GETTING DBS: WHAT TO EXPECT DBS THERAPY FOR DYSTONIA

WHAT TO EXPECT IF YOU CHOOSE DBS

You're probably wondering what to expect if you choose deep brain stimulation (DBS) therapy for dystonia.* Along the way, you’ll have the support and expertise of a neurologist, neurosurgeon, and a clinician who have training and experience with DBS.

Part of your healthcare team's job is to make sure you're comfortable and satisfied with your therapy. Always ask for clarification if there's something you don't understand. Also, make sure to communicate any concerns you may have regarding the procedure or follow-up treatment.

Remember: You'll get the best results from your therapy by actively participating in discussions with the members of your healthcare team.

1. EVALUATION — DETERMINING IF YOU ARE A CANDIDATE

Your neurologist — typically a movement disorder specialist — will evaluate you to see if DBS is a good treatment option for you.

DBS may be right for you if:

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

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

2. PLANNING — PREPARING FOR SURGERY

Your doctor will create images and maps of your brain to help guide the placement of leads during the surgery. You will have an MRI or CT scan to capture images of your 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.

4. PROGRAMMING — STIMULATION SETTINGS

DBS

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

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

5. CONTINUOUS THERAPY

Over time, your doctor will adjust the therapy settings in your device to meet your specific needs. Individualized therapy settings are programmed in the clinic using wireless communication between the implanted device and a clinician programmer. Every individual is different, so programming optimization 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 of your checkups with the doctor who manages your DBS therapy. Your doctor will:

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

INSURANCE COVERAGE

The total cost of Medtronic DBS therapy for dystonia varies significantly. Please contact your health provider for an estimate of the costs associated with DBS Therapy.

Coverage for DBS typically follows a case-by-case basis for Medicare and private payers. Humanitarian Device Exemption products are eligible for Medicare coverage if the treatment is provided by a site that has Institutional Review Board approval and the patient meets the FDA approved guidelines for coverage. Please contact your insurance company to see if your health plan provides coverage.

Information on this site should not be used as a substitute for talking with your doctor. Always talk with your doctor about diagnosis and treatment information.

*

Humanitarian Device - Authorized by Federal Law as an aid in the management of chronic, intractable (drug refractory) primary dystonia, including generalized and/or segmental dystonia, hemidystonia, and cervical dystonia (torticollis), in patients seven years of age or above. The effectiveness of the devices for treating these conditions has not been demonstrated.