Deep Brain Stimulation General Guide
DBS General Guide
The information in our DBS General Guide is aimed at helping our patients understand the process of going through deep brain stimulation surgery. Here are answers to frequently asked questions that typically arise before, during, and after the surgery has occurred.
Deep brain stimulation (DBS) is a treatment that involves low current electrical stimulation of deep structures within the brain. It is usually done in two stages.
First, surgery is performed to place electrodes in either one or both sides of the brain in one of three areas of the brain, depending on your condition. This may require a 1-2 night stay in the hospital.
One week after brain surgery, the patient returns to the hospital for day surgery in which one or two pulse generators, or "batteries," are placed under the skin of the chest. These devices are connected to the electrodes in the brain. Several weeks later, the pulse generators are turned on and begin to activate the electrodes in the brain which deliver the electrical therapy continuously.
What conditions are treated with deep brain stimulation?
Since 1997, DBS has been FDA approved to treat essential tremor and parkinsonian tremor. In 2002, the FDA approved its use for Parkinson's disease and for dystonia since 2003.
How long has DBS been used as a treatment for movement disorders?
In the mid-1900s, neurosurgeons performed lesioning surgeries in the brain to treat movement disorders. Lesioning surgeries were meant to selectively destroy brain tissue thought to be responsible for involuntary movements.
In the mid-1980s, it was discovered that electrical stimulation offered the same clinical benefits with a much lower risk of causing permanent and/or unwanted brain tissue damage. At that point, knowledge from the development of cardiac pacemakers was used as a model to create medical devices to enable electrical stimulation to run constantly using pulse generators or "batteries" placed within the patient. Modern DBS manufacturers have developed rechargeable pulse generators which may last up to 10 or more years depending on the device.
According to Lozano et al., as of 2019, over 160,000 people worldwide have received DBS for treatment of various movement disorders including tremor, dystonia, and Parkinson's disease.
Will This Benefit Me?
There are many factors that help determine whether DBS will be beneficial. Please find this information in our website under your specific condition: Parkinson's disease, tremor, or dystonia.
In general, for dystonia and tremor disorders, if you have a movement disorders specialist-confirmed diagnosis of dystonia or tremor and do not experience sufficient relief with medications, DBS can be helpful. Additional factors may help predict how much benefit you will receive from DBS.
For Parkinson's disease, the diagnosis should be confirmed by a movement disorders specialist. You should typically have a good response to medications but experience increasing complications from the medications which can include increased "wearing off" time and/or involuntary movements from the medications themselves. There may be other clinical scenarios which could make an individual a good candidate for DBS. Your movement disorders specialist will be able to discuss these with you in detail.
Patients should be able and willing to come for frequent pre-operative and post-operative visits for the first 3-6 months after the surgery. After counseling and education, patients should demonstrate good understanding of how the therapy works and have realistic expectations about benefits and side effects or complications.
Are there patients who should not receive this treatment?
As noted above, there are certain types of conditions that will probably not benefit from this treatment. In addition, the treatment is generally not offered if any of the following exist:
- Significant dementia or confusion
- Previous stroke
- Bleeding disorders
- Active psychiatric problem such as depression or anxiety
- Another significant brain disorder
- Abnormal brain MRI
- A medical condition that makes general anesthesia unsafe
What are the two stages of DBS surgery?
The first stage is implantation of an electrode on either one or both sides of the brain which is done after you undergo an MRI wearing a head frame on the morning of the operation.
The operation is done under intravenous anesthesia so that you can be awakened during parts of the procedure so that we can judge your responses to brain stimulation during the operation. Medication for discomfort or anxiety will be given if needed.
Electrical recording and stimulation of the brain is carried out by a neurophysiologist to precisely identify and map out the surgical target. You may be asked to perform some simple motor or cognitive tasks so that the best location for electrode placement can be identified. After mapping of the brain, a permanent stimulating electrode is placed within the appropriate target.
For patients undergoing bilateral surgery the same procedure is repeated on the other side of the brain. The procedure will take approximately 3 to 5 hours depending upon whether one or two DBS leads are placed. After surgery you will resume medication if it was withheld for the surgery, and a CT or MRI scan will be done to confirm lead placement. You will be sent home after one or two nights in the hospital.
You will return about 7 days later to have the pulse generator implanted under the skin just below the or close to the collar bone. This is done under general anesthesia and will take approximately 1-2 hours. These will be connected to the brain electrode by an extension wire running under the skin from the top of the head and behind the ear to the pulse generator. Most of this connection can be felt but not seen.
You will go home on the same day. Your first programming session will be scheduled for approximately 3-4 weeks after the second stage operation.
What kind of procedures will I go through just before the operation?
If you are having surgery for Parkinson's disease, it's important to arrive without having taken your medications for Parkinson's disease since 8pm the night before.
You will be fitted with a large frame that is placed on the top of your head and stabilized with small screws. You may be given local anesthesia to numb the skin and to minimize your discomfort. With the frame in place, you will undergo an MRI of the head in order for the surgeon to determine the best location for your DBS electrode(s).
You will then be transported to the operating room and prepared for surgery. Your hair will be shaved, the skin will be cleaned with a sterilizing solution. You will also be given a dose of antibiotics to reduce the risk of infection. Surgical drapes will be placed over your head like a tent. In addition, you may be offered a urinary catheter so that you can urinate freely during the operation. The frame will remain on your head the entire time until the operation is completed.
What kind of procedures will I undergo during the operation?
Surgery will begin with an incision in your scalp. You will be given doses of local anesthesia to completely numb the scalp. You may still feel pressure but should not feel sharp pain. A special tool is used to create an entry point in the skull for the electrode.
The electrode apparatus is then placed over the entry point and slowly inserted. At this point electrical recordings of the brain cells will take place. You may hear loud static-like sounds over a speaker as the surgical team evaluates the recordings and determines whether the electrode is in a good position. Often, the team determines that a slightly different location will yield better recordings. The process may be repeated several times until the team feels the electrode is in the best position. The neurologist or neurophysiologist may examine you while the recordings take place to verify proper lead location. Examples include the examiner touching your face, cheek or hand with a swab or repeatedly lifting your arms or legs. The examination varies by the brain condition being treated and the target that is being operated on.
After the optimal location has been determined, a stimulating electrode will be placed precisely where the recording electrode has been placed. The electrical stimulation will be turned on slowly to determine whether you have side effects, or in some circumstances, whether there is immediate relief of tremor or stiffness which can confirm a properly placed electrode. You may be asked to speak or to tell the surgical staff if you're experiencing tingling, slurred speech, pulling of the face, or visual problems. These are often temporarily induced by test stimulation and represent a possible transient side effect of the stimulation. Once stimulation has been moved away from the area causing side effects, those symptoms will go away. Once confirmed a special cap is placed on the skull to permanently fix the electrode in its position.
The process may be repeated on the other side if you are having both sides of the brain operated on in the same day. Once all test stimulation is complete and the caps are placed on the skull, the incisions will be closed and the surgery is complete.
Whom will I see on the morning of my surgery?
You will see anesthesiologists, surgical nurses, MRI technicians as well as your neurosurgeon and the neurophysiologist during the course of the morning. A neurologist may also be present during the procedure to help with examination and stimulation.
How much pain or discomfort will I experience during the operation?
There can be some discomfort when the frame is attached to your head. Local anesthesia can be given if needed. Additionally, some patients find that being awake and without their medications may potentially feel stiff during the operation. Warming blankets and repositioning of the muscles may help during the operation.
Will I be awake for the operation? Why is it necessary that I be awake?
Most patients, except in extraordinary circumstances, are kept awake during the operation. A large part of the success of the surgery depends upon the electrical recordings that are taken during the operation. If you receive sedation or anesthesia, this silences the unique electrical recordings of the areas of the brain where the DBS electrode needs to be placed. Therefore, it is important to remain awake for the operation. Our surgical team is experienced in helping patients during this process.
How long will I stay in the hospital after the first surgery?
Patients need to stay in the hospital until their incision-related pain can be well controlled with oral pain medications and when they are able to eat/drink/walk. On average, most patients stay only one night after surgery and occasionally a second night. Patients will also receive a CT scan or MRI after the surgery to confirm the location of the electrode(s) and to check for any post-operative bleeding. This CT scan or MRI is done without the head frame.
How long is recovery? What special instructions will I receive after the surgery?
Recovery is fairly uncomplicated for most patients, but in 10% of patients they will feel sleepier and slower and possibly mildly disoriented for several days after surgery. It is essential for all patients that a plan is in place before surgery for additional help in the home during at least the first week after surgery.
In addition, you will receive instructions not to touch the surgical wounds with your hands. These instructions apply to both your 1st and 2nd stage surgeries. You will not be able to shower or get the area around the incision wet until the wound has completely healed. You will be scheduled to return to the neurosurgery clinic for a wound check and if applicable, removal of the stitches. If you see any redness, swelling, or leaking fluid, please call the neurosurgeon's office immediately as these can be early signs of infection.
When does the DBS actually get turned on?
DBS programming takes place about 4-5 weeks after your surgery. This time frame is selected in order to give time for the brain to heal post-operatively. You will receive a phone call with an appointment and special instructions regarding medication.
The appointment can last anywhere from 1-3 hours, depending on if you have one or two electrodes and whether you have Parkinson's disease, dystonia, or tremor. Please be prepared to bring your medications with you and someone to drive you to the appointment and back.
What follow up care is required if I have this treatment?
It is important to understand that patients who have DBS must make frequent visits to the outpatient clinic during the first three months after surgery. These visits are needed so that doctors can program your stimulation so that it is just right for you. The doctor can change the strength and frequency of the electrical stimulation that your brain is receiving. These changes are then matched with adjustments in your medications until the right balance is achieved.
At first, you may be coming in as often as every two weeks for adjustments. Once stable settings are found and a new medication schedule has been established, you will not need to come in as frequently.
The initial "breaking in" period, when you require frequent adjustments, may last as long as three months. Over time, you may need additional changes as your Parkinson's disease progresses. If you live far from the hospital or have difficulty arranging transportation, this is something to carefully consider before deciding to have the surgery.
Six months after stimulation is started, we recommend you return for another follow-up visit and neuropsychological testing (if you have Parkinson's disease).
Who else will be involved in my follow up care?
In our center, programming is carried out usually by a movement disorders fellow and Dr. David Simon or Dr. Lan Luo. Six months after your surgery, a repeat neuropsychological examination will be performed by the neuropsychologist or neuropsychology fellow to determine whether there has been any change in your cognitive functioning after DBS. We also have available the expertise of various members of our interdisciplinary team, including the physical therapist, occupational therapist, speech therapist, social worker.
Do I need any follow-up testing?
We recommend that if you had neuropsychological testing prior to surgery that you have a repeat test done 6 months after surgery.
When can I go back to work?
This depends on the nature of the work and how quickly you recover from surgeries. In general, we do not recommend going back to work for at least two weeks. Most patients do not go back to work until after the DBS programming is begun, usually 4-5 weeks after surgery. Please talk with your physician about this in detail.
Can I swim?
For your safety, you should always have a swimming buddy when going swimming for the first time after your DBS surgery. In the journal Neurology, there was a report of nine individuals with PD who had subthalamic DBS and lost their ability to swim after DBS was turned on. However, please note that most people remain capable swimmers post-DBS.
Can I play golf?
You can play golf and any other sport that does not have a significant risk of falls, hard impacts or extreme twisting of the head and neck. The goal is to avoid breakage of the DBS equipment that runs from your skull, through your neck and into your chest.
Can I travel by air?
You will be able to travel by airplane without difficulty. At the airport or at any security checkpoint, please inform security officials that you have DBS. Show them your DBS ID card and ask to have hand wand inspection. With the new generation of batteries, there is very little risk of your deep brain stimulation being inactivated by security scanners.
On a thin person, the "batteries" or pulse generators might be visible as large bumps (about half the size of a deck of cards) underneath the skin in the chest. In addition, special caps (roughly the size of 2 quarters stacked) placed on the skull to keep the electrodes in place may be visible if you have little or no hair covering the area. A thin, flexible wire runs from your scalp to your chest under the skin in your neck that can often be felt but not usually seen. There are no visible metal parts in the entire DBS system.
Will I be able to feel the devices in my body?
You may notice small bumps on either side of your head at the surgical sites. The stimulator batteries can be felt under the skin. A wire that connects the battery in the chest to the scalp can also be felt under the skin but is not visible. There is a small amount of discomfort just after these devices are placed in your body, which is controlled with mild pain medication. After a few days, there is no discomfort from either the brain electrodes or the electrical devices in the chest.
When the electrodes are activated in the operating room or at any time in the clinic, you may feel a tingling or pulling feeling in your legs, arms, or face. This sensation should subside within a few moments. If not, the settings of your electrodes will be changed to correct the sensation. Your electrodes continuously stimulate the targeted brain region; however, once they are turned on and set correctly, you should not feel anything.
Can I have x-rays, EKG, or CT scans?
X-rays, electrocardiograms (EKG), and CAT scans are permitted and safe for use with DBS. DBS can interfere with the quality of the EKG. If you have your device with you, you can inactivate your DBS for several minutes for the EKG technician and usually reactivate it without negative consequences aside from temporary increase in tremor if you have tremor that is being treated with DBS.
Can I have MRI?
Because MRI uses a powerful magnet to make images, care is needed to avoid damaging the hardware or any tissues that are in contact with the DBS. If MRI of the brain is needed for any reason after having DBS placed, you will need to let the radiologist know that you have a DBS system in place. Your DBS system may need to be turned off during the scan or placed into an MRI safe mode depending on the type of DBS you have. MRI of other body parts may not be done safely at this time and CT scan is recommended. Other tests, like X-rays, ultrasound, or CT scans, can be done safely.
Can I have diathermy (aka "deep tissue ultrasound")?
As a part of physical therapy, some therapists may recommend deep tissue ultrasound to heal inflamed soft tissues. This is not permitted in patients with DBS due to concerns of transmitting too much energy to the DBS system.
Do I need to take antibiotics before dental cleaning?
You do not need to take antibiotics before dental procedures because you have DBS. Antibiotics before dental procedures are typically recommended for patients with specific heart valve problems. Please check with your primary care physician.
Do I need to take special precautions prior to colonoscopy?
Most colonoscopies will not require the use of a procedure to remove abnormal tissue. However, in the event that your doctor needs to use a device called electrocautery to remove abnormal tissue, we recommend you turn off your DBS prior to the colonoscopy.
Do I need to take special precautions prior to mammography?
Mammography is safe to perform in patients with DBS. Special care may be needed to avoid twisting the DBS battery while the technician compresses your breast for the test.
Can I have a pacemaker or cardiac defibrillator put in?
If the need arises for you to have a cardiac pacemaker or defibrillator put in, this can be done. Your cardiologist needs to be made aware that you have DBS.
What if I have cardiac arrest and someone needs to resuscitate me using a defibrillator?
There is a risk of damage to the DBS system and to the brain if powerful electrical shocks are used, such as with cardiac defibrillators. However, we strongly recommend that cardiac defibrillation as a potentially life-saving measure and should be used when appropriate, regardless of whether you have DBS or not.<
Any surgical procedure carries some risk, and this is also true of DBS surgery as well. Your overall health will be evaluated carefully before you are recommended for this surgery to make sure the risk of problems is low. Fortunately, neurologic side effects of DBS have been very uncommon in our experience.
The most potentially serious side effect is bleeding in the part of the brain where each electrode is inserted. Some bleeding in the brain occurs in 1-2% of procedures in which a needle, wire, or electrode is passed through the brain. Fortunately, the majority of such brain hemorrhages are small, produce little or no neurologic deficit, and are detected only by postoperative brain imaging, which is done the day after surgery. To help prevent bleeding, patients are instructed not to take any blood thinners such as warfarin (Coumadin), heparin, aspirin, anti-inflammatory drugs, or arthritis medications (all of which interfere with blood clotting mechanisms) for at least two weeks before surgery.
There are several possible problems related to equipment that may occur months to years after the system has been installed. These include breakage of the electrode wire under the skin in the scalp or neck and skin infection or skin breakdown in the scalp. With the exception of certain types of hardware breakage, these problems can usually be corrected without removal or replacement of the brain electrode. Your neurologist and neurosurgeon will speak with you in more detail concerning these possible complications and answer any questions you may have.
If MRI is needed for any reason after having DBS placed, you will need to let the radiologist know that you have a DBS system in place. Because MRI uses a powerful magnet to make images, care is needed to avoid damaging the hardware or any tissues that are in contact with the DBS. For this reason, head MRI may be done in a very limited fashion. MRI of other body parts may not be done safely at this time and CT scan is recommended. Other tests, like X-rays, ultrasound or CT scans, can be done safely.
Also, diathermy or "deep tissue therapeutic ultrasound" (e.g., shortwave diathermy, microwave diathermy or therapeutic ultrasound diathermy) is contraindicated because diathermy's energy can be transferred through the system, which can cause tissue damage and can result in injury or death.
I am worried that the deep brain stimulator might accidentally turn off. What do I do in that situation?
With most DBS systems, the chance of DBS being accidentally being turned off is quite low and usually happens if you are near or around a powerful electrical device. This is unlikely to happen with household appliances like microwaves, cell phones, and computers. A refrigerator magnet might have the ability to turn the pulse generator off. In our clinical experience, very few patients have had difficulty with this. With newer generation batteries, this is very unlikely to happen since the manufacturers removed the magnetic switch that can inactivate the device.
In the event you suspect your DBS has turned off, you can use your patient programmer to check the functioning of your DBS and turn it back on yourself. These patient programmers will be given to you at the time of surgery or at the initial programming visit in the clinic and you will be instructed on how to use it. Feel free to discuss this with your movement disorder specialist or DBS representative if you have trouble using your programmer.
If you and your doctor decide that you might be a good candidate for this surgery, we will ask you to meet with a number of specialists on our team and to undergo a series of examinations. Through this process, we will be better able to tell if there is a good chance the surgery will help you without posing any unusual risk. This process will include:
- A prolonged, in depth evaluation of your condition, treatments tried in the past, general medical health, and in some cases, a day clinic during which you will arrive off your medications (if you have Parkinson's disease)
- Neuropsychological testing - If you have Parkinson's disease or dystonia, you will meet with a neuropsychologist who will administer tests to evaluate your thinking, your memory, and your psychological health.
- Meeting with the neurosurgeon - You will also meet with the neurosurgeon who will perform the operation. You will undergo a complete examination, and have a chance to talk about any questions or concerns you may have about the surgery.
- If not done within the past year, an MRI examination of the brain is needed and can be performed near your home or at BIDMC.
Once all these exams are complete, our team will look at the information and decide whether or not to recommend surgery. The DBS team at BIDMC is a multidisciplinary group of healthcare providers specializing in neurology, neurosurgery, social work and neuropsychology. If our team feels that further treatment with medication is needed, these recommendations will be provided to you and your referring physician.
If surgery is recommended, you will be scheduled for the procedure to take place within approximately one month. Once your surgery has been scheduled, you will be given more information about coming to the hospital for routine pre-operative tests.
If I need to stay somewhere overnight so I can attend all my appointments, where do you recommend?
The Inn at Longwood Medical (Best Western)
342 Longwood Avenue, Boston, MA
Is it possible to talk to patients who have undergone surgery and DBS therapy to ask them about their experience?
Yes, our center has a list of patients that are willing to talk to patients considering surgery in order to discuss their personal experience with DBS.
Will this procedure be covered by my insurance?
Deep brain stimulation surgery and the follow-up programming and care are covered by Medicare and private insurers. There may be co-pays or co-insurance for which you are responsible. Patients with questions concerning their responsibility and coverage should contact their private insurance companies for specific information. Patients with Medicare only should call the BIDMC Financial Counseling department at 617-667-5661 for additional assistance.
Deep brain stimulation clinical repository
As part of an ongoing research study, you may be asked to enroll in our clinical DBS repository. Your participation would be limited to answering a series of questionnaires before DBS surgery and completing the same questionnaires 6 months after DBS surgery. Your participation in this study is completely voluntary and you will receive no compensation should you choose to enroll. The study will take place during your routine DBS clinical appointments. Your answers on the questionnaires will have no bearing on your candidacy for surgery and will be used for research purposes only. If you have any questions about the repository or the kind of research your data will be used for, please contact our DBS repository research coordinator at firstname.lastname@example.org.