Questions for DBS Provider

Deep brain stimulation (DBS) is a neurosurgical procedure that requires an experienced multi-disciplinary medical team.

If you are considering DBS or if DBS has been recommended to you by a movement disorder team, consider discussing the following questions with your doctors:

  • How many people with dystonia has your center treated with DBS? What forms of dystonia have you treated with DBS?
  • What are the outcomes of your DBS for dystonia patients? Do you publish your results?
  • What percentage of your DBS for dystonia patients have complications during or following the surgery? What are the most common complications you encounter and how do you address them?
  • Am I a good candidate for DBS? Why or why not?
  • Where can I get a second opinion?
  • Please describe the DBS for dystonia process, from beginning to end. What are the surgeries like? What does recovery entail? What can I expect from the programming phase?
  • What are the risks of DBS treatment for dystonia?
  • What are the potential side effects of DBS surgery for dystonia?
  • How can the surgery or side effects be reversed?
  • What can I expect my results to be like? How long does it take before the full benefit of DBS is apparent?
  • Are there any cosmetic issues related to the implanted hardware I should be aware of?
  • What tests are needed prior to surgery?
  • What kind of battery will be used? How often can I expect to need a battery change?
  • What type of follow-up is needed after surgery? Who will program the DBS unit?
  • What are my short-term and long-term restrictions after DBS?
  • What is the cost of the procedure and what arrangements must I make to ensure coverage through my insurance provider?
  • Are there issues pertaining to DBS surgery we have not yet discussed that I should be aware of?

For assistance locating movement disorder centers with expertise in deep  brain stimulation for dystonia, contact the DMRF.

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