Deep Brain Stimulation and Parkinson’s


Download Deep Brain Stimulation and Parkinson’s


Preview text

Deep Brain Stimulation and Parkinson’s
From Decision-making to Daily Life with the Device

ON THE COVER: Richie Rothenberg, MJFF Patient Council Member, who had DBS for Parkinson’s at age 43 | Los Angeles, California. Read Richie’s story on page 11.

People and families with Parkinson’s think about deep brain stimulation (DBS) for different reasons and at different times in their journey.

Early on, some look for general information. Others seek more detailed guidance a few years or more into living with disease. No matter when or why you’re wondering about DBS, there are many common questions: What symptoms does it help? Can it slow disease progression? How long does it work?
Deep brain stimulation is the most common surgical treatment for Parkinson’s disease (PD). To date, more than 160,000 DBS devices have been implanted worldwide. In Parkinson’s, DBS can decrease motor symptoms, such as tremor, slowness and stiffness; lessen medication complications, such as involuntary movement (dyskinesia) or wearing off; and reduce medication needs. But like all currently available PD treatments, it has not yet been proven to slow or stop disease progression. It’s not a cure, and it’s not for everyone.
People report a wide range of emotions when thinking about DBS: hope and optimism for how the treatment may

help, sadness about disease progression, and an understandable hesitation at the idea of brain surgery.
As you consider DBS, give yourself every opportunity to learn and ask questions. Speak with your Parkinson’s doctor and get a second opinion if needed. Talk with your spouse or care partner, family and loved ones. And draw on the experiences of others with PD who’ve had DBS. You can attend a support group or educational seminar or connect one-on-one with a community member who’s living with DBS.
This guide provides information and tips for thinking about, undergoing, and living with DBS. It also answers common questions and discusses the latest research. And it shares the personal stories of people with Parkinson’s and their loved ones. Use it to begin learning about DBS, round out what you’ve read or heard from others, or start or continue a conversation with your doctor or loved ones.

The Michael J. Fox Foundation for Parkinson's Research | Deep Brain Stimulation and Parkinson’s

1

Is DBS for Me or My Loved One?
DBS isn’t for everyone. Because, like all treatments, it doesn’t work for everyone. And because it involves brain surgery, doctors are careful to recommend DBS only in people who are more likely to benefit and less likely to experience certain complications.
Deep brain stimulation typically works best in people who:

HAVE HAD PARKINSON’S FOR AT LEAST FOUR YEARS BENEFIT FROM LEVODOPA

Currently, the procedure is U.S. Food and Drug Administration (FDA) approved for people who have had a diagnosis of PD for at least four years.

DBS treats symptoms that go away or get much better after taking levodopa. One exception is tremor that does not respond to medication. DBS can work for this symptom.

Outside of this — because every person’s course and symptoms are unique — there are no hard and fast rules around when to have DBS. But there are indicators that may point to the right “window.” A person is a good candidate when they have a good response to levodopa and are still physically active but are having trouble with how long their medications work or with involuntary movement (dyskinesia). Many experts consider DBS to be “too early” if motor symptoms, such as tremor, slowness and stiffness, are adequately controlled throughout the entire day and medications don’t cause unacceptable side effects. “Too late” is if, as disease progresses, symptoms such as balance problems or significant cognitive changes develop. These do not respond to DBS and could offset any benefits from surgery.
DBS also does not work for people with atypical forms of parkinsonism, or “Parkinson’s plus” syndromes, which can mimic PD early on. These include Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP) and others. (Learn more about atypical parkinsonism at michaeljfox.org/atypical-parkinsonism.)

In general, DBS works as well as your best “on” time (when medication is working) with levodopa. With DBS, medications last longer and “off” periods (when medication is not working) are reduced. Many patients are able to lower their total daily dose of PD meds after DBS.
The surgery works best for motor symptoms (slowness, stiffness and tremor). It also may help some walking problems — especially those caused by slowness, dystonia (abnormal muscle cramping), or dyskinesia (involuntary movement).
DBS does not work well for balance changes. And it often does not ease non-motor symptoms. But some, such as sleep problems caused by nighttime stiffness or tremor, for example, may improve because motor symptoms improve. DBS does not treat memory, mood or speech changes.

The Michael J. Fox Foundation for Parkinson's Research | Deep Brain Stimulation and Parkinson’s

2

EXPERIENCE MEDICATION-RELATED COMPLICATIONS
These may include troublesome dyskinesia and/or significant “off” time (when Parkinson’s symptoms come back). In some people, “off” time alternates with “on” time (when symptoms are controlled) throughout the day. For example, a person feels “on” for a short while, then has dyskinesia, then is “off.” And this cycle repeats many times in one day. DBS can smooth this out, decreasing dyskinesia and “off” time, and increasing “on” time.

To qualify for DBS, a person should fit all the criteria outlined in this section. This is to ensure the highest likelihood of success and lowest possibility of side effects with surgery. (If you aren’t a candidate or don’t want DBS, there may be other options. See page 18 for more.)
IS THERE AN AGE LIMIT FOR DBS?

DO NOT HAVE SIGNIFICANT THINKING, MEMORY OR MOOD CHANGES
DBS could worsen thinking and memory (cognitive) or mood problems in people who already have significant problems in these areas, such as dementia or uncontrolled depression or anxiety. Those with mild thinking or memory changes and well-managed mood changes often are still eligible.

There is no absolute age cut-off for DBS. But some medical centers find that people who are 70 or older may not experience as robust a response as younger patients. Other factors — such as symptoms, levodopa responsiveness, mood and cognition, and other health conditions — probably are more important to consider than age alone.

HAVE OVERALL HEALTH CONDUCIVE TO SURGERY
Certain heart diseases, blood clotting problems or other medical conditions might make surgery too risky. Doctors consider all your conditions and medications when evaluating for DBS.

The Michael J. Fox Foundation for Parkinson's Research | Deep Brain Stimulation and Parkinson’s

3

What Symptoms Can DBS Help? What Can’t It Help?

Deep brain stimulation mainly helps motor symptoms that get better with levodopa. (Meaning the symptoms temporarily decrease or go away after taking medication.) These may include:
+ Slowness + Stiffness + Shaking (DBS also can help tremor that does not
respond to medication)
+ Mild walking problems, including freezing of gait,
that improve with levodopa
+ Irregular symptom control throughout the day
(motor fluctuations) — “on” time, when symptoms are controlled, alternating with “off” time, when they aren’t
+ Involuntary uncontrolled movement (dyskinesia) + Abnormal, often painful, muscle contractions
(dystonia), such as the toes curling under or foot twisting inward

DBS usually does not help where levodopa doesn’t, such as with:
+ Walking problems, including freezing of gait, that do
not improve with levodopa
+ Balance difficulties + Speech or swallowing problems + Thinking or memory changes + Mood problems, such as depression, anxiety or
apathy (lack of motivation)
+ Bladder, bowel or sexual changes

Not everyone is a candidate for DBS, but those who are may see a substantial benefit in terms of symptom and medication reduction following the procedure.

The Michael J. Fox Foundation for Parkinson's Research | Deep Brain Stimulation and Parkinson’s

4

What Happens in the Operating Room? And Beyond?

BEFORE DBS

If you decide to pursue DBS, a team of expert health care professionals will perform a thorough evaluation of you and your symptoms. This multidisciplinary team may include: a movement disorder clinician (Parkinson’s doctor, nurse practitioner and/or physician assistant), brain surgeon (neurosurgeon), physical therapist, occupational therapist, speech therapist, social worker, dietitian, neuropsychologist (thinking/memory expert) and/or a psychiatrist. These clinicians assess your:
+ Medications and therapies
You’ll describe what medications and other treatments you’re currently taking and what you’ve tried as well as any benefits or side effects.
+ Brain imaging and other tests
These may include detailed memory and thinking exams, administered by a neuropsychologist.

+ Movement and motor symptoms
They’ll examine you when you are both on and off medication to see if and how much symptoms improve with medication as well as if you have dyskinesia or dystonia.
+ Non-motor symptoms
Your clinicians will discuss and treat any mood, swallowing and speech, or thinking and memory changes. They’ll also evaluate for impulse control disorders (such as excessive shopping, eating, cleaning or other activities), which can happen in some people with PD.
+ Other medical problems or concerns relevant
to surgery Your team will review any medical conditions or other factors that may impact surgery or recovery.

HOW DO I FIND A DBS DOCTOR?
Your Parkinson’s doctor may be part of a medical center or team that evaluates people for DBS and performs surgeries. And they may be able to program your device. But some, who do not focus on deep brain stimulation, may not be as familiar with the different devices or programming. They may refer you to another clinician in their practice or to another location that specializes in DBS. (You also can search an online database at mds.movementdisorders.org/directory

for a movement disorder specialist in your area. Be sure to confirm they do DBS.) And ask other Parkinson’s community members about their experiences.
While you can find high-quality DBS care in most locations around the world, some people want or need to travel significant distances for the procedure. Make sure to think ahead about logistics following surgery, such as if clinicians at that center will program the device and how often you’ll need to visit. (Nearby family or friends may provide a place to stay, for example.) And always maintain a relationship with your local neurologist or Parkinson’s specialist, who can help with ongoing care as well as urgent issues.

The Michael J. Fox Foundation for Parkinson's Research | Deep Brain Stimulation and Parkinson’s

5

Together, the group then discusses findings. They talk about what symptoms DBS may help, may not help or may worsen, and potential risks. And they decide on best next steps.
Sometimes, they suggest further testing, treatment, conversation, or observation of specific symptoms, such as mood or cognitive changes. Other times, they recommend DBS and plan logistics, such as:
+ Which DBS device and battery to use
At the time of this writing, three DBS manufacturers offer several different FDA-approved devices. Some have special capabilities and/or rechargeable batteries. (For more on available DBS devices, see page 17.)
+ Where to place wires (also called electrodes or
leads) in the brain Which area of the brain; both sides of the brain or only one side
+ Where to put the battery in the body
In the chest or abdomen; right or left side. (Some people get two batteries, one on each side.)

+ How to do the procedure
With patient awake or asleep; with both electrodes at once or separately to allow for observation and recovery between surgeries
+ What other medical conditions require close
monitoring before and during surgery Anxiety, heart disease, or blood pressure changes, for example
+ What medications to adjust around surgery
You may need to stop aspirin, blood thinners or similar medications for a short period prior to surgery. Doctors also typically recommend you hold Parkinson’s and tremor medications the morning of surgery.
As you meet with team members, talk not only about possible benefits and risks, but also about what you hope to gain with DBS. And describe what symptoms are most affecting or impacting your quality of life. Would you like less dyskinesia, tremor or dystonia? Better walking? Fewer pills each day? To play guitar again? Travel? The more specific, the better. This guides conversations around if and how DBS may help you meet your goals. (No one wants to have surgery only to be disappointed with the outcome.)

“DBS wasn’t the amazing ‘fix all’ that we thought it would be. After my dad, Ade, had DBS, we realized our expectations were too high and had to reevaluate them. If we could go back, we wouldn’t hesitate to have it done, but it has certainly been a journey that is still ongoing.”
— CHARLIE (LAST NA ME WITHHELD),
DAUGHTER OF ADE, 56 | READING, UK

The Michael J. Fox Foundation for Parkinson's Research | Deep Brain Stimulation and Parkinson’s

6

DURING SURGERY
DBS surgery involves two main procedures: placing wires in the brain and placing a battery/electrical stimulator (the neurostimulator) in the chest or abdomen.
+ Placing brain wires
Thin wires, called electrodes or leads, are placed into one or both sides of the brain in areas that control movement. Some people get one lead in each side of the brain in one procedure. Others wait a short period between the first and second wires. (To make sure certain symptoms don’t worsen, for example, or because that’s the center’s protocol.) In rare cases, such as with significant tremor on one side, only one lead is placed in one side of the brain.
The morning of surgery, your doctors will ask that you not take Parkinson’s or tremor medications. They want to see and evaluate your symptoms during the procedure so that they can get the brain wire to the right location. (Sometimes, such as with significant slowness or stiffness that makes it difficult to travel to the hospital, doctors will allow a small medication dose.)
At most centers, right before surgery, doctors will position a small, lightweight frame on your head and perform brain imaging. This helps them guide the wires to the right spot in the brain.

This may be a better option for someone with significant anxiety or other symptoms that make it difficult to temporarily hold medication or to be awake for part of the procedure. Awake and asleep surgery both have pros and cons but, in general, results seem similar.
Surgery usually lasts several hours. Many people feel an immediate, sometimes significant, lessening of symptoms. This is the result of minor, expected swelling around the end of the brain wire. As swelling fades, this response fades. But benefits return when the device is turned on and programmed several weeks later.
Most people spend one or two nights in the hospital for recovery and monitoring.
+ Placing the neurostimulator
One or two weeks after lead placement, the surgeon implants a battery-operated device, the neurostimulator, below the collarbone or in the abdomen. This is connected to the brain leads with an extension wire that runs underneath the skin. (Some people get two batteries, one on each side, to connect to each brain lead.) When programmed by your clinician several weeks later, the neurostimulator sends small, carefully controlled electrical pulses to the brain through the leads. This stimulation interrupts abnormal brain cell signaling to decrease symptoms.

During the procedure, a person typically is awake for some of the time. This allows them to describe benefits or side effects and lets doctors monitor their symptoms and response with examination and brain recordings. Some centers now offer DBS while a person is asleep, using brain imaging (MRI) to correctly place the wires.

For this procedure, you are put to sleep (under general anesthesia) and go home the same day.
The components of DBS and surgical processes to implant them are essentially the same no matter what device you get or where you have surgery. But details differ across devices (see page 17 for more) and specific procedures

“My husband, Robert, had DBS in 2019, just after his 40th birthday. It’s made a huge difference in both of our lives. He still takes a lot of medication, but his quality of life has improved immensely.”
— LYNSAY JAQUES, WIFE OF ROBERT, 41 | NOTTINGHAMSHIRE, UK

The Michael J. Fox Foundation for Parkinson's Research | Deep Brain Stimulation and Parkinson’s

7

WHAT ARE THE POTENTIAL RISKS WITH DBS?
Complications with DBS typically are rare. The most serious potential risks of the surgery are bleeding in the brain and infection.
Bleeding happens in one to three percent of people. Most often it is minor. If it is more significant, it could cause a stroke, language problems or seizures, for example.
Infection occurs in about three to four percent of surgeries. Most commonly, infection happens near the neurostimulator (in the chest or abdomen), usually

weeks or months after the procedure. Treatment may include removal of the neurostimulator, intravenous antibiotics and re-implantation of a new device. If the infection hasn’t spread, the brain leads can stay in place and no additional brain surgery is needed. Rarely, infection starts in the scalp or the brain, which may require removal and re-implantation of the electrodes.
Another possible, but only occasional, complication is placement of a brain lead outside of the ideal or intended location. In these situations, DBS may not be able to adequately control symptoms or may cause side effects. If this happens, doctors may consider surgery to reposition the lead or place a new one.
Rarely, over time, a lead may break, disconnect from the battery, or cause other problems. If this happens, surgery may be necessary to repair or reconnect the wire.

and timing can vary from medical center to medical center. AFTER SURGERY

the battery, and, if you wish, adjust settings at home within parameters set by your clinician.

A few weeks after surgery, you’ll see your movement disorder clinician in the office. At this visit:
+ Your clinician turns on the DBS and programs
settings for your symptoms To find your settings, they test different combinations of electrical stimulation and observe how symptoms respond and if any side effects occur. So, it’s often best to hold Parkinson’s medications the morning of this office visit, if possible. Programming takes at least an hour or more.
+ Your doctor prescribes any medication
adjustments Typically you’ll begin to gradually decrease and sometimes discontinue certain medications. Most people can significantly decrease Parkinson’s medications over time.
+ You learn how to use the patient programmer
This allows you to turn the device on and off, check

From then on, you’ll visit your clinician every few weeks or months for continued adjustment. Over time, you and your doctor will determine the best combination of DBS settings and medication to control your symptoms with no or few side effects. Finding this combination can take six months or more. After that, your clinician will, a few times per year, check the device battery and function and adjust settings as necessary.
Certain DBS devices allow you to meet with your clinician and get programming remotely, from your home or other location. (See page 17 for more.) For some, this provides greater comfort and ease of living with DBS.
After a few years or even decades, the battery will need replacement. How long it lasts depends on your device and settings. Some rechargeable batteries, which require recharging every few days or weeks, can last 15 years or more. (Your clinician will check your battery each visit.) Battery replacement usually is an outpatient procedure under general anesthesia, in which you go home the same day.

The Michael J. Fox Foundation for Parkinson's Research | Deep Brain Stimulation and Parkinson’s

8

“WHO KNOWS WHERE WE’D BE WITHOUT DBS”
BY MARISSA YOUNG, DAUGHTER OF MICHAEL, 59 | STERLING, MASSACHUSETTS

My dad, Michael, had Parkinson’s since 2000. In 2019, at age 57, he got DBS. The previous summer, he experienced psychosis (hallucinations and delusions), which was brought on by Parkinson’s medication. This ultimately led us to DBS because his body couldn’t take any more medicine. (Meaning he couldn’t tolerate more medication for his Parkinson’s symptoms, because that would worsen psychosis.)
DBS really improved his fine motor skills. And his sleep has gotten much better. He still has some rough nights, but he can consistently get a few good hours of sleep. His medicine also has been decreased since DBS. Before, he was taking pills every two hours. Now, it’s every 2.5 hours and we haven’t had to change it over the past few years.
Unfortunately, his cognition (memory and thinking) are much worse. He gets confused easily and overwhelmed if too much information is thrown at him. He can no longer work with wood, numbers and measurements like he used to.

For anyone considering DBS, I’d offer these tips:
+ Talk to people who’ve had DBS.
+ Write everything down. This includes all the
information you get from doctors or others and any questions you have.
+ Make sure you have a support system to
help you during and after surgery. For my dad, that was me, my mom and my sister. The day of surgery, my sister and I helped my mom (texting family members updates, for example). And have someone to drive you to doctor appointments after surgery. My mom and I always went so we both got the information directly from doctors and we could tell them about symptoms my dad may not have noticed.
+ Prepare (or ask family and friends to make)
food before surgery. It’s nice to have meals ready when you get back home.

The surgery itself wasn’t too bad but neither my dad nor my family was prepared for the recovery process. That was hard on all of us. Many people say they have a “honeymoon” phase with little or no symptoms after surgery. My dad had to use a walker for a few months after surgery, even though he’d never used one before. (Now he’s back to no walker.)

+ If you live far from the hospital, stay in a
nearby hotel the night before surgery. For us, this made getting to the hospital at 6 a.m. much easier. (We live an hour from the hospital.)
+ Don’t prepare for DBS to be a cure. And do
prepare for the recovery — it takes a long time for medications and DBS stimulation to be in sync! I think maybe we expected DBS to do more. But overall, it did help! Who knows where my dad would be today without it — he may have gotten worse.

The Michael J. Fox Foundation for Parkinson's Research | Deep Brain Stimulation and Parkinson’s

9

Preparing to load PDF file. please wait...

0 of 0
100%
Deep Brain Stimulation and Parkinson’s