Recently, there has been a spur of interest in the surgical treatment known as deep brain stimulation (DBS) among the Parkinson’s community. Although, this procedure is by no means a ‘novel’ or ‘new’ treatment being approved by FDA back in the late 1990’s for tremor and 2002 for PD has begun to reach general stream awareness due to postings in the media by concert master R. Frisch playing the “fiddle,” during brain procedure (DBS). Of course, who can forget the recent nationally televised event which took place at University Hospitals Case medical Center in Cleveland, OH on October 25th on a YOPD patient began another debate of when and who should be having this procedure done?
Despite some reservations which include non-disclosure of funding by Medtronic’s to hospital and surgeons performing operation as well as an increased risk of possible complications due to outside factors usually not-present in the operating room; I believe that educational broadcasts such as this one play a very crucial role in validating DBS as a viable and effective treatment while raising awareness and promoting its use.
Even though, DBS is the standard of care in the treatment of Parkinson’s disease, since its approval only roughly 5% of all PD patients have had this procedure done, according to Dr. Allison Willis, Assistant professor of Neurology & Biostatistics and Epidemiology at The University of Pennsylvania school of Medicine. This is a great travesty considering that nearly $100 billion were invested by Medtronic’s to bring this technology forth. However, the worst part in my opinion is the huge discrepancy seen in those implanted, at least here in this country, which tend to be white males (95%). Even when women and other minorities are seeing and being followed by the same specialist as the men implanted, these groups seldom even get the option of DBS as a potential treatment.
So how do we decrease these discrepancies?
First, by being aware of its existence and coverage by insurance including Medicare (other assistance programs available through Medtronic’s). Now we also have a new competitor on the market known as the Brio Neurostimulation System. This unlike the Medtronic constant voltage device- it has a “constant current” delivery system allowing it to react to brain wave changes over time, thus potentially decreasing number of reprogramming visits.
Second, knowing that there is a specific type of person that benefits most from this procedure as well as a time window for obtaining best results.
Third, although usually offered or reserved for those who have clear cut tremors, dyskinesias, or intolerability to medications due to side effects of the same in the presence of good and clear cut symptom control with levodopa; some physicians are opting to perform this procedure in YOPD patients early in the disease in hopes it might alter the disease process. This is not yet known. At present DBS is not a cure nor does it alter disease progression however, it does buy the individual with Parkinson’s time for other advances to occur as well as decrease both the doses and medication side effects.
The one reservation I have in performing the procedure too soon is knowing when is best time to do? Since we still don’t have a biomarker or blood test or other objective testing to say a person has PD unequivocally besides a brain biopsy, I worry that for those that have other slower progressive parkinsonian symptoms – an implant maybe done unnecessarily. However, I will venture to say that at 10 years one should have a clear indication of disease and whether or not it conforms to typical PD progression and if a patient would be a good candidate.
As I find myself in the process of weighing in the benefits of having a DBS for the sole purpose of reversing medication intolerability; I am again revisiting the top reasons why a patient can or does poorly with this procedure.
TOP REASONS for Less than Optimal outcome once RIGHT candidate chosen.
1.Neurosurgeon technique– find one with experience- one that has done many- ask names of people that have had done.
- Programmer’s experience is the most crucial in my opinion!!!! Best if the programmer is the SAME MDS/neurologist adjusting your medications. As voltage goes up medications MUST come down! Second best option is seeing programmer at same time in same office as neurologist. Find out about the programmer you will be seeing beforehand…how good are they? Bedside manner? Patient satisfaction?
- Patient’s lack of support from inner circle of family and friends. This is crucial if care partners are not on board with procedure – it won’t be successful. Or frail elder caregivers.
- Patients sometimes fail to fully grasp their own disease stage as well as their own age in regards to having risk for other medical issues. Unfortunately, as we age not only might we develop other problems like high blood pressure, diabetes, etc. but PD will continue to progress so distance to programmer is very important. Think about fact that you will make several trips a year especially at the beginning of DBS to make adjustments; thus traveling 5 hours may not be such a big deal at first but can get old and more difficult to do as time passes. If this is a problem and still a good candidate consider pallidotomy surgery instead or hopefully in next couple of years Focused ultrasound. I have had several patients who have undergone procedure only to not benefit from it because they could no longer travel to centers where programming was being done. Fortunately, now we also have two choices of devices both by Medtronic’s and Brio which produce constant current.
Now that you are aware of this new technology my esteemed reader, I recommend that you bring up the topic with your physician yourself but do in a separate visit to discuss this thoroughly.
Questions to ask?
- Am I a candidate?
- Who and where will the surgery be done?
- Who will do programming?
- How many steps are involved in procedure because it seems to me like every teaching institution has different protocols-ranging from bilateral implants as an outpatient with no general anesthesia or sedation other than the part when battery is implanted in the chest wall to a 5 step procedure as is being done at Vanderbilt in which I believe also like to have patients asleep during surgery. Other concerns although purely for vanity purposes but also one that might cause more or less possible skin infections in scalp is the manner in which patient is prepped –total head shave or only minimal plus will they be using titanium halo for stereotactic mapping or a lighter frame?
- Most importantly how long will you have to be off medications for the procedure? Some people have such severe pain or dystonia’s off medication that will make procedure much more difficult.
Now we are ready to embark on a life changing journey with the knowledge at our finger tips to help us and our doctors make the right decision of whether DBS is right for us or not? For me the idea of taking much fewer meds is extremely appealing but having to drive 6 hours round trip to get adjusted every few months is somewhat of a draw back since I will have to do this on my own most of the time. keep you posted!
Good luck to all of us!
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