What to Expect After DBS for Essential Tremor

Deep brain stimulation, or DBS, can relieve symptoms of essential tremor, such as hand and wrist tremors. However, the results of DBS are different for everyone. The information on this page explains what you can expect after DBS for essential tremor.

Remember that you have had two major surgeries. When you return home, rest as much as possible, and slowly return to regular activities. You have an especially high risk of falling in the weeks after DBS. Patients often become overconfident just after surgery. If you used a walker or cane before surgery, keep using it for a while until you are stronger and steadier.

Taking care of your incisions

Keep your incisions clean and dry for the first two weeks after surgery. If they accidentally get wet, gently pat them dry as soon as possible. You do not need to cover the incisions, except when showering, for two weeks following your surgery.

What is normal?

Some bruising near the surgery areas is normal. This will fade with time. Swelling around your eyes is also normal, and should get better in a week or two. Tenderness or numbness near the incisions and behind the ear may last as long as a month.

We will shave some hair on the top of your head for the first surgery. You will have small scars from the surgery. When your hair grows back, it will cover the scars.

Call Dr. Burchiel’s office at 503 494-4314 if you notice any:

  • Blood or other fluid coming from a wound.
  • Tenderness, redness or swelling at any of the incisions.
  • Fever.

After business hours or on weekends, call OHSU at 503 494-8311. Ask the operator to page the neurology or neurosurgery resident on call.

DO NOT put any creams or antibiotic ointments on your incisions. If you think you might have an infection, do not take any antibiotics by mouth. Come straight to OHSU for evaluation.

Your symptoms may improve temporarily after surgery. This is called the “microlesion” or “honeymoon” effect. It can last days or weeks after your surgery. If this happens, you might be tempted to lower your medication dose. But do not change your medications unless your neurologist recommends this.

Do not worry when the microlesion effect wears off. It is normal for your symptoms to go back to the level they were before DBS. Also, do not worry if you don’t have a microlesion effect. It does not happen to every patient.

Usually, it takes a few months for DBS to work as well as possible for you, and typically multiple programming sessions to optimize benefits fully.

Some people need speech therapy after DBS. Having DBS might not change your speech and voice, or they might get worse after DBS. Speech changes may include:

  • Slurred speech
  • Slower speech or “rushes” of rapid speech
  • Strained voice
  • Having to make more effort to speak
  • Difficulty being understood

You can work with your DBS programmer to adjust the IPG, or stimulator, for the best speech. It is important to do this before you start speech therapy.

Possible side effects include:

  • Some motor symptoms getting worse
  • Speech and language problems
  • Depression, including suicide and thoughts of suicide
  • Falling

Some people who had DBS seem to have mood and personality changes. For example, they may become more impulsive or aggressive. Also, some patients become depressed, including some who thought about or committed suicide.

Your relationship with your caregiver might also change. If you expected DBS to make you much more independent, and this does not happen, you might feel angry and upset. If you feel you still need a lot of care, and your caregiver thinks you should be better, this might also upset you.

The OHSU DBS team is here to help. If it is difficult to adjust after DBS or you feel depressed, talk to your doctor or DBS programmer. We can connect you with someone who can help.

Information for caregivers

When you take care of someone with essential tremor, you may feel needed and important. If your loved one needs less help after DBS, this can be difficult. On the other hand, you might feel overwhelmed as a caregiver. You might want the person with essential tremor to be more independent, so you do not need to do as much. So you might be disappointed when DBS is not a “miracle cure” and you still have caregiving responsibilities.

Before you have any medical procedure or imaging, tell your health care provider that you have a neurostimulation system. They can call Medtronic’s 24-hour technical help line at 800 328-0810 if they have any questions. If possible, call the OHSU DBS team at 503 494-7231 or 503 494-4314 before you have any procedure or imaging.

Below is a list of procedures to avoid, have or talk to the DBS team about first.

Diathermy: Avoid

  • Diathermy is a deep heat treatment. It uses high-frequency electromagnetic currents to create heat. This heat can go through your implanted system, causing tissue damage, serious injury or death.

Magnetic resonance imaging, or MRI: Call us first

  • Most types of MRI could damage the DBS. If you need an MRI, have the MRI provider call us to talk about how to do the scan safely. The MRI center must take specific precautions and follow strict guidelines to keep you safe. Also, you must turn your DBS off and turn the voltage to zero for the scan. You may turn it back on and return to your previous settings immediately after the scan.

Surgery: Call us first

  • Before surgery, your surgeon or a member of the surgery team must call Medtronic or your DBS provider to discuss the safety of the surgical tools they plan to use. You must turn your DBS off and turn the voltage to zero for the procedure. You may turn it back on and return to your previous settings immediately after the surgery.

Defibrillation or cardioversion: Turn off if possible

  • When possible, you should turn off your DBS using the patient programmer. Tell the person using the defibrillator or doing cardioversion to keep the pads as far away from your IPG as possible while still being effective. At least two inches is recommended. In an emergency, you might not have time to do these things. When time is an issue, save your heart.

EKG, CT scan, diagnostic ultrasound or X-ray

  • These are completely safe. We recommend you notify the technician doing the scan that you have an implanted device. Turn your DBS off before EKGs or CT scans to keep them from interfering with the scan. This helps the scan be as accurate as possible.