An Interview with People Living with Deep Brain Stimulation for Parkinson’s (0 - 3 Years)

[@sharonmaplethorpe9168]

Really interesting chat from people who know what they are talking about -thank you 👍

[@debrak6561]

Thanks so much to everyone on the panel who shared their experiences. It’s so valuable for people who are considering this very big decision.

[@larrysimpson6087]

I had the DBS initial surgery on 1/18/23, and that was for both sides. The second surgery to hook up the battery was 2/1/23. My initial programming was 2/20/23. My next programming was 3/7/23. My next programming will be 5/9/23. My thought to anyone considering this procedure is to have your expectations around the time from implantation to programming to completion or major change to be around a year, or so. The hardest thing for me is that most people I know expect that I had this done now I am all better!! It is working, and I am changing, however I now realize that it takes time and to simply be patient and continue to work with my team.

[@sherrymargolis2922]

😊😊😊😊😊😊😊

[@sherrymargolis2922]

😊😊😊😊😊😊😊😊

[@GoProGoalieUzi]

I in the pre operative stages for dbs. I am 45 and was diagnosed at 40. No tremors but I take 23 sinimet per day. My only concern is that I am an athlete. I push myself to the max. After I get dbs I want to be able to push it to the max (same level) as current. I cannot be unable to lift weights and box and mountain bike..I understand that I have to recover..but 🫤🫤🤔

[@NoorMuhammad-qq5kf]

​@@GoProGoalieUzi I have Parkinson from 11 I wanted to know in which and country and how much experience and how much time It will take to cure and what ar the side effects regards haji noor

[@NoorMuhammad-qq5kf]

Please respond

[@lindabenko7893]

Excellent panel discussion. Thanks for offering it.

[@otavjlv]

Hi, folks. I'm Brazilian and i've been diagnosed with Parkinson disease since 2008 when I was 38 years. In 2022 I made surgical procedures to put DBS. I reborn, really. DBS for me it was amazing. My life is much better than before DBS. It is a Medtronic device and the surgical procedure lasts 8 hours, when the first 6 hours I was awake and the last two hours doctors put in my chest the stimulator device. Thanks!

[@davisphinneyfdn]

Thanks for sharing your story! We're glad you had a positive result!

[@triplefoam]

Susan, Amber, Steve, Peter, Doug, Bart and Robynn - Each of you did a fantastic job in sharing your experiences on DBS! Really great stuff here for those considering this option. Well done everyone!

[@marilyntom8790]

Power for Parkinson

[@billwarren8076]

Thank you - very informative to hear of everyone’s experiences

[@splashesin8]

This was very interesting and helpful to know stuff. Thank you all. 😊

[@stephenlimeburner1830]

Hi Robyn, thanks for the tip on positive polarity. We tried it here in Newcastle Australia and it has resolved my speech issues :) my walking and leg strength have also improved.

[@amontoya7475]

Thank you. After living with Parkinson’s for 8 years I’m just starting my DBS journey.

[@davisphinneyfdn]

Keep us posted about how you're doing! We wish you the best, and if we can help, please email us at [e-mail]

[@johnrushford514]

I am getting DBS next month

[@GoProGoalieUzi]

@@johnrushford514how did it go brother ❤?

[@johnrushford514]

@@GoProGoalieUzi amazing off all the meds its incredible! The surgery sucks bad

[@GoProGoalieUzi]

@@johnrushford514 I was scheduled to have it Dec.6th 2023. They attached the frame then I waited for 16hrs. Had a panic attack and it was cancelled. Sept 10th this time they are going to put me out.

[@wilfredohernandez8987]

Excelente. Gracias por compartir sus experiecias:

[@jagbandhumahtha3343]

Very good information

[@terrident4360]

Yes, Robynn they had to switch polarity on mine also and it made all the difference. I had DBS in Nov. 2022 Abbott device. Worked well but when they had to turn on the right side I had terrible balance,problems. Once they switched polarity my balance was restored.

[@ssap3717]

My fathers DBS was a nightmare. He lost his voice, walking, and swallowing ability post DBS. Caught an infection after 5 years during battery replacement and entire DBS had to be removed. He has been bedridden since. They determined it was too risky to put the DBS back. He flew to surgery on his own. I wish we had not done it. Doctors don't even understand how the DBS works and they will blame it on PD progression if something goes wrong. You will be at the mercy of the device and the DBS programmer once its installed. Like a repaired iPhone, you body will never be the same.

[@davisphinneyfdn]

Thanks for your comment. We're sorry to hear that DBS led to complications for your father. While many people have positive outcomes with DBS, others have serious, life changing complications from it. We try to highlight the range of possible outcomes in the DBS-focused content we publish, and we are grateful when people in the Parkinson's community share their stories with us. Please reach out to us at [e-mail] if we may be able to help.

[@Dawnside-g7l]

@@davisphinneyfdnhello madam and sir! I do have cervical dystonia also known as spasmodic torticollis and most of the conventional medical treatments interventions doesn’t help my condition at all and I suffer this disease almost 24/7. based of my theory that I am eligible to have it done this kind of surgery but my big concerns are at first I am sensitive to any surgeries procedure that I had a bad reaction based of my surgery experienced, secondly I have also an existence autoimmune and lastly every time I don’t feel comfortable at any circumstances my panic attacks strikes easily. I would like to try this procedure but my brain tells me that I don’t know if it’s the best treatment options based of my body response! I hope there’s any explanations regarding of my concerns.

[@BennoTheTruth]

Wow that's crazy. Which country?

[@kmiller2157]

I had DBS placed a year,MEDTRONIC ago and when I first got it placed, I loved it now I can barely talk. I can barely walk and there is an anything anybody can do to help me and San Antonio. The pros still outweigh the cons I must say because my life is better without the trimmers I noticed that you had some comments about switching polarity. What is that about? Oh, I would love to be able to talk to walk along with the great benefits of this surgery.

[@davisphinneyfdn]

Optimizing DBS programming can often take a while. Try to keep from being discouraged! Because there are many different DBS systems, the best way to address your device's programming will be through your care team. We're glad the pros still outweigh the cons, and hope you'll be able to talk with your care team soon about possible ways your device can be adjusted to improve the benefits you're receiving.

[@MaryanneTigges]

I had DBS in Australia 29 March 2023. I up until October 23 I was going back to my neurologist for programming pretty much weekly. My neurologist said I had to be unmedicated for the programming and although he would check me about 30 minutes afterwards my condition would change after I'd taken my medication and within hours of the programming. It's been a rollercoaster ride for me. My condition was very unstable until I decided to stop taking the medication I'd been put on post op and I made increased the stimulation myself in mid November. I've been stable since then in terms of most of my symptoms but my speech is still pretty bad and my balance is not great. I have the Boston scientific device. Is this normal? Thanks in anticipation

[@davisphinneyfdn]

Thanks for sharing your experience. We wish that your experience had been better for you. It is not uncommon for it to take a period of months after DBS surgery to recover and establish a stable program and medication regimen. However, given the number of DBS systems and lead placements, along with the variability of Parkinson's symptoms and responses of those symptoms to DBS, it is hard to say that any particular post surgery experience is "normal," even with a lot of information about one's particular procedure and Parkinson's experience. That said, DBS can certainly complicate speech and gait issues in both a short and longer term. We hope that with your care team you are able to continue to tune your DBS treatment and that your experience continues to improve.

[@johndutton3679]

I'm utterly perplexed as to why someone would have highly invasive DBS instead of painless noninvasive Focused Ultrasound, especially now that they can do FUS bilaterally. I had FUS done over two years ago and it was done in the time it takes for a long lunch and I haven't had any Tremors since then. I consider it to be a miracle. A painless one at that! Please enlighten me. Thanks.

[@davisphinneyfdn]

Thanks for your comment. We're so glad to hear your FUS treatment was successful! FUS is a great option for many people. Here are some thoughts as to why someone might choose DBS over FUS: 1.) There is more data about DBS outcomes and risks than there is about FUS. Fewer people have had FUS procedures, and many studies of the treatment have been small. 2.) DBS is a reversible procedure, high-intensity FUS is not. If the target is missed there is a higher risk of permanent side effects with FUS. There is research investigating low-intensity FUS, which may be less likely to cause permanent effects. 3.) Some people can not receive FUS due to skull thickness. 4.) To our knowledge, research is ongoing about bilateral FUS for people with Parkinson's, and although approval has been received for bilateral treatment of people living with essential tremor, we have not heard that bilateral FUS is approved for people with Parkinson's outside of clinical trial settings. Still, there are many reasons to consider FUS. A few notable reasons to consider FUS with your care team include: lower surgical risks, benefit is typically immediate and stable after a single treatment, and the treatment may be a good option for people with multiple other health issues or health issues that exclude them from eligibility for DBS.

[@johndutton3679]

@@davisphinneyfdn thank you for your response. In my case I did my homework and I came to the conclusion that the rewards of FUS far outweighed the risk. My doctor has done over 400 procedures with a high degree of success. The minimally invasive and painless components are what sold me. I was done in 2 hours and it was like a received a miracle. My life changed dramatically for the better and I've had zero tremors in 2 years now.. with no batteries or wires or on/off switches. Needless to say I am a fan of focused ultrasound surgery and wish that my fellow pd sufferers could experience the joy that I received! Thanks.

[@johndutton3679]

See my film Tremor Documentary 2022 which shows my medical Journey and FUS operation start to finish. It's won 22 awards at film festivals. It may change your mind on FUS.

[@johndutton3679]

FYI it is exceedingly rare that a target is 'missed' and there are guardrails in place to make sure that doesn't happen.

[@swanlady0922]

I had DBS there was no pain, I was actually surprised that I never needed the pain meds I was given. I believe that most people considering this procedure do their due diligence after all it is our brain we are talking about. In my case I talked and met with many who had the procedure 5 years ago and those who had recently had it done. I searched the internet for information, it wasn't a difficult one, Islso trusted my care providers.

[@DavidOlsen-e3n]

My name is David a Olsen and I’ve been diagnosed with Parkinson since 2017 my symptoms are getting worse the tremors in the hand and now I noticed in the morning when I’m shaving that the top my body rocks back-and-forth. I don’t start doing this on my own. It just happens. It’s a little annoying now my head moves not as often once in a blue moon my head will rock back-and-forth as well, my doctor is recommending a DBS the medicine. I’m on now is rye Terry I have to speak into the computer cause I can’t type the letters in the tremors are too advanced. I hope you understand what I’m trying to say the regular medicine watch the side effects but for me with my insurance is $1000 a month co-pay so I’m thinking I’m gonna get the done soon after it was done did you resume a normal lifestyle or was there a lot of downtime where you couldn’t drive or do any other activities and the side effects from the procedure? Any help you can give would be greatly appreciated. Thank you again.

[@davisphinneyfdn]

Everyone's experience of DBS is different. Many people have a positive experience of the treatment, but some people may experience extended recovery times, and there are people who never receive much benefit from the procedure. Moreover, while the surgery is generally considered quite safe, there are significant risks, too, even if they occur infrequently. This recent blog post may be of interest to you: davisphinneyfoundation.org/dbs-recovery. Two other notes: Talk with your care team and surgeon about the part of the brain they think is best for you. Not all targets for stimulation are the right fit for each person's symptoms. Understand that, generally, those symptoms that respond to levodopa are likely to respond to DBS treatment. If your tremor used to be managed by levodopa but now responds less significantly, DBS is much more likely to help with tremor than if your tremor never responded to levodopa.

[@rehaozcelik544]

Hi, I am writing from Turkey. I live in a small town on Mediterrenean Sea far away ( 9 hrs drive or 6 hrs of total travel time if you fly) from Istanbul , where we have good quality medical service . I am considering the DBS surgery and having the stimulator programmed in Istanbul . Can the distance create serious problems ? Do you expect any occasion requiring me to arrive at the medical center urgently? Do you have DBS users in the US living 6-8 hrs away from their MDS .

[@davisphinneyfdn]

Thanks for your question. A few things occur to us: 1.) Some providers recommend that you avoid flying within 2 weeks of your last surgery. health.ucdavis.edu/neurology/deep-brain-stimulation/images/PreDBSClass.pdf 2.) This recent meta-analysis discusses the frequency of hospital readmissions following DBS surgery. Multiple studies indicate that up to 5% of people require readmission. : www.ncbi.nlm.nih.gov/pmc/articles/PMC10690827 3.) You might want to ask where the nearest DBS programmers are. Most people see their programmer monthly for 3-6 months, and while some programming sessions may be done remotely in some countries, this is not always the case. Here is more info about DBS programming: www.ncbi.nlm.nih.gov/pmc/articles/PMC5632902/

[@indutejani6292]

My husband is 82, he was diagnosed Parkinson 4 years ago. My husband does not have tremors but he is going through cognitive disorder. Mentally he is not sharp like all the panelists, he will not be aware of anything. He is very forgetful. He is physically ok. He does stationary bike twice a week. Seven miles in an hour, nonstop and goes for Rock Steady Boxing 3 times a week. I think he might not be right candidate for DBS. Any suggestion please? Excellent discussion.

[@davisphinneyfdn]

Hi Indu - The best person to help with that is your husband's medical care team. Exercise is great, so I am glad he is able to do that!!

[@ssap3717]

Dont. My father had it. it ruined his life. he lost his speech, walking ability after DBS. Then, he caught an infection and entire thing had to be removed. He has been bed ridden since. He flew to surgery on his own.

[@BennoTheTruth]

​@@ssap3717How old is your father?

[@lourdescollazo4542]

❤❤❤❤❤ I have Essential Tremors. And I have DBS

[@christinedobson1830]

In case you missed it...

[@stevenholmes414]

I had DBS March 2021. Two weeks after the device was programmed I saw instant progress . No tremors, no need for cane, balance was great. That lasted a whole month then slowly the tremors came back, use of cane and started falling again. My Neurologist adjusted device 4-5 times over the months. Today I have major tremors, speech problems, almost zero balance and confined to a walker. Sorry to say this, but this major intrusive surgery did not work for me. I’m sure it is life changing for some, but life changing for me also.

[@davisphinneyfdn]

Thanks for your comment. We know that each person's experience of any treatment--DBS included--will be unique, and that some people experience better results than others. We hope that your experience will improve in the future Have you consulted with the manufacturer of your DBS system and/or gotten a second neurologist's/movement disorder specialist's perspective on your system's settings?

[@stevenholmes414]

@@davisphinneyfdn Hi, thanks so much for your great response. I never thought of reaching out to a Medtronic rep. for advice..

[@karenestes8364]

It’s not been great for me

[@swanlady0922]

I'm so sorry to hear it hasn't been great for you. This video is almost a year old. Hopefully things got better. 🙏

[@lisamartin4807]

I had my 7th DBS brain surgery in Feb 2022, and I FINALLY have been infectiousn free, I am finally feeling good about the programming, I wish the information that is now available, was available back then, also, I am deeply depressed and can’t seem to shake it, not sure if it is because of the surgeries or if it is from the medication, I KNOW the new medication I started on last December is better (Rytary) I hope that I get qualified for the patient’s assistant program again in December because I might make too much money on disability, which having to go back to generic carbidopa levodopa is terrifying. The dyskinesia was so bad and I don’t have it with the Rytary. I have an awesome MDS my first one was not great but the one I have now is awesome. He listens to me and I do a lot of my own research. I wish I had a better care team that understands PD and could help me with the depression, nutrition, and exercise.

[@davisphinneyfdn]

We're so glad that you are having a better experience with your DBS programming and that your relationship with your MDS is strong. If you haven't discussed your concerns about medication availability, depression, nutrition, and exercise, we recommend you ask them--or their office staff--for recommendations for local resources. You might also check with local or regional support organizations for people living with neurological conditions. Even if the organization is not Parkinson's-specific, they may have local recommendations to help you expand your care team.

[@lisamartin4807]

@@davisphinneyfdn I live in Utah, my care team is primarily at the University of Utah, which is 40 miles to the south of where I live, it’s not that bad, but the freeway is very busy and I don’t like to drive anymore than I have to, do you have any recommendations on organizations in the Ogden Utah area? I will also look myself but thank you for your response. I appreciate it.

[@kmiller2157]

@@davisphinneyfdn. Please tell more about this polar negative and positive. I had deep brain surgery the year and a half ago and it was great when I first did it now I can barely walk. I can barely talk you tired for me to get around to talk to my technician, and he said, he is familiar with the native in the positive polars of the unit. I’m in the process of taking out the battery setting you in setting a new one in its place just so much to say about all this, but please let me know about this negative and positive polar issue so at least I’ll be up to date and will be able to tell if I am getting the proper help

[@jeremykitchin3527]

Stop\ 4:41

[@Cure4pd]

i got depression after my dbs, plus my speech got worse

[@GoProGoalieUzi]

Oh I hope you feel better. A friend had dbs and she wasn’t happy that her voice changed. So her mds said that it’s still early and that taking some sinimet may help. She still loves that dbs gave her life back. I am due for dbs on September 10th 🇨🇦

[@davisphinneyfdn]

thank you both for sharing your story. everyone's DBS journey is different and important to hear all sides of possible outcomes.