Even though I have written on this subject in the past, I thought it was worthwhile revisiting since there are so many individuals with questions, concerns, and not sure when to have surgery or if they should have surgery at all?
DBS made by Medtronics has been around since the 1990’s and FDA approved first for tremors in 1995 then for Parkinson’s in2002. At the beginning, the indications were much narrower with time they have been expanding as are the patients which receive this treatment. This used to be a treatment reserved as a last resort but now from years of practice, we neurologists and movement disorder specialists have understood that preservation of quality of life is of utmost importance rather than rescue patient from severe disability. But, in order to do this, we as physicians (MDS) & neurologists and even patients and caretakers need to start discussion long before disability sets in…
There are still 3 criteria for DBS for Parkinson’s to ensure best outcome:
1) must have idiopathic Parkinson’s
2) motor symptoms which must be responsive to Levodopa are at some point either inadequately or inconsistently controlled with patients current regimen which should be at optimal levels
3) patient is troubled by their motor symptoms and /or their medication effects
The key to proper and effective use of DBS is early introduction of DBS as a viable treatment option early on in the disease…so that it gives patients and families adequate time to begin accumulating knowledge regarding procedure and asking the right questions that might impact their life…after all if you wait too long may miss window of opportunity because patients have to undergo a series of test including on/ off evaluations, Neuropsychiatric evaluations, MRI ‘s, blood tests, referral to neurosurgeon all of which can take up to a year from beginning to end from decision to evaluate be accepted, be implanted then turned on and even longer by the time all the final settings become stable …normally DBS first turned on 2 weeks after implant…then slowly usually every month or so go up on parameters as medications are gently titrated off/or usually decreased in most patients.
Of course during this period, there may be possibility of surgical complications which can delay programming. Also, distance from home can be a factor for longer periods between programming.( I highly recommend that if at all possible choose a programmer who is also a neurologist and or an MDS will usually get best results or someone that works very closely in same office with one). Don’t be afraid to ask for references and names of patients surgeons and programmers have treated before…
Remember early education is key -DBS is not a CURE but can significantly alter a patients and therefore a caregivers quality of life! DBS is only treatment to date known to stop tremors 100%, other benefits include reduction in bradykenesia, motor fluctuations, Dyskenesias,rigidity & improved tolerability to medications. However, I must caution that most people especially with bilateral implantation will experience increase speech problems, drooling, gait difficulties, swallowing, cognitive problems, depression and gait instability. So, if you already have these problems need to outweigh risk because it is almost certain these will intensify and worsen…discuss with your physician before proceeding.
For more information on how to find a reputable MDS/ surgeon performing DBS placement or doing programing contact Movement Disorder Society at www.movementdisorders.org or www.aan.org.
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 www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; www.aan.org, www.defeatparkinsons.blogspot.com
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