Deep brain stimulation, or DBS, can relieve the motor symptoms of Parkinson’s that are helped by levodopa – tremor, slow movement (bradykinesia) and muscle rigidity. However, the results of DBS are different for everyone. The information on this page explains what you can expect after DBS.
Remember that you have just 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. Your hair will grow back. If you have questions about this part of the procedure, please ask your care team.
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. Contact your DBS care team, per your discharge instructions.
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 do not have a microlesion effect. It does not happen to every patient.
How long does it take to get the full benefit of DBS?
Usually, it takes a few months for DBS to work as well as possible for you. So you may need to have your stimulator programmed and optimized several times to get the full benefit.
Some people need speech therapy after DBS. Having DBS might not change your speech and voice, or they might get worse. In most cases, DBS does not improve the speech and voice changes caused by Parkinson’s.
Speech changes from DBS are different from changes related to Parkinson’s. They 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.
Speech therapy for Parkinson’s and DBS
We recommend Lee Silverman Voice Treatment, or LSVT, as the most effective way to treat speech and voice problems from Parkinson’s. For Parkinson’s without DBS, you do this program at least four days a week for four weeks, and we offer this at OHSU. Research shows it improves loudness, voice quality, articulation and facial expression. Patients who had DBS may need to do LSVT longer, have more LSVT within six months, or have other help with speech.
Swallowing problems are a common symptom of Parkinson’s. DBS may or may not affect swallowing. Some patients have swallowing problems immediately after DBS that get better in a few days or weeks. Others have difficulty swallowing at certain DBS stimulator settings, and some patients have no changes after DBS. If you have any swallowing problems after DBS, please tell your DBS programmer and neurologist.
Other possible side effects include:
- Some motor symptoms getting worse
- Speech and language problems
- Depression, including suicide and thoughts of suicide
Some people who have had DBS seem to have mood and personality changes. For example, they may become more impulsive or aggressive. Certain Parkinson’s medications can also cause this kind of behavior change. Also, some patients become depressed, including some who think about or commit 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 to help.
Information for caregivers
When you take care of someone with Parkinson’s, 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 Parkinson’s 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 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, it’s recommended that you 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.