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Parkinson’s Disease:

Guide to Deep Brain

Stimulation Therapy


Michael S. Okun, MD

Medical Director, National Parkinson Foundation Center of Excellence

Co-Director, Center for Movement Disorders and Neurorestoration

University of Florida, Gainesville

Pamela R. Zeilman, MSN, ANP-BC

Center for Movement Disorders and Neurorestoration

University of Florida, Gainesville

Your generosity makes this publication possible

The National Parkinson Foundation is proud to provide these educational materials at no cost to individuals around the globe. If you find these materials helpful, please consider a gift so that we may continue to fight Parkinson’s on all fronts: funding innovative research, providing support services, and offering educational materials such as this publication. Thank you for your support.

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The information contained in this publication is provided for informational and educational purposes only and should not be construed to be a diagnosis, treatment, regimen, or any other healthcare advice or instruction. The reader should seek his or her own medical advice, which this publication is not intended to replace or supplement. NPF disclaims any responsibility and liability of any kind in connection with the reader’s use of the information contained herein.

The National Parkinson Foundation has not examined, reviewed or tested any product, device, or information contained in this booklet, nor does the National Parkinson Foundation endorse or represent any product, device or company listed in this booklet.

Second Edition - 2014 Parkinson’s Disease Deep Brain Stimulation A Practical Guide for Patients and Families By Michael S. Okun, MD, and Pamela R. Zeilman, MSN, ANP-BC Deep Brain Stimulation: Practical Guide for Patients and Families Deep Brain Stimulation: Practical Guide for Patients and Families Table of Contents Chapter 1 Introduction to Surgical Therapies for Parkinson’s Disease............4 Chapter 2 An Overview of Deep Brain Stimulation (DBS) Therapy...............8 Chapter 3 Risks and Complications of DBS

Chapter 4 Is DBS Right for You?

Chapter 5 Preparing for Surgery

Chapter 6 The Surgery

Chapter 7 After Surgery Care

Chapter 8 Adjustment of Stimulation

Chapter 9 Special Information and Warnings

Chapter 10 Emerging Changes and Future Directions in DBS

Appendix A Glossary of terms

Appendix B Resource list

About the Authors

Deep Brain Stimulation: Practical Guide for Patients and Families

Chapter 1 Introduction to Surgical Therapies for Parkinson’s Disease

Parkinson’s disease (PD) affects an estimated one million Americans including men and women of all ages and races, though it is slightly more common in men. The cause of PD is not yet known, and currently a cure does not exist. There are, however, many excellent “symptomatic” treatments for PD. Medications, exercise, nutrition, holistic approaches, and surgical treatment all have the potential to reduce symptoms and to improve quality of life. Common symptoms of PD include shaking (tremor), slowness of movement (bradykinesia), muscle stiffness (rigidity), and difficulty with balance (postural instability). These are referred to as the “motor” symptoms of PD. There are also many non-motor symptoms including most prominently depression, anxiety, apathy, fatigue, and sexual dysfunction.

During the initial stages of PD (i.e. the first several years after a diagnosis), medications typically control symptoms in the majority of patients. As the disease progresses, however, individuals may need to take more medications, increase the dosages, and, in many cases, take their medications more frequently. As disease duration increases, people with PD may notice that throughout a typical day they will experience periods of adequate symptom control (“on time”), periods where symptoms are much more noticeable (“off time”), and periods where peak medication levels (usually an hour after taking a medication dose) produce involuntary movements. These involuntary movements are referred to as dyskinesia. When individuals change from one of these three states to another, they are said to have motor fluctuations.

The aim of this book is to describe a type of surgical treatment that can be utilized to reduce PD symptoms in a subset of carefully selected individuals with a specific symptom or symptoms potentially responsive to this type of therapy. The treatment is known as deep brain stimulation (DBS). DBS is a proven and effective surgery that can be applied to treat some, but not all, of the disabling symptoms of PD. There are several other surgeries that have been utilized to treat the symptoms of PD, and these include thalamotomy, pallidotomy, and subthalamotomy. We will discuss each of these alternative techniques, all of which rely on making a lesion in the brain, in the pages that follow.

When applied with the appropriate level of expertise, these therapies may also be options for individuals with PD.

Pallidotomy, thalamotomy, and subthalamotomy Pallidotomy, thalamotomy, and subthalamotomy are types of surgical procedures in which a tiny heated probe is inserted into a precise region of the brain to destroy tissue.

When the region known as the globus pallidus internus is lesioned, we refer to the procedure as a pallidotomy. Similarly, when the part of the brain called the thalamus is treated, we call it a thalamotomy. And when the subthalamic nucleus is lesioned, we refer to the procedure as a subthalamotomy. Of these three procedures, pallidotomy has been the one most widely applied over the last several decades to help relieve symptoms of PD.

Deep Brain Stimulation: Practical Guide for Patients and Families

A pallidotomy lesion has the potential to improve tremor, rigidity, bradykinesia, motor fluctuations, and, in a few special cases, walking and balance. Pallidotomies are only effective against PD symptoms that respond to levodopa (Sinemet), with the exceptions of tremor and dyskinesia. Tremor and dyskinesia may potentially respond to pallidotomy even if medications are not effective. Pallidotomy has its advantages over DBS. These advantages include: no implanted wires or batteries, and no need for electronic programming sessions to fine-tune the parameters. Also, there are no hardware malfunctions to deal with, and once the initial surgical procedure is done, there is no risk of infection from an implanted device. For those who have difficulty travelling for the DBS programming (from another region or country), or in cases when DBS is too expensive, or not available, pallidotomy may be a good choice. Pallidotomy can be as effective as DBS in treating the symptoms of PD, but the lesion must be placed in exactly the right spot. Recent studies have revealed that the benefits of pallidotomy can be long-lasting. Unlike DBS, pallidotomy should not be performed on both sides of the brain, and this is one major limitation of this surgery. Performing two pallidotomies can lead to permanent speech, swallowing, and cognitive problems. Patients with an existing pallidotomy who require a second surgery will usually have a DBS placed on the opposite side of the brain.

Thalamotomy is a procedure that is rarely performed in PD because it is usually only effective for tremor. Subthalamotomy, however, has been gaining popularity as this procedure can provide the same types of benefits as pallidotomy. Many medical groups have performed the surgery safely on both sides of the brain. Subthalamotomy is the PD procedure of choice in Cuba, and research suggests that it is very effective.

A few cases of subthalamotomy do, however, develop a side effect called hemiballism (uncontrollable flinging of one arm and/or leg), although in most cases it is a transient adverse effect.

DBS DBS differs from pallidotomy, thalamotomy, and subthalamotomy in that it does not permanently destroy brain tissue. The procedure is entirely reversible, usually with minimal damage to any brain tissue. DBS involves the surgical placement of a thin wire (with four electrical contacts at its tip) into a very specific and carefully selected brain region. The three main parts of the brain where the DBS lead (pronounced “leed”) can be placed are the globus pallidus internus, the thalamus, and the subthalamic nucleus.

The DBS lead is connected to a pacemaker-like device that is implanted in the chest region below the collarbone. This device, called the neurostimulator or implantable pulse generator (IPG), contains the battery and computer source that generates the electrical pulses that will be delivered via the lead to the brain. The system can be turned on or off by the patient or the clinician. In addition, the clinician can select which one or more of the four electrodes on each brain lead that are to be activated to provide electrical stimulation. This process allows electrical stimulation to be delivered to a very precise part of the brain.

Deep Brain Stimulation: Practical Guide for Patients and Families

The DBS programmer (e.g. a doctor, nurse practitioner, physician assistant, or other qualified staff member) can adjust a variety of electrical parameters or settings to control the amount of stimulation provided. These adjustments are referred to as “programming” the DBS system. The adjustments allow the clinician to maximize the benefits and minimize the side effects. This adjustability is a benefit of DBS that is not available with pallidotomy, thalamotomy, or subthalamotomy. The reasons many patients cite for choosing DBS over a lesioning procedure include: the device can be programmed and reprogrammed for symptoms and symptom changes; the procedure can be performed safely on both sides of the brain; and the procedure is reversible.

This book was designed as a practical guide to explain the complete process required for patients and families considering DBS therapy. The content describes everything from the decision to have surgery and the day of surgery to surgical recovery and DBS programming. While the information contained in this book is intended to facilitate a discussion of DBS with family, friends, and health care team members, it is not meant to replace the advice of expert health care professionals involved in your care.

Deep Brain Stimulation: Practical Guide for Patients and Families

–  –  –

• Consult with a movement disorders specialist. A movement disorders specialist is a neurologist who has completed specialized training in PD and movement disorders, usually through a one to two year fellowship (make sure you ask for credentials).

There are also neurologists in practice who have become experts in this area through their experience caring for many patients, and by taking continuing medical education courses.

• Do your homework. Learn all you can about DBS and call the centers you are considering and ask questions about the care they provide. Make sure that you choose a DBS center with an interdisciplinary team of health care professionals.

These professionals should have the training, technology, and expertise required to provide specialized and expert DBS therapy. Make sure the interdisciplinary team has an interdisciplinary team meeting where your case will be discussed by everyone who evaluated you (prior to any surgery). This type of collaboration is considered an essential element to the success of this procedure.

• Be prepared to invest a significant amount of time, energy, and travel for both pre-and post-operative appointments. A published survey conducted by the DBS Society (Stereotactic and Functional Neurosurgery, 2005) revealed the need for a significant number of post-operative visits for both DBS programming and medication adjustments. These visits are most frequent during the first 6 months following implantation, and many experienced centers require monthly visits for the first six months. Undergoing DBS therapy requires a large emotional, physical, and possibly financial commitment depending on your insurance status. These are all important factors to consider before an operation.

• Make sure to ask who will be programming the deep brain stimulator, and what kind of follow-up you can expect.

Deep Brain Stimulation: Practical Guide for Patients and Families

–  –  –

“The last 5 years before Sam had his brain surgery were very hard. I had to help Sam with everything including getting dressed, getting out of bed, taking a bath; it was emotionally draining. The joy was taken out of our lives. I felt more like a nurse than a wife. We almost never socialized as it was just too difficult.

He is like a new man since having the surgery. He can do almost everything for himself now. He doesn’t need his walker anymore, and I only need to help him get dressed in the morning before his medication starts working. We aren’t afraid to go out to dinner or shopping because he doesn’t shake as badly and he doesn’t get stuck or frozen. The surgery gave us both back our independence and our marriage; life is good again, we are truly blessed and grateful.”

- Barabara Deep brain stimulation (DBS) is a surgical therapy used for the treatment of Parkinson disease (PD). During DBS surgery, a special wire, called a lead, is inserted into a specific area of the brain. The lead, which has four electrodes, delivers electrical currents to precise brain locations responsible for movement, regulating the abnormal brain cell activity that causes symptoms such as tremor and gait problems. It is important to keep in mind that DBS can only help relieve the symptoms of Parkinson’s, but it does not cure or stop its progression.

Modern DBS was developed in France in 1987 by professor and neurosurgeon Dr.

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