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Transcript

Living With a Brain Stimulator: What Patients Need to Know · Tremor & Parkinson's Surgery Explained with Dr. Wu

• 0:00
  SPEAKER_00: Having a brain stimulator sounds like the kind of thing that should change almost everything about your daily life.
• 0:05
  SPEAKER_00: Can I shower normally?
• 0:06
  SPEAKER_00: Can I go through airport security?
• 0:08
  SPEAKER_00: What about the batteries?
• 0:09
  SPEAKER_00: I'm Dr.
• 0:09
  SPEAKER_00: Chen Yang Mu.
• 0:10
  SPEAKER_00: I'm a neurosurgeon specializing in deep brain stimulation for Parkinson's disease and other movement disorders.
• 0:16
  SPEAKER_00: And these are the questions people start asking me once the surgery stops being the scary part and they start thinking about the logistics, what it actually means to live with the device.
• 0:24
  SPEAKER_00: For most people, everyday life with DBS is much more normal than they would expect.
• 0:28
  SPEAKER_00: But there are a few things you really do need to know.
• 0:31
  SPEAKER_00: One thing patients don't always realize before surgery is that you're also going to have a patient controller, basically a remote for the DBS system.
• 0:38
  SPEAKER_00: But you're not sitting at home programming your own brain, and hopefully, neither is anyone from your family.
• 0:44
  SPEAKER_00: The DBS team handles all the programming.
• 0:46
  SPEAKER_00: Depending on which system you have and how we've set it up, the controller may allow you to check whether the device is on, check the battery, and sometimes make limited adjustments within a range we've already established.
• 0:57
  SPEAKER_00: The way I like to think about it is that we prescribe the stimulation much like we would prescribe medications.
• 1:02
  SPEAKER_00: That's the programming process that we go through in the office.
• 1:05
  SPEAKER_00: Within the programs we prescribe, we can give you some flexibility to increase or decrease stimulation a little bit, just like if we were to tell you to take an additional pill as needed for certain symptoms.
• 1:16
  SPEAKER_00: So you aren't going to accidentally press the wrong button and completely reprogram your DBS.
• 1:21
  SPEAKER_00: That's just not possible.
• 1:22
  SPEAKER_00: There are checks and balances in place to make sure that things like that don't happen.
• 1:26
  SPEAKER_00: For most patients, once we have everything working well, the controller isn't something you need all the time.
• 1:32
  SPEAKER_00: It's there when you need it to make small changes or to check on the device.
• 1:36
  SPEAKER_00: Now, because this is a device that provides therapy through electricity, there needs to be a battery.
• 1:41
  SPEAKER_00: And that is part of the implanted propulse generator that is implanted just under your collarbone over your chest wall.
• 1:47
  SPEAKER_00: And so the next question becomes do you have to charge the battery?
• 1:51
  SPEAKER_00: Well, that depends on which kind of battery you have.
• 1:54
  SPEAKER_00: And this is a decision that you will make with your DBS team before the surgery itself.
• 1:58
  SPEAKER_00: Some systems are rechargeable and others are not.
• 2:02
  SPEAKER_00: If you have a rechargeable system, charging becomes part of your routine.
• 2:05
  SPEAKER_00: How often you need to charge depends a little bit on the device and how much energy your settings use.
• 2:10
  SPEAKER_00: But as a general rule, most do find charging the device about once a week, anywhere between 30 minutes to an hour at a time.
• 2:17
  SPEAKER_00: The timing really depends more on your preference.
• 2:19
  SPEAKER_00: Some prefer to charge more frequently for shorter amounts of time, others less frequently for longer.
• 2:25
  SPEAKER_00: So the specific routine matters less than the fact that you actually have a routine and you're keeping the device charged up.
• 2:32
  SPEAKER_00: You don't want to wait until the battery is almost empty and then suddenly remember that you forgot to charge it.
• 2:37
  SPEAKER_00: If the battery runs out, the symptoms being treated by the DBS will come back quickly.
• 2:41
  SPEAKER_00: Now, if you have a non-rechargeable battery, there's nothing to do.
• 2:45
  SPEAKER_00: There's no need to charge it because it is non-rechargeable.
• 2:48
  SPEAKER_00: These batteries often last somewhere around three to five years, although that varies again quite a bit depending on the device and how much energy your settings require.
• 2:56
  SPEAKER_00: With the non-rechargeable battery, one thing I do recommend is checking the battery status at least once a month.
• 3:02
  SPEAKER_00: We don't want you to wake up one morning and discover that the battery is completely depleted and your symptoms that have been getting worse over time are now fully back.
• 3:10
  SPEAKER_00: If you use your remote to connect with the device, the system will give us a warning with a bit of a buffer so we can plan a replacement.
• 3:17
  SPEAKER_00: So while the non-rechargeable may last three to five years, the rechargeable batteries last much longer, often 15 years or more, but obviously require you to keep up with the charging on a weekly basis at least.
• 3:28
  SPEAKER_00: So there's a trade-off.
• 3:29
  SPEAKER_00: More maintenance along the way with a rechargeable battery versus less maintenance day to day, but another replacement surgery sooner with a non-rechargeable battery.
• 3:37
  SPEAKER_00: So it all comes down to a matter of preference.
• 3:39
  SPEAKER_00: Neither choice is automatically right for everybody.
• 3:42
  SPEAKER_00: So what does happen when the battery dies?
• 3:44
  SPEAKER_00: Do you have to do surgery again and start all over?
• 3:47
  SPEAKER_00: Well, no, we don't have to do surgery to replace the electrodes, the wires that go into the brain.
• 3:53
  SPEAKER_00: Usually the battery or implantable pulse generator is generally implanted under the skin on the chest.
• 3:59
  SPEAKER_00: When it reaches the end of its service time, we replace that generator while leaving the electrodes in the brain where they are.
• 4:05
  SPEAKER_00: So we're not taking the electrodes out and starting the entire operation over again.
• 4:10
  SPEAKER_00: The battery replacement is a much smaller procedure than the original DBS implantation.
• 4:14
  SPEAKER_00: And it's usually a same-day procedure that takes less than an hour.
• 4:16
  SPEAKER_00: So when I tell someone years later that the battery needs to be changed, we're generally talking about the chest portion of the system only, not repeating their brain surgery.
• 4:25
  SPEAKER_00: Now, what about activity?
• 4:26
  SPEAKER_00: Some of the questions I get are about showering and swimming.
• 4:29
  SPEAKER_00: Can I shower?
• 4:30
  SPEAKER_00: Can I swim?
• 4:30
  SPEAKER_00: Well, yes, long term, people with DBS can usually shower, swim, exercise, and live normally.
• 4:36
  SPEAKER_00: The whole point of DBS is to allow you to do more, not less.
• 4:40
  SPEAKER_00: The important distinction is the period right after surgery when you're still healing.
• 4:43
  SPEAKER_00: You have incisions that need to heal, so early on, we give you very specific instructions about showering, getting the incisions wet, swimming, lifting, and exercise.
• 4:52
  SPEAKER_00: So make sure to follow those instructions, knowing that those restrictions are temporary.
• 4:57
  SPEAKER_00: Having DBS does not mean you spend the rest of your life avoiding normal activity.
• 5:00
  SPEAKER_00: Once everything has healed and your surgical team has cleared you, the goal is to get you back to normal life.
• 5:06
  SPEAKER_00: Now, what about travel, airport security?
• 5:09
  SPEAKER_00: This comes up constantly in my practice.
• 5:11
  SPEAKER_00: Yes, you can travel with DBS and you can fly, but airport security is one of those situations where you should remember that you have an implanted electronic device.
• 5:20
  SPEAKER_00: Here's how I personally advise my patients, and I tend to be a little more cautious about this.
• 5:24
  SPEAKER_00: At airport security, I recommend carrying your device ID card, telling the security officer that you have an implanted medical device, and asking for a hand pat down rather than walking through the security gate.
• 5:35
  SPEAKER_00: Now, the chance of an actual problem happening if you walk through that security gate is low, but electromagnetic interference has been reported in situations like this.
• 5:44
  SPEAKER_00: And I've seen devices malfunction because of these interactions.
• 5:47
  SPEAKER_00: So if there's an easy alternative that avoids the exposure altogether, I think that makes sense.
• 5:52
  SPEAKER_00: And if we take that conservative approach even further, the same idea actually applies to security systems at concerts, stadiums, and other venues.
• 6:01
  SPEAKER_00: If you can avoid them, avoid them.
• 6:03
  SPEAKER_00: It's also important to bring your patient controller, that remote we just talked about as well.
• 6:07
  SPEAKER_00: Because if you do have to pass through one, it's even safer if you can turn your DBS off temporarily at least, or switch it into what we call an MRI safe mode.
• 6:15
  SPEAKER_00: When you do walk through, and if you have to, walk through normally and don't stop or linger or stand next to the metal detector.
• 6:22
  SPEAKER_00: Also, if possible, avoid security wands altogether, especially if they're going to be in close proximity to the device at the chest.
• 6:29
  SPEAKER_00: Even though they're smaller and generate a smaller field, it is more focused, especially if waved over the system, it's going to be more of a problem.
• 6:36
  SPEAKER_00: Again, this is an ultra-conservative approach that avoids unnecessary electromagnetic exposure when there's usually a simple alternative.
• 6:44
  SPEAKER_00: At the same time, I haven't really seen any issues with anti-theft systems at stores or malls, so I generally wouldn't worry about those as much.
• 6:51
  SPEAKER_00: As a good general rule, if you have to wait in line to pass through security and go through a detector, that's when to be more aware of avoiding the security systems.
• 6:59
  SPEAKER_00: And that brings us to a more general question.
• 7:01
  SPEAKER_00: What can actually interfere with the DBS system?
• 7:04
  SPEAKER_00: Now, because the DBS is an implanted electronic system, people sometimes start worrying about every electronic device around them.
• 7:11
  SPEAKER_00: Things like your phone, the microwave, the television, your laptop.
• 7:15
  SPEAKER_00: That's generally not where the concern is.
• 7:17
  SPEAKER_00: Strong magnetic or electromagnetic fields are what we pay more attention to.
• 7:21
  SPEAKER_00: Things like MRI scanners, industrial welding equipment, powerful magnets, and again, certain security systems.
• 7:27
  SPEAKER_00: Smaller devices like phones, headphones, and magnetic accessories can contain magnets as well, but these are usually too weak to cause a problem.
• 7:36
  SPEAKER_00: And from a distance standpoint, most of these other things are devices that you generally are not putting directly over your chest and near enough to the device to cause a problem.
• 7:44
  SPEAKER_00: But again, as a good general rule, if you're about to do something involving an unusual piece of electrical equipment or a powerful magnet and you're wondering, is this okay with DBS?
• 7:54
  SPEAKER_00: Don't be afraid to ask.
• 7:55
  SPEAKER_00: Now, one thing that I glossed over a little bit but really want to talk about specifically is MRI.
• 8:00
  SPEAKER_00: Can you have an MRI?
• 8:01
  SPEAKER_00: Having DBS does not automatically mean that you can never have an MRI again.
• 8:05
  SPEAKER_00: That's an important distinction and something that is often a misconception.
• 8:09
  SPEAKER_00: Many modern DBS systems are what we call MRI conditional.
• 8:13
  SPEAKER_00: That means you can have certain MRIs as long as the specific safety requirements for your system are followed.
• 8:18
  SPEAKER_00: So as long as the right conditions are met, you can have an MRI.
• 8:22
  SPEAKER_00: What those requirements or conditions are depends on the exact DBS device, the MRI scanner, and what part of your body is being scanned.
• 8:29
  SPEAKER_00: So if another doctor orders an MRI, tell them you have a DBS.
• 8:33
  SPEAKER_00: Make sure that the imaging center has your DBS device information before you show up for the scan, and then they can confirm whether that particular MRI can be done and what conditions need to be followed.
• 8:43
  SPEAKER_00: Don't assume the answer is no, because more often than not, an MRI can be done with the right expertise.
• 8:48
  SPEAKER_00: But also, don't just walk into an MRI scanner without making sure everybody knows that you have the device because ultimately the technicians, the radiologists will need to prepare accordingly.
• 8:58
  SPEAKER_00: Now, what about other medical procedures?
• 9:00
  SPEAKER_00: What if you're lucky enough to have to have other things done?
• 9:02
  SPEAKER_00: The same general rule applies if you're seeing another doctor, dentist, surgeon, physical therapist, or imaging center.
• 9:08
  SPEAKER_00: Tell them that you have an implanted DBS system.
• 9:11
  SPEAKER_00: Certain procedures and pieces of medical equipment require precautions because of the DBS.
• 9:16
  SPEAKER_00: Now, there's one procedure I do think is worth knowing by name is therapeutic diathermy.
• 9:21
  SPEAKER_00: Diathermy is a treatment that uses electrical or electromagnetic energy to deliberately heat tissues deep inside the body.
• 9:27
  SPEAKER_00: It may be used in some physical therapy or other medical settings for things like pain or muscle problems.
• 9:33
  SPEAKER_00: Now, that should not be used in someone with a DBS.
• 9:36
  SPEAKER_00: The energy can interact with the implanted wires and create dangerous heating, including around the electrodes, even in the brain.
• 9:43
  SPEAKER_00: Other things like certain types of surgical equipment may still be able to be used, but the doctors performing the procedure need to know about the DBS so they can use the appropriate precautions.
• 9:53
  SPEAKER_00: Ultimately, just make sure your care team knows what's implanted.
• 9:56
  SPEAKER_00: That's your job.
• 9:56
  SPEAKER_00: The job of the other providers is figuring out what precautions need to be taken and certainly contacting the DBS team if necessary.
• 10:04
  SPEAKER_00: Now, say you've had DBS for a number of years and what happens if it suddenly stops.
• 10:08
  SPEAKER_00: Let's say your tremor suddenly comes back or your stiffness gets much worse, or you feel like you've gone from a good day to a very bad day almost overnight.
• 10:17
  SPEAKER_00: One of the first things we would want to know is whether the DBS system is still on and whether the battery is okay.
• 10:22
  SPEAKER_00: That's where the controller becomes useful.
• 10:24
  SPEAKER_00: So using your patient controller or the remote, you can check the device, check the battery.
• 10:28
  SPEAKER_00: Sometimes the explanation is really that simple that the device somehow got turned off accidentally.
• 10:34
  SPEAKER_00: But if the system appears to be working normally and your system suddenly have changed, make sure to call your DBS team.
• 10:40
  SPEAKER_00: I don't want somebody spending three or four days at home pressing buttons and trying to diagnose the problems themselves.
• 10:46
  SPEAKER_00: Now there is another point that's particularly important for people with Parkinson's disease.
• 10:51
  SPEAKER_00: Very rarely, someone who has depended on DBS for a long time can become quite sick if stimulation stops completely and abruptly.
• 10:58
  SPEAKER_00: It's almost like withdrawing from the DBS system.
• 11:01
  SPEAKER_00: So if you know the stimulation has stopped and you're getting worse quickly, things like severe stiffness, major difficulty moving muscles, that is something to address urgently.
• 11:11
  SPEAKER_00: If that is happening, you should seek emergency medical evaluation and let them know that your DBS stimulation may have stopped.
• 11:18
  SPEAKER_00: Like I mentioned before, with routine battery monitoring, we're usually able to identify and replace a battery well before it reaches that point.
• 11:24
  SPEAKER_00: But again, I want to emphasize the importance of checking on your battery on a regular basis if you have a non-rechargeable system and if you have a rechargeable system, making sure you can keep up with the recharging.
• 11:34
  SPEAKER_00: Another question I get frequently is if you feel the device.
• 11:37
  SPEAKER_00: Usually, yes.
• 11:38
  SPEAKER_00: You can generally feel the pulse generator under the skin in your chest.
• 11:41
  SPEAKER_00: Some patients can also feel parts of the connecting wire, specifically the part that is along the neck under the skin, and more commonly, actually, the connecting wire that is just above and behind the ear.
• 11:53
  SPEAKER_00: Now, how noticeable it actually is varies.
• 11:55
  SPEAKER_00: Early after surgery, you're obviously much more aware of everything because the incisions are healing, they're swelling there, and the tissues are sore.
• 12:02
  SPEAKER_00: Now, several months later, you'll still feel the hardware.
• 12:05
  SPEAKER_00: It's not going anywhere.
• 12:06
  SPEAKER_00: We don't want it going anywhere.
• 12:08
  SPEAKER_00: For most people, it becomes something they know is there rather than something they're constantly feeling.
• 12:12
  SPEAKER_00: And a related question I get is can you sleep normally with the device?
• 12:16
  SPEAKER_00: Well, once everything is healed, most patients sleep normally.
• 12:19
  SPEAKER_00: Early on, the chest or the scalp incisions may be sore, so you'll naturally find certain positions to be more comfortable than others.
• 12:25
  SPEAKER_00: And that's temporary.
• 12:26
  SPEAKER_00: That's part of the healing process.
• 12:28
  SPEAKER_00: Long term, the device shouldn't dictate how you sleep.
• 12:31
  SPEAKER_00: If something around the hardware becomes newly painful or swollen or suddenly feels different, then make sure to let your DBS team know.
• 12:38
  SPEAKER_00: Now, if we look at all the things that I've talked about here: charging device cards, airport security, magnets, MRI, battery replacement, programming, and other medical procedures and how to approach them, it can start sounding like you're going to spend your entire time managing this device.
• 12:53
  SPEAKER_00: But in reality, those are things that become habit and a worthwhile trade-off for the benefit that you get from DBS.
• 12:58
  SPEAKER_00: You learn how to use the controller.
• 13:00
  SPEAKER_00: If you have a rechargeable system, you develop a charging routine.
• 13:03
  SPEAKER_00: You carry your device information in your wallet or your purse.
• 13:06
  SPEAKER_00: You tell other medical professionals that you have a DBS when it's relevant.
• 13:10
  SPEAKER_00: And you can come back periodically so we can check the system, make programming adjustments if necessary, and monitor the battery.
• 13:17
  SPEAKER_00: These things ultimately become routine.
• 13:19
  SPEAKER_00: The way I think about it is that DBS should be something working in the background of your life, not something you're constantly managing in the foreground.
• 13:26
  SPEAKER_00: The goal is for you to spend less time thinking about your Parkinson's or central tremor, not more time thinking about the device.
• 13:32
  SPEAKER_00: And if you're still at the point where you're trying to figure out whether DBS should even be part of the conversation, watch my video on when to consider surgery next.
• 13:40
  SPEAKER_00: That's where I walk through the signs that tell us it may be time to be evaluated.
• 13:44
  SPEAKER_00: Until next time, bye.