Pediatric Deep Brain Stimulation (DBS)

DBS is a neurosurgical procedure used to treat children with severe seizures caused by medication-resistant epilepsy and dystonia, a movement disorder that causes abnormal muscle contractions. It is also used to manage tremors from head injuries or cerebral palsy.

DBS is a surgical procedure in which a thin wire called an electrode or lead is implanted in the area of the brain responsible for abnormal movement, seizures, or obsessive-compulsive disorder (OCD). The lead is connected to a pulse generator that is implanted under the skin near your child's collarbone.

Once activated, the generator sends mild electrical pulses through the lead to your child's brain. These electrical pulses modify the electrical signals in your child's brain to help control abnormal movements, seizures, or OCD symptoms.

What are the benefits of DBS?

DBS may offer benefits including:

• A fully reversible treatment option — If your child experiences side effects or DBS isn’t effective, the leads and pulse generator can be removed.
• Adjustable settings for optimal symptom control — Your child’s doctor can adjust the settings on the pulse generator to meet their treatment needs. New technology allows use of a remote control to adjust the level of stimulation to achieve the greatest symptom relief with the fewest side effects.
• Fewer symptoms with lower medication doses — Your child may be able to take lower doses of medication, reducing the risk of side effects.
• Improved quality of life — Reduced symptoms may improve your child’s ability to engage in everyday activities.

DBS involves two procedures. During the first procedure, your child’s doctor will implant the leads into your child’s brain. During the second procedure, your child’s doctor will implant the pulse generator and connect it to the leads.

Lead implantation

After your child has been registered, he or she will be taken to a “holding area” where you will meet your child’s pediatric anesthesiologist and neurosurgeon. Your child’s pediatric anesthesiologist — a doctor who specializes in anesthesia for children — will give the medications that will make your child sleep during the surgery. At this time, you will be able to ask any questions about the procedure.

After your questions are answered and the operating room is prepared, your child will be taken into the operating room and given an anesthetic to make them go to sleep. When your child is asleep, the lead implantation surgery will begin.

Your child’s neurosurgeon will:

• Place a special frame on your child’s head to hold it in place and keep it from moving during the procedure. Before the frame is placed, your child’s hair may need to be shaved.
• Take intraoperative CT or MRI images and load them into the image-guidance system. These images help your doctor precisely place the leads during your child’s procedure.
• Create small openings in your child’s skull and place the leads using imaging guidance. Your child’s neurosurgeon may wake them and ask them to look at pictures, move their limbs, speak, or read to ensure the leads are in the correct positions.
• Perform another intraoperative CT or MRI to confirm that the leads are in the correct positions.
• Close the incisions.

Pulse generator implantation

The pulse generator implantation surgery will be performed under general anesthesia. Your child will be asleep and will not feel any discomfort. 

During the pulse generator implantation surgery, your child’s neurosurgeon will:

• Make a small incision just below your child’s collarbone.
• Use wires that run under your child’s skin to connect the pulse generator to the leads.
• Implant the pulse generator under your child’s skin.
• Close your child’s incision.

What are the risks of DBS?

UPMC Children’s takes every precaution to make sure your child is safe.

Risks involved in the surgery include:

• Bleeding in your child’s brain.
• Coma.
• Infection.
• Pain or soreness near the pulse generator.
• Problems with the leads or lead wires.
• Sepsis.
• Stroke.
• Swelling in your child’s brain.

When general anesthesia is needed, there are important rules for eating and drinking that must be followed in the hours before the surgery.

One business day before your child’s surgery, you will receive a phone call from a nurse between the hours of 1 and 9 p.m. (Nurses do not make these calls on weekends or holidays.) Please have paper and a pen ready to write down these important instructions.

The nurse will give you specific eating and drinking instructions for your child based on your child’s age.

The following are the usual instructions given for eating and drinking. No matter what age your child is, you should follow the specific instructions given to you on the phone by the nurse.

For children older than 12 months

• After midnight the night before the surgery, do not give any solid food or non-clear liquids. That includes milk, formula, juices with pulp, coffee, and chewing gum or candy.

For infants under 12 months

• Up to six hours before the scheduled arrival time, formula-fed babies may be given formula.
• Up to four hours before the scheduled arrival time, breastfed babies may nurse.

For all children

• Up to two hours before the scheduled arrival time, give only clear liquids. Clear liquids include water, Pedialyte®, Kool-Aid®, and juices you can see through, such as apple or white grape juice. Milk is not a clear liquid.
• In the 2 hours before the scheduled arrival time, give them nothing to eat or drink.

Once your child has been registered for the surgery, a member of the anesthesia staff will meet with you to take your child’s vital signs, weight, and medical history.

A pediatric anesthesiologist — a doctor who specializes in anesthesia for children — will meet with you before the surgery. They will ask questions about your child’s health and about when your child last ate.

Because your child may have eaten more recently than is usually advised for surgery, the anesthesiologist may make adjustments to your child’s anesthesia. Once admitted, your child will not be able to have anything to eat or drink until after the operation.

• As the parent or legal guardian, you will be asked to sign a consent form before the anesthesia is given.
• If your child is very scared or upset, the doctor may give a special medication to help them relax. This medication is flavored and takes effect in about 10 to 15 minutes.
• If you wish, you may be allowed to go with your child to the room where the surgery will be done and stay while the sleep medication is given.
• Younger children will get their sleep medication through a “space mask” that will carry air mixed with medication. Your child may choose a favorite scent to flavor the air flowing through the mask. There are no shots or needles used while your child is still awake.
• Older children may choose between getting their medication through a mask or directly into a vein through an intravenous (IV) line.
• When your child has fallen asleep, you will be taken to the waiting room. If it has not already been done, an IV will be started so that medication can be given to keep your child sleeping throughout the surgery.

While your child is asleep, their heart rate, blood pressure, temperature, and blood oxygen level will be checked continuously. Your child might have a breathing tube placed while they are asleep. If a breathing tube is used, your child might have a sore throat after the surgery.

• To keep your child asleep during the surgery, they might be given anesthetic medication by mask, through the IV tube, or both.
• In some types of lead placement DBS surgeries, it is necessary to wake your child to ensure the leads are placed in the correct area. The brain can’t sense pain, so your child won’t experience any discomfort.
• When the surgery is over, the medications are stopped and your child will begin to wake up.

After surgery, your child will be moved to the recovery room. You will be called so that you can be there as they wake up.

• Children coming out of anesthesia react in different ways. Your child might cry, be fussy or confused, feel sick to their stomach, or vomit. These reactions are normal and will go away as the anesthesia wears off.
• While your child is in recovery, your surgeon will talk to you about the surgery. That is a good time to ask questions about pain medications, diet, and activity.
• When your child is awake enough, they might be given a Popsicle® or “slushy” to drink in the recovery room. After the anesthesiologist sees your child can hold down the drink and their pain is controlled, your child will be transferred to the Epilepsy Monitoring Unit. This usually takes about an hour.

The most important role of a parent or guardian is to help your child stay calm and relaxed before the surgery. The best way to help your child stay calm is for you to stay calm.

• You are encouraged to talk to your child or hold their hand before the surgery, while sleep medication is given, and while in recovery.
• You may bring along a “comfort” item — such as a favorite stuffed animal or “blankie” — for your child to hold before and after the surgery.

Your child will be given pain medication after the surgery, which will help with discomfort when the anesthesia wears off. Your child’s doctor will give you instructions for how to administer pain medication at home after your child is discharged from the hospital.

After the lead placement surgery, your child will need to stay in the hospital overnight. When your child arrives in their hospital room, they might still be groggy from the surgery.

Diet

In the hospital, your child’s diet will be restricted to liquids, such as water, Gatorade®, Popsicles® or Kool-Aid® for a couple of hours to ensure their stomach is settled after the surgery. If your child does well with liquids after a couple hours, they may try a light diet and soft foods, such as applesauce, soup, toast, bananas, rice or hot cereal. Your child may resume a normal diet the next day. 

Discharge from the hospital

After your child is discharged from the hospital, they should avoid strenuous activities for four to six weeks. Your child’s care team will provide care instructions for your child’s incisions, medication instructions, and information about when your child can return to normal activities.

Pulse generator implant surgery

Your child will be scheduled for a second surgery to implant their pulse generator within two weeks of their lead placement procedure. This procedure is typically a same-day surgery that is performed under general anesthesia.

Your child may need to restrict their movements and avoid stretching or reaching overhead for a few days after surgery.

Follow-up care

After your child’s pulse generator is implanted and connected, your child’s doctor will schedule a follow-up appointment to program the device. Programming the device is done wirelessly and does not require additional surgery. It may take several visits to find the right settings to effectively manage your child’s symptoms.

As your child’s doctor works to find the best setting for your child’s needs, your child may experience side effects including:

• Balance or coordination issues.
• Confusion.
• Depression.
• Difficulty focusing.
• Memory problems.
• Numbness and tingling in certain parts of their body.
• Seizures.
• Vision problems, such as double vision.
• Weakness or loss of muscle control.

If your child’s device has a rechargeable battery, it will last about nine years. When it is time to replace the battery, your child will need to have another same-day surgical procedure.

If your child has a fever higher than 101.5 F, bleeding, or foul-smelling drainage from the area around the incisions, call your surgeon right away.

Also, call the doctor if your child has:

• Increased or unexplained pain.
• Increased swelling or redness at the incision site.
• Increased tenderness near the incision.
• Nausea, vomiting, diarrhea, or constipation that is not improving.

If you have any specific questions about your child’s surgery, you should discuss them with the surgeon before the surgery. You may call the Pediatric Neurosurgery Division at UPMC Children’s and ask to speak with your child’s surgeon or speak with them during the presurgical examination on the day of the surgery. Call the division at 412-692-5090.

If your child has any special needs or health issues that the doctor should be aware of, please call the Pediatric Neurosurgery Division at UPMC Children’s before the surgery and ask to speak with a nurse. It’s important to notify us in advance about any special needs your child may have.