Common DBS FAQs
The Parkinson's Foundation has compiled a list of common DBS FAQs as cited below from their Surgical Options booklet published in 2022.
Is DBS neuroprotective?
While DBS doesn't directly protect cells against damage, it can help people continue functioning and exercising. Growing evidence shows exercise eases Parkinson's symptoms and offers neuroprotective benefits.
Is it better to have DBS on one side of the brain or both sides?
Because Parkinson's typically affects both sides of the body within several years after diagnosis, DBS surgery often involves implantation of two leads to target both sides. Unilateral (one-sided) DBS, which mainly helps symptoms on the opposite side of the body, is considered when symptoms dramatically affect one side, or when surgical risk is high. Experts may also postpone treating a second location due to someone's overall health or to reassess whether further action is needed. A second DBS lead may be associated with adverse or negative events, such as walking, talking, and thinking issues.
How long do the benefits of DBS last?
In most cases DBS benefits - including effectiveness against tremor, motor fluctuations and dyskinesia - last many years. If PD symptoms still respond to levodopa and other dopaminergic medication, DBS will generally continue to work. DBS settings are typically changed the most during the first year of therapy. Postoperative programming visits are most frequent during the first six months following implantation. Once the programmer determines the best settings, most changes will be made to medications, though occasional neurostimulator adjustments may occur.
Will I be able to stop taking my PD medications after I have DBS?
DBS is not a substitute for medication and does not stop PD progression. It helps control symptoms. Once programming has maximized benefits, your PD doctor might gradually lower medication doses. Most people need to continue taking medications, but many - especially those who have subthalamic nucleus (STN) DBS - might be able to decrease their total daily dose by 30-50% and/or take medications less frequently throughout the day. People with globus pallidus (GPi) DBS, which can reduce dyskinesia, may not be able to significantly reduce medications, but can often increase medication as PD progresses. Exercise continues to be a key for motor symptom management, as do support therapies for symptoms not treated by DBS, such as speech, cognition, or balance issues.
How do I know if I am a good candidate for DBS?
It's important to talk with a movement disorder specialist to decide if DBS is the right choice for you. A movement disorder specialist - the best resource for confirming you have PD prior to surgery - may recommend medication adjustments and therapy before exploring DBS. DBS could be harmful when applied to other conditions that mimic PD, such as vascular parkinsonism, dementia with Lewy bodies, progressive supranuclear palsy, multiple system atrophy and corticobasal syndrome. The best candidates for DBS therapy will have a type of PD that responds to levadopa, "On/off" fluctuations with or without dyskinesia, and tremor that does not adequately respond to medications. Additionally, a history of trying different combinations or carbidopa/levodopa and dopamine agonists under supervision of a movement disorder specialist that have not had beneficial results, PD symptoms that interfere with daily activities, and motivation to follow through with the different stages are of DBS are all factored into the decision.
When is DBS not a good choice for people with Parkinson's?
If you have significant symptoms related to balance, walking or freezing that are not helped by PD medication; speech trouble as a main symptom; confusion, disorientation or daily memory and thinking difficulty; depression anxiety, or other psychiatric symptoms that don't improve or stabilize with proper therapy such as medication or counseling - you may not be a good candidate for DBS surgery. Even if positive, dopamine transporter scans (DaTscans) can not provide a definitive diagnosis, another serious health condition, such as severe heart or lung disease may make neurosurgery dangerous.
When should I get DBS?
The right time varies from person to person. If you have motor fluctuations or dyskinesia that do not improve with medication adjustments and negatively impact your quality of life, it's generally a good idea to start exploring surgical options. Though you don't have to wait a specific amount of time, it can take several years or longer to determine whether your PD symptoms respond to levodopa - a determining factor in DBS success - or to rule out atypical Parkinson's.
What if DBS doesn't work?
Though DBS failure is possible, most reasons are preventable - including lead placement issues or hardware malfunction, as well as programming, medication management or disease progression problems. DBS can also fail if someone is not a good candidate. If you have not improved within six months of DBS surgery, ask your doctor if you need a complete workup to discover the cause of failure and whether it can be fixed.
Are there activities I should avoid following DBS surgery?
You can generally resume normal daily activities within a few months of DBS surgery. Always ask your neurologist for instructions specific to your device. Try to avoid massaging and excessively touching components implanted in the neck and chest. Also avoid activities that put you at a high risk for falls - such as climbing or reaching for objects above shoulder level. This can damage or dislodge hardware, requiring further surgery. Though swimming is generally OK, never swim alone, as people have drowned after having DBS.
Can I exercise after having DBS?
Like medication, exercise should be considered a vital part of PD treatment. It is important to return to regular exercise after waiting four to six weeks following DBS surgery. Avoid contact sports or exercise that may dislodge the neurostimulator or the connecting wire.
How long will the battery last? What should I do when it stops working?
Non-chargeable batteries can last between three and five years, while some rechargeable batteries can last 15 years but require daily or weekly charging. Each device has a specific battery level when replacement is recommended. Your DBS programmer should check battery life at every visit and tell you when the neurostimulator needs to be replaced - an outpatient procedure. You can also monitor the battery level with your handheld device. If battery power runs out, your symptoms will likely worsen. More medication than usual may be needed until the neurostimulator is replaced.
Can the DBS stop working suddenly after several months or years?
Yes, the DBS system can stop, usually if battery power runs out or device hardware malfunctions -- for example, a break occurs in the connecting wire in the neck or scalp. If your PD symptoms suddenly worsen, there may be a problem with the DBS System. Contact your neurologist immediately.
Can I have the DBS system removed?
Yes, you can have the leads and neurostimulator taken out. DBS wires may be left in place if they are not causing problems, as removal involves added surgical risk. With DBS you can try any new Food and Drug Administration-approved treatment for PD symptoms. However, most clinical trials exploring the safety and effectiveness of new therapies exclude people who have had DBS or other neurosurgery.
Will my insurance cover DBS costs?
DBS surgery and hardware can be costly. Because DBS is approved by the FDA for the treatment of PD, Medicare, Medicaid, and most private U.S. insurance carriers generally cover most of the operation costs. Your personal insurance policy will have a DBS coverage section. Ask your DBS center if you can also meet with a financial counselor to know what to expect.
Will my neurostimulator activate the metal detector at the airport?
It may possibly set off the alarm, but security equipment rarely turns the neurostimulator off. Most airports make special accommodations for people with medical devices and allow them to go around the metal detector. Consider taking your Parkinson's Foundation Aware in Care Kit when traveling. It contains tools to keep you safe when you travel or go to the hospital with a DBS system.
Will I feel the electricity when the neurostimulator is turned on?
Most people with DBS report feeling a brief tingling sensation, nausea, or dizziness for a few seconds after the device is turned on. You may temporarily feel a more intense electric sensation while the stimulator is being programmed.
Disclaimer: The information found within the Surgery section of the Parkinson Association of Alabama Parkinson's Disease Resource Center is for educational and awareness purposes only. The PAA does not condone nor endorse any specific procedure or medical product. Discussion about whether or not you are a candidate for a surgical procedure should be discussed between you, your care partner, and your medical team.
Parkinson's Foundation. Surgical Options, A Treatment Guide to Parkinson's Disease. Page 34-35. "Booklet." 2022