas-PD by weill cornell medical college in nyc.

    in answer to your question about DBS – have you read the very recent news regarding Voyager Therapeutics success in their phase 1 gene therapy trial of 15 pd patients? they posted positive results for this trial which will have genes inserted into the putamen part of your brain to instruct the production of the AADC enzyme to start converting levodopa into dopamine again. what’s more is that the patients were told to decrease medication during the trial and it seem to have worked with no adverse effects!

    voyager is going to start a clinical trial mid-2018 mostly for people who are not responding to medications anymore and for those who are considering DBS. those are some of the inclusion criteria. the only reason i am writing is that they might -EXCLUDE- those who have DBS already in their trials.

    i think you might want to look into this trial before having your husband take the plunge into DBS. he waited 10 yrs already; what’s a few more months?

  • AngieHott author
    7 months ago

    Hello Bella,
    Thanks for reaching out! Dan is still without a DBS. The decision to wait was because he also has an ICD, internal cardiac defibrillator. His original device was not MRI compatible. Although the neurosurgeon said the procedure could be performed without MRI, they also said that better results would like be achieved with an MRI compatible device. At this time last year, his battery had 11 months remaining. And, ironically, they just replaced the ICD three weeks ago and just yesterday the VA called about his interest in a DBS. So here we are again!

    Thank you for your sharing info! I have heard a little bit about gene therapy. The PD researchers meeting sounds super interesting! Please let me know what you find out! I look forward to hearing about these researchers!

    Let me know, ok?
    angie

  • AngieHott author
    2 years ago

    Hi Bella!
    Thank YOU so much for your message! And, welcome to ParkinsonsDisease.net! I’m super new here too. I just want you to know that I really appreciate your post. Dan and I are grateful for both our honesty and info.
    Some of the meds/drugs you mention I have heard about, yet there are some that are new to me also. I am always eager to learn of new information and to share this with Dan. He, too, researches a great deal online. I have not heard of the Voyager Therapeutics…no adverse effects! Wow…. We will be taking a look into this trial for sure. Hopefully we can find something available. Thanks so much for the tip!
    Currently, we are feeling that the risks for the DBS are too great. The procedure for him is complicated by the fact that he also has an ICD that is not MRI compatible. Although the surgeon says she can implant the DBS without MRI, we would prefer better and safer results. Like you said, we’ve waited 10 years already, right?
    Your suggestion sounds very promising! Thanks!
    Also, thank you for sharing with me! And I do hope it is not at the risk of revealing your story…LOL! I would love to hear more, myself. As Dan’s PD is hard to detect on the outside, I can relate to how difficult it is on the inside.
    Keep on reading and researching….and please let me know of “new news” too!
    love, a

  • Bella
    7 months ago

    hello! i’ve been meaning to ask you all this time if your husband had DBS? i’m sure by now you have read all about the phase 2 gene therapy trials by voyager therapeutics, right? also, there is another gene therapy trial going on in cambridge, uk by axovant – Phase 2 SUNRISE-PD i might go there next week to attend a 3hr update meeting by the world’s leading pd researchers; roger baker, jun takahashi, malin parmar, lorenz studer, etc. i hope and pray for continued success in their endeavors!

  • Gabro13
    2 years ago

    Funny I came across this post. I am from Toronto, Canada. I go for another evaluation this Wednesday at Toronto western hospital. Up till a few days ago I was so pumped up and at the point of putting pressure on them to get this done. As I get closer to my appointment I’m getting nervous about the thought of this. I am at the point where I am so tired of the tremors in both hands and arms and legs. The slowness is also becoming more of a problem. There is a person in my rock Steady boxing class who had it done 6 years ago and says it was the best thing he every did and it changed his life.

    I had a laugh when you mention about people saying how “how is dan. You can’t even tell he has PD. He looks so good”. I hear this at least 3 times a week. I always joke that I had to get Parkinson disease in order to look good.

    I’m 52 now and I think I don’t want to wait any longer. I don’t want to give up what I hope what could be at least 10 good years with my wife and kids before this Pd takes more from me. I wonder if you have to go into this with the mindset that in any operation (big or small, complicated or easy) anything can happen. If I wait till I’m 60 or more then get it done and fine that it was a huge success I don’t think I could fore give myself for wasting all those years suffering like this. I know it’s not a cure but I’m looking to buy more time.

    I wish you and your husband all the best. It’s a tough decision . This just how I’m looking at it.

  • AnnaB67
    2 years ago

    Hi all, I’m new here. My husband Marc was diagnosed in 2005 with young onset Parkinson’s He had just turned 40. In 2010 he had the DBS stimulator implanted. We got the 9 year Medtronic system. We have never regretted that decision. At one point he did not charge it properly and found out the hard way just how much the stimulator did for him. While it was turned off he couldn’t accomplish the simplest tasks. He has been able to lead a next to normal life with the DBS. He recently had his battery changed to a new system that was just approved in December. It’s by Boston Scientifec. In Europe it is authorized for a 25 year life span, the FDA has only authorized it in the US for a 15 year life span. If anyone has heard any info about this system I would love to hear about it. We are having adjustment difficulties with the new system.

  • AngieHott author
    2 years ago

    Hi AnnaB67!!!
    I remember reading about a new DBS system. Does Marc have a “Vercise”? I think I saw some information about that because it was close to the time my husband, Dan, had appointments with the neurosurgeon about his DBS approval.
    Currently, Dan is reconsidering getting his DBS. He has some heart related issues to address because he also has an ICD that needs a replacement battery soon.
    For me….well, one biggie at a time! LOL!
    Thank you for your comment. It is kind of you to respond! I want to research more about the 25 year life span…because I now am curious if that is something available for other devices too (ICD’s).
    Your experience when Marc’s DBS was not charged properly and you saw just how much he benefited reminded me of another friend we know who had a DBS. He would turn it off to demonstrate at youth group and show the teenagers how the technology made a difference in his tremor.
    My husband has rigidity, no tremor. What about Marc?
    Again, super nice to hear from you! Hoping the adjustment difficulties get all worked out with his new system. Let me know how it goes!
    love, angie

  • AngieHott author
    2 years ago

    Hi there Gabro13!
    The doctors also told Dan that a DBS would offer about 10 years of improved symptoms – a prospect that sure sounds fantastic! We, too, have kids who are now in their teens, and one 28. Weighing the possibilities of being “normal” again and enjoying life symptom free sure sounds awesome, right?! I can certainly relate to your desire to enjoy your children and be there for them with physically health. Wow…just.wow! Right!?
    As a big chicken myself who is a huge wimp even when it comes to a shot, DBS surgery sounds so scary to me. You bring up an excellent point that with any operation, anything can happen…including great success!
    And, regardless of your decision, I am sure you will still look good!
    Thank you so much for your kind words. And, please keep us posted how your appointment goes on Wednesday! We’ll be thinking about you! Be strong!
    love, a

  • Gabro13
    2 years ago

    Hello AngieHott .
    I had a good appointment yesterday. They feel that we would be at a good time to go ahead with DBS. They will get in touch with me in couple weeks to make an appointment to start cognitive testing and levodopa challenge test. If that goes well then they will set up appointment for the actual DBS. I’m still looking at 10 months to a year before it’s done. That’s fine as it gives me more time to process everything. In the meantime we have made some increases with my sinemet .

    Thanks for your reply the other day. Good luck to you and Dan with your decision. I hope to see an update in the future.

  • jeanita
    2 years ago

    My husband has had two DBS’s. His first bilateral DBS was done in 2008 and majorily improved his quality of life for maybe three years or so. Even after the 3 years the DBS was still contributing yo his quality of life. We did not realize how much benefit he received until one of his stimulator went out. In the past we had often wondered about its benefits; then we discovered how much good. We had seen Movement Disorder Specialists at Baylor College of Medicine in Houston and they were wonderful. The DBS programmer was great but Houston is a four hour drive from Waco and Scott and White in Temple had a neurologist who programmed DBS’s. This neurologist did make conservative adjustments to his DBS. Then about three years ago S&W hired a Movement Disorder Specialist and our neurosis sugguest that we explore a DUOPA with the new doctor. The first time we saw the new doctor, he began programming his DBS differently and we were seeing improvements. The MDS began talking with us about a DBS revision. End of December 2016, his first DBS was removed and January 2018 a new DBS was implanted in a different area of the brain.
    What a miracle! My husband’s was using either a power chair or wheelchair for mobility. His cognitive processes improved, his speech improved, his mobility improved. He spent two weeks in inpatient rehab; this rehab helped some but the therapists there were not familiar with PD. Later he did outpatient rehab with therapists who were familiar with PD. He is walking with assistance of a U-Step walker; the power chair is parked in a closet. We now have a MDS in Waco and my husband’s quality of life is so improved. There has been so many improvements in meds, treatment, etc for PD. A few Parkies have commented to my husband that he is their inspiration and will get the DBS when they need it. My husband will come teary eyed when he talks about his new MDS. My husband was diagnosed either in 92 or 93 and we had lost hope for any significant improvement in his quality of life. I hope that this helps you make your decision. Good luck!

  • yosuico
    2 years ago

    How brave and promising. It seems like a risk worth taking. Would be good to hear people’s real life experience. God bless you!

  • AngieHott author
    2 years ago

    Isabella!!!!
    How are you??? Dan has decided to not proceed with the DBS for now. Many risks seem overwhelming at the moment. Also, he has some ICD issues that need addressed.
    Great to hear from you! I LOVE seeing your updates! Please let me know if you are ever back in WV!
    love, angie

  • KellyW moderator
    2 years ago

    Hi Angie! I was diagnosed at age 29 in 2002. I did pretty well for many years and had more non-motor issues (gastroparesis, sleep issues) than motor issues. In 2016, I realized that I was starting to isolate myself. I didn’t want to make plans for an annual girls’ weekend that I have attended for over 20 years. My medications were no longer working as well as they had in the past. I was not living my life at age 44. I went through all of the tests and was determined to be a good candidate. The surgery, to me, was not fun, per se, but it was one day to get through for what I hoped was a relief from some of my symptoms. I would not say that DBS will leave you symptom free. It definitely helps but it has its own challenges. I was extremely sensitive to the amount of meds and the added stimulation, so it took a while to find a balance. Overall, it took about 6-8 months to get the program right. In my opinion, it has been well worth the time and effort. I have had great relief from tremors and have been able to reduce my medications.
    Good luck with the decision process!
    Kelly

  • AngieHott author
    2 years ago

    Thanks! DBS does offer so many promises, you are absolutely right! And I hope to hear more real life experiences too. And, as we need to work out some issues with Dan’s ICD, we will be holding off on the DBS. We learned that the probes may be more accurately placed using MRI, which his current ICD is not compatible. This presented some tough decisions. It is SO good to hear from YOU!!!! Love you!
    Angie

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