Patient Guide to Solving DBS Problems

Deep brain stimulation is a complex treatment that requires time and attention beyond the typical medical appointment, especially when there are DBS problems. Decisions about stimulation changes are based on patient reporting of symptoms, medication dosing, examination and reporting from the care partner.  In some circumstances, I also use brain imaging as a factor when selecting stimulation settings. The following data is helpful to have when adjusting stimulation and I frequently ask my patients about most of these at each appointment:

  1. Three day symptom diary that includes the time of each medication dose.
  2. Medication list that is accurate in how medications are taken. (This may not match how the medication was prescribed)
  3.  Pre-surgical work up including symptom testing or examination off and on medication.
  4. Brain imaging.
  5. Time-line from the patient’s perspective that includes benefit, side effects, problems. (Critical to sort out problems)
  6. All past stimulation settings and corresponding effects. (Some of my patients keep a running list of settings and response)
  7. Comprehensive notes from the care partner or home video of symptoms.
  8. Open discussion about sources of stress that may interfere with or hinder benefit from stimulation.
  9. Reporting of other unrelated medical problems, new medications or non-prescribed substances.
  10. Lastly and potentially the most important is the patient’s comments on how things are going and if not going well, what could be the source of the problem.

Read about an unusual second opinion from my troubleshooting files.