As a neurologist, I had the privilege of training at a time when surgical techniques like palidotomies, thalimotomies were in full swing as a means to control unwanted side effects ( dyskinesias) of levodopa treatment in parkinson’s patients. The advent of Deep Brain Stimulation (DBS) revolutionized the care of Parkinson’s disease patients offering hope and optimism and a better quality of life to them and their families.
I spoke to Dr. William Ondo (a good friend and colleague) who happens to be an expert in the field of movement disorders and DBS … and a professor of Neurology at the University of Texas Health Science Center in Houston, Texas.
I interviewed him regarding his views and experience with DBS and latest information on the subject ….I wanted to get a fresh and updated perspective from a neurologist that has over 10 years of hands on experience dealing with patients considering and getting DBS implant .He both examines patients to determine whether they are good candidates and accompanies them to the operating room..his programmer has equal amount of knowledge and training since prior to DBS being approved in this country for ET ( essential tremors) and Parkinson’s in the 1990’s.
As of a year ago, there were over 85,000 people implanted world wide.
Yet, despite the growing number of cases, there seems to be in my opinion a growing dissatisfaction and rising questions and concerns regarding when, who, and where to implant?
Hence, I sought the opinion of an expert to try to shed some light into the very complex subject.
Frankly, I have been a little shocked and surprised by the realization that nearly 20years after the introduction of a well established medical treatment for Parkinson’s as is DBS there appears to be more confusion and concerns than ever before among the Parkinson’s community. I wonder if my perception was being skewed or had he also noticed an increase in re-do’s, repositioning and increase need for adjustments in programming among patients that had been implanted.
He stated that ” if patients were not properly selected this was bound to happen!”
So, I began the conversation by picking his brain to help me write an exposé on the subject given the fact that in my daily dealings with various Parkinson’s support groups and Parkinson’s patients there appears to be a growing number of discontent and exasperation along with some cases extreme anxiety surrounding the subject before, during and after implant.
First, a few facts about DBS–
What is it? it is a device of “implanted electrodes” deep in the brain known as the basal ganglia that provide a continuous small electrical current to these parts in an attempt to “jam the abnormal signaling between malfunctioning (either due to too much activity or too little) brain structures.”
No one knows the precise mechanism at the microscopic level- although extremely effective when done properly and while it is the state of the-art- treatment in Parkinson’s patients it neither removes PD, nor repair nor replace abnormal brain cells!
The first DBS was performed in 1986 in Europe and initially approved here in the states in 1993 for ET ( Essential Tremors- only known treatment to date that will halt tremors 100%). Subsequently, Parkinson’s got its indication in 1998 and dystonia treatment in 2003 ( other movements disorders like tics have seen its benefit but are still not main stream indications!).
But, one thing we MUST remember throughout the discussion is that just as PD remains an entirely unique disease for each individual involved so do the goals of DBS differ from person to person.
However, there are basic essential guidelines that must be followed to ensure a most successful outcome or at least increase your odds in a favorable direction!
This simply means that not everyone is an ideal candidate to receive DBS and they MUST be chosen wisely to minimize not only side effects, perioperative complications but also improve odds of effectiveness.
So, you mean is all about patient selection?
“Yes! there is a set of criteria that must be followed.”
What are the most important criteria in your opinion?
“1. have motor symptoms that clearly respond to dopa treatment, and 2. have motor fluctuations and dyskinesias.”
Are you saying these are the only criteria?
“No! but they are the most important. We must also ensure that patients have a good family support, no cognitive problems, swallowing or gait abnormalities, no history of depression, and is a good surgical candidate from a medical standpoint ( i.e. healthy a without other systemic diseases like cancer etc.).
Seems like criteria have not changed since I started my training, I said…these were same standards I followed while in practice…..
Only thing that seems to have changed is the public acceptance of being standard care ( which in part maybe reason for increase discontent because just because it can be done does not mean it should be done!) also, it used to be considered treatment in late stages or advance stages when fluctuations were present or medications neither tolerated nor working any longer.
However, there seems to be a trend to push for surgical intervention at an earlier stage. In fact some recent studies in YOPD from Europe have shown promising results. Maybe the wave of the future will be to implant early. Perhaps people will do even better and for longer periods of time if we discard current contraindications like swallowing, gait or even cognitive problems which are not part of early typical idiopathic Parkinson’s disease.
I wonder if the increase in complications and redo ( leads replacement ) have to do with surgeon inexperience? Or perhaps the benefit is being masked or substandard ( less than optimal) because of lack of programming experience…like everything in life and in medicine this is particularly true- expertise, knowledge and capabilities are user dependent.
As some of you well know from first hand experience, the experience of the programmer is as important or even more than the actual surgeon in ensuring a successful outcome! they must not only be acquainted with the subtleties of the programming devices but also be highly effective clinicians to know how far to push and when to hold back and how to adjust medications accordingly with every setting. In my experience the best programmers are those that are neurologist/ movement disorder specialist and or those that work extremely closely with the neurologist who knows how as well.
So, what’s in horizon for DBS treatment?
The St. Jude medical DBS device which is approved in Australia and in Europe but is not approved here in the US . According to Dr Ondo, this device failed to show what it promised in a study he speared. This particular non rechargeable device which was to offer 40 % more battery capacity and maximize time between battery replacements did not pan out or offer patients more control nor decrease risk of side effects.
Of course over the years , the re have been several modifications like the battery getting smaller lasting longer and also having one stimulator for bilateral stimulation. “Now, there are a few more adjustment options than previously but design still basically the same, replied Dr. Ondo. He stressed that still the best outcome and way to ensure greater patient success benefit and decrease side effects and complication is patient selection! Can’t stress this enough! “Patients that will do best are those that are generally healthy other than Parkinson’s and have DYSKENESIAs and have clear motor symptoms.” otherwise you are setting your self for disappointing outcome and even worsening symptoms like gait, speech, swallowing, and cognitive problems especially if already present but can be caused by the implant itself.
I asked about his experience with depression and DBS …”although reported in literature it is not extremely common”, he added. “What tends to happen more often is that depression is more likely to ensue with decreasing of dopa meds which inevitably occurs due to turning on of DBS”. However, it is important to track and monitor and treat accordingly..”but some of the depression,” he states , “may also be reactionary…patients hope DBS will cure all their symptoms or take away all the medicine and when it does not happen depression and disappointment can set in…one way to avoid this is to have clear cut expectations doc the outcome…what will the DBS do and not do…stop DYSKENESIAs, tremors and improve other motor symptoms but will not help with gait, and non motor symptoms.”
He and I recommend patients to Always do your research when considering DBS ..look at the doctor stats, ask for phone numbers of patients that have had this done …talk to them…also ask how many patients they have done, how long have they been doing this procedure. Equally demand these answers from the programmer…this is your brain and your life you cannot entrust such frail design as is the BRAIN to just any one..call the movement disorder society ask for their input.
Ask other organizations like PDF or PAN , or NPF to See who they recommend…ask around get second opinion if necessary….don’t ever go with someone who is eager to cut or put implant. The best surgeons are the ones that shy way from surgeries unless absolutely necessary!
In regards to focus ultrasound, I enquired if he thought this would be replacing DBS in the near future. Dr. Ondo informed me that there are currently 9 centers doing this research one of which is Virginia Tech but all for essential tremor at this point…he wonders if it will ever take place for Parkinson’s especially contraindicated in those that already have DBS because it will fry wires and injure brain…but even without DBS because it takes so long > 1 1/2 hr applying beam to scalp damages hair and because of site lesion required forPD ( deeper)in his mind there is a greater risk for bleed and causing permanent damage to nearby structures which can result in other movement disorders like hemi-ballismus- half of your body moves involuntarily.
Despite, the few shortcomings that some have experienced with this procedure, DBS has not only improved the life of thousands of individuals who otherwise 10, 15 and even 20 years ago had lost hope but has revolutionized the care of Parkinson’s patients world wide and still remains state of the art an in qualified hands in optimal patients nothing compares!
For more information on the topic go to http://www.pdf .org and look at “treating Parkinson’s -Deep Brain Stimulation”; can also go to Medtronics website. or contact Dr. Ondo at University of Texas Health Science Center.
Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com
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5 thoughts on “Health & Beauty tip #28: The TRUTH behind DBS ( Deep Brain Stimulation) by Dr. De Leon”
Great story, thanks for posting. I recently found an excellent programmer who is a MDS and am feeling much better.
This is an awesome, informative post, Dr. De Leon. People with PD often ask me about DBS. With your permission, I intend to post a link on my website so I can point them to your blog for answers. I appreciate you!!
Thank you BowenspeechBlog….you have my permission.
Thanks for the update Maria, DBS seems to be done more and more in the YOPD population,in the USA at least in the online discussion groups,. In Canada our surgeons have a very strict criteria just as you have mentioned here. You have to really fit into that criterion. It was interesting to read about the focused ultrasound, As it is permanent , it must mean much more risky.