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Intrathecal Baclofen Pump
As a regional leader in pediatric neurology and neurosurgery, Gillette Children’s Specialty Healthcare is one of the top providers of effective treatments to manage spasticity related to cerebral palsy and other complex conditions. One treatment option is intrathecal baclofen (ITB) pump implantation. The ITB pump helps manage spasticity, particularly in children, teens and adults whose spasticity is widespread.
Gillette was one of 12 U.S. medical facilities testing the ITB pump’s safety and effectiveness when the FDA approved the device in 1996. Since then, we’ve developed the nation’s largest ITB pump program, serving more than 500 patients whose widespread spasticity (tightness or stiffness) remained a problem despite nonsurgical treatments.
Why Choose Gillette?
- Gillette is a regional leader in pediatric neurology and neurosurgery and one of the nation’s Best Children’s Hospitals in orthopedics.
- Our coordinated team of medical, surgical and rehabilitation specialists evaluates every patient before ITB pump implantation.
- We believe that comprehensive rehabilitation helps children reach their full potential following ITB pump implantation.
- Our commitment to clinical research and measurable outcomes promotes the highest standards of care and optimal treatment outcomes.
Intrathecal Baclofen Pump Definition
An intrathecal baclofen (ITB) pump is a drug delivery system to treat muscle spasticity. Spasticity most commonly affects people who have cerebral palsy, an acquired brain injury or another condition that involves the brain or spinal cord. ITB therapy helps reduce spasticity by allowing muscles to relax. Sometimes we recommend ITB pumps for patients who have complex movement disorders or spinal cord injuries and need treatment to relieve spasms, reduce abnormal movements and improve motor function.
Because baclofen is administered intrathecally (directly into the spinal fluid), patients require smaller doses than they would with the oral form of the medication. Using smaller doses lowers the risk of side effects, such as drowsiness.
ITB therapy can reduce spasticity and might reduce dystonia (a type of movement disorder), but it doesn’t affect other problems associated with cerebral palsy. A person who has spasticity might still require orthopedic surgery, such as a single-event multilevel surgery (SEMLS), to correct muscle contractures or bony deformities.
Candidates for Intrathecal Baclofen Pump Implantation
Intrathecal baclofen (ITB) therapy is an important method for improving tone or reducing spasticity in patients who have certain medical conditions. ITB therapy is well suited for patients who have widespread spasticity or whose therapy goals include improving function.
The therapy can also help:
- Increase comfort
- Reduce pain
- Make it easier to change positions
- Make it more comfortable for people who wear braces
- Make it easier for patients and caregivers to manage activities of daily living (such as dressing and hygiene)
Preparing for Intrathecal Baclofen Pump Implantation
Once we’ve determined that a patient is a good candidate for intrathecal baclofen (ITB) pump therapy, we help families plan a convenient time for ITB pump implantation. We also provide a preoperative packet to help patients and families start preparing for pump implantation and the related needs that will arise afterward. Our child life specialists and social workers in Child and Family Services can address concerns and help families prepare for the patient’s pump implantation and hospital stay.
Managing Diet and Digestion
Overall health can affect how well and how quickly a patient recovers from an ITB pump implantation.
- Diet: Good nutrition can aid a patient’s pump implantation and recovery. Patients should eat healthy amounts of foods containing iron, calcium and vitamins C and D. Such foods include dairy products and fresh, colorful fruits and vegetables. Protein is also very important for healing. For six weeks before ITB pump implantation, we suggest increasing the amount of protein a patient consumes. Good sources include meats, dairy products, nuts and eggs. A patient doesn’t have to eat more food than usual. If weight gain is a concern, substitute servings of protein for servings of any carbohydrates a patient would otherwise eat. (Many cookbooks include guides to understand how much food equals one serving.)
- Bowel Management: If a patient has trouble with constipation before or after ITB pump implantation, ask your primary health care provider to develop a treatment plan.
Weaning Off Medicines
When we schedule ITB pump implantation, we ask about the medicines the patient takes. Before pump implantation, patients sometimes need to gradually stop taking some of their medicines, such as these.
- Valorpic acid (Depakote): This medication can increase the risk of bleeding after pump implantation. We might perform lab work to determine whether patients should stop taking it before pump implantation.
- Blood thinners (Coumadin and warfarin): If patients use blood thinners, we’ll discuss any special procedures or planning required before pump implantation.
Alerting Us to Latex Allergy
Even though Gillette doesn’t use or allow latex in our buildings, it’s still important to tell doctors if a patient has a latex allergy or has had a severe reaction to latex.
Sometimes fears, behavior and expectations related to pump implantation cause stress for patients and families. We recommend contacting the patient’s primary health care provider or Child and Family Services. We can help locate resources that might help reduce anxiety. Our child life specialists can provide emotional support and distractions (such as toys and movies we can bring to the preoperative waiting area before the pump implantation begins). Child life specialists also can meet with a patient’s siblings to address their feelings and concerns.
Scheduling Appointments Before ITB Pump Implantation
Several weeks before ITB pump implantation, we call to schedule several preoperative appointments, which usually occur the day before pump implantation. Our goal is to help patients and their families feel as prepared and supported as possible.
Some appointments might include:
- PrePARE: A surgeon might refer the patient to Gillette’s Presurgical Patient Assessment and Risk Evaluation (PrePARE) Program. The PrePARE program identifies and addresses health issues that could complicate a patient’s pump implantation or recovery following pump implantation. During the PrePARE evaluations our pediatricians learn important information that is shared with the patient’s surgeon so we can provide the best possible before and after pump implantation.
- Preoperative Rehabilitation Therapy Evaluations: We recommend that patients receive occupational therapy and physical therapy evaluations before undergoing pump placement. Therapy evaluations prior to pump placement give us a baseline record of a patient’s strength and range of motion, and a patient’s level of control while rolling, sitting, standing or walking. In addition, these evaluations allow us to discuss important issues, such as the family’s goals for the pump placement.
- Tour of Gillette: Families may call us several weeks before pump implantation to schedule a hospital tour and education session, which usually occurs the day before implantation.
- Child and Family Services: In addition to conducting tours and education sessions, child life specialists and social workers are available to provide emotional support to patients and families before and during hospitalization. Before ITB pump implantation, families can make an appointment to speak with a child life specialist on how best to prepare their child for pump implantation and hospitalization. Social workers are also available to provide emotional support to parents and assess on-going needs throughout their child’s hospitalization and at discharge.
Planning Ahead for the Return Home
It’s important to plan well in advance for discharge from the hospital to address needs that might arise during—and after—the trip home. Our staff works closely with patients and families to help make the transition from hospital to home as smooth as possible.
We recommend families and caregivers bring the patient’s mobility equipment, such as a wheelchair and orthoses, during their hospital stay. This allows us to easily adjust the equipment, if needed. For example, sometimes the wheelchair’s seatbelt might need to be adjusted so it doesn’t rub on the pump.
During the Hospital Stay for Intrathecal Baclofen Pump Implantation
Before Intrathecal Baclofen Pump Implantation
Our perianesthesia staff greets patients and their families upon arrival for intrathecal baclofen (ITB) pump implantation. We then weigh the patient and ask the patient to change into a hospital gown. We also check the patient’s temperature, pulse and blood pressure.
For ITB pump replacement and revision, we’ll place an intravenous (IV) tube upon arrival to give the patient antibiotics and decrease the likelihood of infection after pump implantation.
A child life specialist helps prepare patients for ITB pump implantation and offers toys, crafts or movies to help them feel more at ease.
Next, patients and families meet with the ITB pump implantation team: the operating room nurse, neurosurgeon, nurse anesthetist and anesthesiologist. Any questions or concerns can be raised at this time. Families or caregivers can tell the nurse and anesthesiologist about the patient’s experiences with pain and request medicines and other techniques to help decrease the patient’s anxiety. The anesthesiologist explains how we use anesthesia and pain medicines during pump implantation.
Right before ITB pump implantation, the neurosurgeon marks the place on the patient’s body where incisions will be made. Next, we take the patient to the operating room where one family member may accompany the patient until they begin to fall asleep. We use anesthesia inhaled through a mask or received through an intravenous (IV) tube. After the patient is asleep, we insert a breathing tube. If we haven’t placed an IV tube yet, we’ll do that as well. Patients receive fluids through the IV tube during and after the ITB pump implantation. Our staff monitors breathing throughout the procedure.
During ITB Pump Implantation
The neurosurgeon fills a small pump with baclofen and implants it under the skin of the patient’s abdomen, but above the muscle, near the waistline.
The neurosurgeon connects a catheter (a narrow, flexible tube) to the pump and routes it under the skin to the patient’s back. A second incision is made to position the tip of the catheter in the intrathecal space, where it will deliver the baclofen directly to the fluid-filled area surrounding the spinal cord.
A rehabilitation medicine physician or nurse practitioner uses an external programmer to set the pump to begin delivering appropriate doses for the patient. From this point on, the pump continuously dispenses baclofen into the patient’s intrathecal space.
Immediately After ITB Pump Implantation
After ITB pump implantation, patients start out in the Postanesthesia Care Unit (PACU), then move to the Rehabilitation Unit.
Postanesthesia Care Unit (PACU)
Patients wake up here and reunite with their family or caregivers. Shortly afterward, nurses ask how much pain the patient is feeling and provide medicine for pain management if needed. The neurosurgeon meets with family or caregivers when the patient is in recovery and discusses the procedure and next steps.
Shortly after pump implantation, temporary changes in a patient's appearance might be noticeable. For example, the patient’s face and hands might be puffy due to body position during pump implantation. There might also be redness around the patient’s eyes and lips. That’s because we often place protective tape over the eyes and around the mouth to keep the breathing tube in place.
The patient wears an abdominal binder for six to eight weeks to support the pump and prevent swelling as it heals. The patient also receives an X-ray as a baseline to document the pump and catheter’s positions.
The First Few Days After ITB Pump Implantation
Patients typically spend five to seven days in the hospital recovering from ITB pump implantation. They might feel weak after the procedure. Two incisions were made when placing the baclofen pump in the patient’s body—one in the abdomen and one in the middle of the back. As a result, patients might have some discomfort or feel tenderness in these areas for a few days.
Patients who receive ITB pumps must lie flat for up to three days after pump implantation. Lying flat in bed minimizes the risk of fluid leaking near the point at which the catheter enters the intrathecal space surrounding the spinal cord.
Physical therapists visit patients at the bedside once they can tolerate increasing the bed’s head height and angle—typically three days after pump implantation. The physical therapist helps patients get back to doing their usual activities and prepare for the transition to home.
Throughout the patient’s stay, rehabilitation specialists will assess muscle tone and discuss the patient’s condition with family or caregivers to make decisions about the appropriate intrathecal baclofen dose.
Going Home After Intrathecal Baclofen Pump Implantation
We begin planning for the patient’s successful return home as soon as he or she arrives at the hospital. Planning continues throughout a patient’s stay.
Before Going Home
Before patients leave the hospital, their nurse discusses these important things to do:
- Families or caregivers must notify the patient’s primary and other health care providers that a pump has been implanted. Providers need to know about the pump if they prescribe medications or perform tests and procedures.
- Patients must always keep a pump registration card with them. (This contains information on the pump’s reservoir size, dose, low reservoir alarm date and refill date.)
- Patients must obtain an identification bracelet indicating that they have an intrathecal baclofen pump. Other caregivers need this information in case of an emergency.
- Patients, their families or caregivers will need to learn the difference between noncritical and critical alarm sounds. (If a noncritical event occurs, the patient is still receiving baclofen. If a critical event occurs, the patient isn’t getting baclofen, making the event an emergency.)
Follow-Up Care After Intrathecal Baclofen Pump Implantation
When a patient receives an intrathecal baclofen (ITB) pump, it might take several adjustments to find the dose appropriate for them. We make many of the dose adjustments after the patient leaves the hospital. At return clinic appointments, we assess how well the patient’s spasticity is managed, and if necessary we adjust baclofen dosage or refill the pump. Based on the patient’s needs, we determine how often they must return for dosage adjustments and pump refills. It’s important for patients to keep all scheduled appointments to avoid running out of baclofen in the pump. If the pump runs out, the patient might experience baclofen withdrawal.
If a patient has withdrawal, they might experience the following symptoms:
- Increased spasticity
Baclofen withdrawal can be serious and life threatening.
ITB Pump Refills
A newly implanted ITB pump usually contains a one- to three-month supply of baclofen, depending on the dose and the concentration of medication it delivers. It needs to be refilled by the patient’s health care provider before it runs out of baclofen. The refill takes 20 to 30 minutes and the patient can usually go back to work or school afterward.
Frequency: Most pumps need to be refilled every three to four months. Some patients have their pumps refilled as often as once a month, or as rarely as once every six months. We schedule the next refill appointment before the patient leaves the clinic. The scheduler uses the pump's alarm date to make a refill appointment.
Alarm Date: The alarm date appears on the patient’s pump print out. This is when the patient’s pump only has a few days of medicine left. Patients should get the pump refilled three to five days before this date. If the pump runs out of medicine, the patient might go into baclofen withdrawal, which is uncomfortable and might be life threatening.
What Happens During a Pump Refill: First, the nurse reads the pump with a programmer—a computerized device to reprogram the pump. This tells us the patient’s dose, medicine concentration and how the medicine is running (infusion mode). We ask about the patient’s muscle tone, range of motion, current medicines, and general health.
Most patients lie on an exam table during the refill. We might first apply a topical anesthetic to the skin to numb the area and make the procedure more comfortable. A care provider cleans the skin over the pump with an antiseptic. To refill the pump, we insert a needle through the patient’s skin directly into the reservoir of the pump. Most patients will feel some pressure on the abdomen. After the needle enters the pump, we remove leftover baclofen and add a new supply of medication.
Reprogramming Dose Adjustments: We adjust the dosage based on the patient’s needs. If the patient’s health care provider decides to change the dose, we usually do this at the time of the refill with no additional surgery. The programmer communicates with the pump and obtains information about its currently programmed dosages. It also allows us to transmit new dosage instructions to the pump. It takes 12 to 24 hours for a dose change to take effect.
ITB Pump Replacement
An ITB pump’s battery usually lasts five to seven years, depending on the doses it dispenses. The patient’s pump will need to be replaced before the battery runs out.
With pump replacement, patients require an overnight hospital stay. If the catheter must also be replaced, patients require a five-day hospital stay and care similar to when the pump was first implanted. They’ll need to wear an abdominal binder again to support the pump for six to eight weeks. If we replace the catheter, patients must lie flat for approximately three days.
Long-Term Management of Intrathecal Baclofen Pumps
Although people with intrathecal baclofen (ITB) pumps will be able to do many things at home or while traveling, they need to avoid activities that could affect how the pump is working. People with ITB pumps need to consider the influence of collision, air pressure, water pressure and water temperature before beginning an activity. Talk to your health care provider before participating in activities that could affect the pump.
Patients are able to travel nationally and internationally without experiencing problems with their ITB pumps. We can discuss with patients, their families or caregivers what they might need to consider before traveling.
For example, we might recommend:
- Having the ITB pump refilled.
- Bringing a supply of baclofen tablets.
- Carrying the name, address and phone number of a provider in the travel area who is familiar with baclofen pumps.
- Bringing the patient’s Medtronic identification card and the 800 number for Medtronic.
- Bringing an extra copy of the patient’s printout and catheter implant data.
- Keeping oral medicines and other supplies the patient might need easily accessible, especially when separated from checked luggage.
- Letting Gillette know if the patient will need a pump refill before returning home.
- Letting health care providers know if the patient plans on travel to another country so any time zone adjustments can be discussed.
Patients, families or caregivers should also be aware that because the ITB pump might set off the airport’s metal detectors, patients should bring their Medtronic pump identification card to show airport security. In addition, if the patient plans to take a non-commercial airplane, it must not go higher than 8,000 feet.
Our Intrathecal Pump Implantation and Therapy Services
Successfully selecting patients, performing intrathecal baclofen (ITB) pump implantation and providing long-term care to patients with ITB pumps require the collaboration of a highly skilled team. At Gillette, our patients and families have access to a full range of medical specialists services and comprehensive support services. Together, we promote the highest standards of patient care.
Services and specialties most often associated with ITB pump implantation and long-term care include:
In addition, Gillette offers a vast array of child and family support services to help patients cope with their hospital stays and make the most of their long-term care.
Some of our services include: