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Deep Brain Stimulation(DBS) Surgery

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A Decision Aid For
Deep Brain Stimulation (DBS) Surgery
An advanced therapy option for people with Parkinson’s Disease


Definitions and Questions


Definitions


Tremor – An involuntary, rhythmic shaking of part of the body. It often affects the hands, but can also affect the legs, chin, lips or face.

Bradykinesia – Slowness of movement. Daily activities may take longer.

Rigidity – Muscle stiffness that can occur in any part of the body. It can limit range of motion.

Dyskinesia – involuntary movement that can look like fidgeting, wriggling or body swaying due to long-term levodopa use.

Dystonia – When muscles contract, causing part of the body to curl or twist. Examples include curling of the toes or in turning of the foot.

Postural instability – Trouble with balance making someone unsteady when standing. It increases the risk of falls, especially backwards.

Freezing of gait – Sudden inability to move when walking or feeling like your feet are stuck to the floor.

Motor symptoms – The three main motor symptoms of Parkinson’s disease are tremor, bradykinesia and rigidity.

Non-motor symptoms – These are symptoms that are related to Parkinson’s disease but do not cause movement trouble. Some examples include anxiety, depression, memory and thinking changes, constipation, fatigue and urinary frequency and/or urgency.

ON Time – The periods of time when Parkinson’s medications are working well and controlling Parkinson’s symptoms.

OFF Time – The periods of time when Parkinson’s medications have worn off or are not working well and Parkinson’s symptoms return. This can include motor and non-motor symptoms.

Motor fluctuations – Variations throughout the day in motor function. People may have periods of ON time, when medications are working well, alternating with OFF time, when medications are not working well.


Questions to Ask your DBS Ambassador*

Timing of DBS
• How did you decide it was the right time for DBS?
• Do you wish you had done it sooner? Waited longer?
• What benefits of DBS stood out to you and helped you make your decision?

DBS Evaluation
• What was the evaluation process like?
• How hard was it for you to be off medications for the OFF/ON testing?
• Did you find the neuropsychiatric testing difficult or frustrating?

Decision Making
• What were your goals for DBS?
• What hesitations or concerns did you have about DBS?
• Did you consider any other options?
• What information resources did you find helpful to learn more about DBS and make your decision?
• How did you decide which device/system to get?
• Would you do it all again? Are you satisfied with the outcome?

Surgery Experience
• What was the surgery like? What was it like to be awake during it?
• How much of your hair did they have to shave? Did it grow back well?
• What was it like to wear the halo (frame) or have the frameless system?
• Is there anything you wish you had known before having surgery?
• Anything you wish you had brought with you to the hospital?

Recovery
• How much help did you need after each surgery?
• When were you able to return to your normal activities?
• When were you able to return to work?

Life with DBS
• What does DBS feel like when stimulation is on?
• How did you decide where to have your battery placed?
• How much were you able to decrease your Parkinson’s medications?
• How have your symptoms improved or changed after DBS?
• How has your quality of life changed? Are you more independent in your activities now?
• Is there anything that DBS did not help with that you had hoped or expected it would? Anything you wish you had known?
• If you could do it again, would you?


*your experience may be different from that of your Ambassador. Some people like to talk with more than one person who has had DBS to hear about the differences in experience.

Questions to Ask your Doctor or Surgeon

Timing of DBS
• Am I a good candidate for DBS?
• Is now a good time to consider DBS for me?
• How long do the effects of DBS last?

DBS Evaluation
• What tests will I have before DBS?
• What were the results of my tests?

Decision Making
• Which of my symptoms should improve with DBS?
• What are the possible side effects of DBS? Am I at increased risk for any of them?
• Is there a specific device/system that you would recommend for me?
• How many surgeries do you do per month?
• What kind of complications do you see? How often do they occur?
• If I choose not to have DBS, what are my other options?

Surgery Experience
• Do I need to stop my Parkinson’s medications before surgery? When?
• How many surgeries will I have?
• How long will I stay in the hospital after each one?
• How much of my head will be shaved?
• Will I be awake during surgery?
• Which part of the brain will the lead be placed in? Do you recommend one side or both sides?
• Where will the neurostimulator (battery) be placed?

Recovery
• What restrictions will I have after surgery?
• When will I be able to return to normal activities? When will I be able to drive?
• When will I be able to return to work?
• When will I be able to travel or fly after DBS? Go through metal detectors?

Life with DBS
• How often will I come in for programming? Who does the programming?
• Will I be able to decrease my Parkinson’s medications? When and by how much?
• How often will the battery need to be replaced? If rechargeable, how often and for how long will I need to recharge?
• Will I be able to make any adjustments to my stimulator in between appointments?
• How does having DBS affect my ability to get MRIs? Mammograms?

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