Doctors and Nurses Answer Questions

Doctors and nurses with years of experience with Medtronic ITB Therapy^SM have answered some of the common questions their patients and caregivers ask about severe spasticity or ITB Therapy.

How can I play an active role in decisions about my treatment?

Dr. Jennifer Doble says: "The more you know and the more you share with your doctor, the more likely the two of you can work together to successfully control severe spasticity. Here is my list of the most important things you can do to advocate for yourself:

Write up a list of items that you would like to discuss with your doctor, including questions about your treatment and any concerns about medication side effects.
Give one copy of this list of items to the check-in person when you arrive at the office appointment. Ask that the list be placed on your chart for the doctor to review before he or she enters the room.
Keep a second copy of the list of items for yourself and make sure you talk about everything on the list during your conversation.
Always have another person accompany you to the appointment to take notes for you so you can review and understand what was discussed at a later time.
If you are interested in new technology or a medical treatment and your physician is not in favor of it or is unaware of it, ask for a referral for a second opinion.
Remember, there are no dumb questions.... only those that were never asked.”

Jennifer Doble, MD, is a rehabilitation specialist at Associates in Physical Medicine and Rehabilitation in Ypsilanti, Michigan.

How do I know when my baclofen dosage needs to be increased or decreased?

Mary Elizabeth Nelson says: “To manage your spasticity most effectively with ITB Therapy, you should be working with a multi disciplinary team that includes a medical provider and a physical therapist or occupational therapist as appropriate.

With that in mind, the goal of intrathecal baclofen therapy is not to eliminate spasticity. Rather, it’s to achieve functional spasticity control. There’s an art to balancing tone and strength. The balance involves decreasing tone to a level where you have improved function and comfort and yet maintaining enough tone that you can still perform your daily activities.

When you first receive the therapy, the goal is to regularly adjust the dose until there is a noticeable decrease in tone. That’s where the balancing act begins. At that point, it’s a matter of prioritizing your goals. For many people, the goal is to walk more functionally. But you can’t achieve walking until you conquer stretching. So you pick the very first goal—like stretching—and you adjust dosages to reach that goal.

Often it’s better to err on the side of not enough. That’s because increasing a dose too quickly may cause too great a decrease in your tone, which can decrease your function. The benefit of the intrathecal baclofen pump is that if you do notice a decrease in function with an increase in dose, your medical provider can simply decrease the dose back to a more functional level.

In our practice, once we’ve reached an overall level where the patient is comfortable, we start focusing on the pattern of the patient’s day. Very often people with spasticity will experience spasms when they first wake up in the morning. Later in the day their spasticity may increase as they become fatigued. Keeping track of your spasticity fluctuations in a daily diary can help identify regular spasticity patterns. Then, your medical provider can program the pump’s flex dosing feature to maximize spasticity control during those specific times of day.

Teamwork between you, the medical provider who is managing the pump, and the therapist allows for continual assessment of your goals and spasticity control to maximize your independence.’

Mary Elizabeth Nelson, ANP-BC, is a nurse practitioner at the Medical College of Wisconsin in Milwaukee.

What should I plan for regarding my ITB Therapy before traveling this summer?

Dr. Stephen Koelbel says: “There are a few very important things you must consider before heading out of town. First, find out when your pump is due to be refilled and make sure this date doesn’t overlap with your trip. If the dates do coincide, then make arrangements to have the pump refilled prior to your trip.

Next, find out if there is a doctor who offers ITB Therapy in the area you’re visiting. You shouldn’t have a problem if you are near a major metropolitan area. In fact, I was once contacted by a patient from Arizona who was visiting every major ballpark in the country. They were given my name as a physician in the Boston area. I was very happy to help this patient with a refill, and I got to hear some great ballpark stories in the process!

Your doctor may be able to help you find a doctor in the area, or you can use the online directory.

Finally, be sure to carry your Medtronic medical ID card with you, particularly if you will be using an airline. This card may help you pass through security with fewer questions. It also serves as an emergency card if something happens while traveling. Happy travels!”

Stephen Koelbel, MD, practices physical medicine and rehabilitation at South Shore Physiatry and Spasticity Management, in affiliation with Braintree Rehabilitation Hospital, in Braintree, Mass.

Is depression a concern among caregivers?

Dr. Alison Krawiecki says: “Caregiving itself does not cause depression, but it is not unusual for caregivers to experience strong emotions including sadness and anxiety. Often caregivers overlook their own physical or emotional needs in order to prioritize the needs of their loved ones. Over time, this can lead to feelings of anger, sadness, resentment, and exhaustion. These emotions are normal, but when they become more intense it may indicate depression.

Common signs that may point to depression include:

Loss of interest in and satisfaction from previously enjoyed activities.
Feeling sad, down, hopeless, or worthless.
Unintentional change in eating habits, weight gain, or weight loss.
Decreased attention to or interest in personal hygiene or dress.
A change in sleeping patterns (sleeping too much or too little).
Crying spells for no clear reason or just being more tearful than usual.
Becoming easily irritated, restless, or angry.
Feeling your actions don’t measure up.
Thoughts of death or suicide.
Loss of interest in sex.
Increased use of alcohol, tobacco, or other substances.
Physical symptoms that do not respond to treatment.

Talking with a primary care doctor or trained mental health professional early on may prevent the depression from becoming more serious.”

Alison Krawiecki, Psy.D., is a clinical neuropsychologist and health psychologist in private practice in Englewood, CO. She is a member of the Colorado Neurological Institute.

How important is a support network for those receiving ITB Therapy?

Dr. Michael Saulino says: “It is important for my patients who have ITB Therapy to have two strong networks of support—medical and emotional. Often, there are other issues that interrelate with severe spasticity that may need attention after a SynchroMed pump is placed. For example, a wheelchair that requires adjusting, the need for a new brace, or an adverse event. If you are at a reputable medical center that offers comprehensive services, these issues will likely be handled competently and you will find navigating them is easier because you have access to the necessary resources.

It’s also crucial to have an emotional support network. There is tremendous value in having a relationship with someone who has experienced the same symptoms you are feeling. Overall, I find that my patients who have a connection to others with their same condition – often through a support group – have a higher level of understanding and ask more substantive questions about their health. They move through the healthcare system with greater ease and skill. ”

Michael Saulino, M.D., is board-certified in physical medicine and rehabilitation, spinal cord injury medicine, and pain management. He is Clinical Director, Intrathecal Therapy Services at MossRehab in Philadelphia, PA.

How important is physical therapy and exercise with ITB Therapy?

Susan Bennett says: “Physical therapy is essential to improve your function and mobility. Medtronic ITB Therapy (Intrathecal Baclofen Therapy) alone does not help the muscles get stronger or change how you walk or transfer. The pump delivers the medication that calms down the spasticity that interferes with normal movement and muscle activation. When you participate in physical therapy, you retrain the muscles in the tasks or activities you want to resume, like climbing stairs, walking outdoors or in your home, or even sitting on that comfy sofa. These activities take repeated practice and that’s why physical therapy is important.

Depending on your condition, short-term rehabilitation after you receive your pump may be all you need. If you have a progressive disease, however, you may need periodic physical therapy based on any change in symptoms you may experience as a result of your medical condition.

Exercise is also very important. Once a pump is placed, you need to maintain an exercise program to the best of your ability. A physical therapist—preferably one who works in neurologic rehabilitation—can help you develop an exercise routine that targets spastic and tight muscles, muscles that are weak from spasticity, and that all important core strengthening and cardiovascular exercise to promote health and wellness.“

Susan Bennett, PT, DPT, EdD, NCS, MSCS, is clinical associate professor in the Department of Rehabilitation Science at the University at Buffalo in Buffalo, NY.

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Important Safety Information – ITB Therapy

Please follow your doctor's instruction closely because a sudden stop of intrathecal baclofen therapy can result in serious illness (baclofen withdrawal symptoms) such as high fever, changed mental status, muscle rigidity, and in rare cases multiple organ-system failure and death. It is very important that your doctor be called right away if you experience any of the above symptoms.

It is important for you to keep your scheduled refill visits so you don't run out of medication (baclofen) and to understand the early symptoms of baclofen withdrawal. Some patients are at more risk than others for baclofen withdrawal; consult with your doctor.

People who suffer from severe spasticity resulting from cerebral palsy, multiple sclerosis, stroke, brain injury, or spinal cord injury may be a candidate for ITB Therapy. If you have spasticity due to spinal cord injury or multiple sclerosis you must first fail oral baclofen. If you have experienced a traumatic brain injury you must first wait 1 year after the injury to be considered for ITB Therapy. A screening test will help show if you will respond to the intrathecal baclofen. You should not receive ITB Therapy if you have an infection, are allergic to baclofen, or your body size is too small to hold the implantable pump.

The implanted pump and catheter are surgically placed beneath the skin. Surgical complications that you may experience include infection, meningitis, spinal fluid leak, paralysis, headache, swelling, bleeding, and bruising.

The most common and/or serious drug-related side effects of ITB Therapy include loose muscles, sleepiness, upset stomach, vomiting, headaches, and dizziness. Pump failure may cause overdose or underdose of intrathecal baclofen. The signs and symptoms of overdose include drowsiness, lightheadedness, dizziness, respiratory depression (difficulty breathing), hypothermia, seizures, loss of consciousness, and coma. Once the infusion system is implanted, device complications include catheter or pump moving within the body or eroding through the skin. The catheter could leak, tear, kink, or become disconnected, resulting in underdose or no baclofen infusion. Symptoms of underdose include increase or return in spasticity, itching, low blood pressure, lightheadedness, and tingling sensation. These symptoms are often early indications of baclofen withdrawal. The pump could stop because the battery has run out or because of component failure. The pump will sound an alarm when the pump needs to be filled with baclofen, replaced or if there is a problem with the pump. Always inform any healthcare personnel that you have an implanted infusion system before any medical or diagnostic procedure such as MRI or diathermy.

For more information, please read the Lioresal^® Intrathecal (baclofen injection) Full Prescribing Information and the SynchroMed Infusion System Information.

This therapy is not for everyone. Please contact your doctor. A prescription is required.

Lioresal^® is a registered trademark of Medtronic, Inc.

USA Rx Only Rev 0911

Information on this site should not be used as a substitute for talking with your doctor. Always talk with your doctor about diagnosis and treatment information.

Last updated: 20 Feb 2013