Daily Living – DBS Therapy

The following guidelines for deep brain stimulation (DBS) therapy for dystonia will help you get the most from your DBS therapy.

Recovering at Home

After your surgery, your doctor or nurse will give you instructions about care at home. These instructions often include information about medications, the healing process after surgery, and when to return to your daily activities.

Healing

Making a full recovery from surgery is a process that can take several weeks. During the healing process, you will feel some discomfort at the incision sites on your scalp, and at the implant site(s) for the neurostimulator(s). If you notice unusual symptoms, contact your doctor.

Medication

Always follow your doctor’s instructions for taking medication.

Daily Activities and Exercise

During your recovery, follow your doctor’s instructions about activities that include bending your neck, raising your arms over your shoulders, or strenuous activities like lifting heavy objects.

Be careful when participating in activities that may result in accidents or falls. Sudden jerky movements may cause the lead(s) in your brain to move. Falls may damage parts of the implanted DBS system. Surgery may be needed to repair or replace any damaged DBS system parts.

When to Call Your Doctor

Call your doctor if any of the following situations occur:

• You experience pain, redness, or swelling along the scalp, neck, or chest where the stimulation system is implanted
• You are not getting relief from your symptoms even though the neurostimulator is turned on
• You feel uncomfortable or painful sensations during stimulation (turn off the neurostimulator before calling your doctor)
• You cannot turn the neurostimulator off (or on)
• You experience unexpected changes in your symptoms
• You experience any unusual symptoms that you think may be caused by electromagnetic interference (for example, from theft detectors or airport security)
• You lose your patient programmer

Helpful Tips

• Be sure to let all medical personnel know that you have an implanted DBS system, and tell them where it is located. If they have any questions, they should contact your implanting doctor.
• If you experience any unusual symptoms that you think may be related to your neurostimulator, contact your doctor.
• Attend all follow-up appointments to make sure you get the best care.
• When the neurostimulator is turned off, your symptoms will return. Some symptoms return quickly. Other symptoms may take longer to return.

Symptom Control

There may be changes in the level of your symptom control over time.

These changes may include:

• Reduced symptom relief
• No symptom relief
• Loss of effective stimulation

In many cases, your clinician can correct these changes by reprogramming your DBS system. However, surgery may be required to reposition or replace the lead, replace the system, or remove the system.

Because your disease changes with time, your condition may improve, may worsen, or may remain unchanged with stimulation.