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GETTING DBS: WHAT TO EXPECT DBS THERAPY FOR DYSTONIA

WHAT TO EXPECT IF GETTING DBS

It's natural to wonder what to expect if prescribed deep brain stimulation (DBS) therapy for dystonia. Along the way, patients will be able to count on the support and expertise of a neurologist, neurosurgeon, and a clinician who have training and experience with DBS.

Part of the healthcare team's job is to make sure patients are comfortable and satisfied with their therapy. Always ask for clarification if there's something that isn't clear. Also, make sure to communicate any concerns there are regarding the procedure or follow-up treatment.

Remember: the best results from therapy will be achieved by actively participating in discussions with members of the healthcare team.

1. EVALUATION 

The neurologist — typically a movement disorder specialist — will evaluate a patient to see if DBS is a good treatment option for them.

DBS may be may be prescribed by the doctor if:

  • Have chronic dystonia
  • Have been unable to successfully manage your symptoms with medication
  • Have primary dystonia, including generalized, segmental, hemidystonia, and cervical dystonia
  • Patient is 7 years of age or older

The doctor will share the results, and together they will decide whether to go forward with the therapy.

2. PLANNING — PREPARING FOR SURGERY

The doctor will create images and maps of the brain to help guide the placement of leads during the surgery. An MRI or CT scan will be conducted to capture images of the brain.

3. SURGERY — PLACING THE SYSTEM

There are two parts to the DBS surgery: implanting very thin wires (leads) in the brain and placing the pacemaker-like device, called the neurostimulator, under the skin of the chest. The two parts may be done on the same day, or two different days.

TAKE A CLOSER LOOK AT SURGERY

4. PROGRAMMING — STIMULATION SETTINGS

View a photo of the Activa PC DBS patient programmer.

A few weeks later, the doctor will turn on the neurostimulator and adjust the stimulation to best control the symptoms while minimising side effects.

  • It will take a few programming sessions to find the stimulation levels that work best for you.
  • Patients should have follow-up visits to check their results and adjust as needed. These appointments are key to getting the results wanted over time.

5. CONTINUOUS THERAPY

Over time, the doctor will adjust the therapy settings in the device to meet your specific needs. Individualised therapy settings are programmed in the clinic using wireless communication between the implanted device and a clinician programmer. Every individual is different, so programming optimisation may take place over several months to find the settings that best reduce your seizures and potential side effects.

Always follow your doctor's guidance about which activities are okay and which to avoid.

6. CHECKUPS — ONGOING CARE

It's extremely important to attend all checkups with the doctor who manages the DBS therapy. The doctor will:

  • Make sure that the DBS system is working properly
  • Adjust the stimulation to best control the symptoms 
  • Check the battery of the neurostimulator to see if a device replacement will be needed soon.