Latest / Tremor & Parkinson's Surgery Explained with Dr. Wu / Parkinson’s Neurosurgeon: This ONE Sign Means It’s Time to Discuss Brain Surgery

Transcript

Parkinson’s Neurosurgeon: This ONE Sign Means It’s Time to Discuss Brain Surgery · Tremor & Parkinson's Surgery Explained with Dr. Wu

• 0:00
  SPEAKER_00: Most people think that surgery for Parkinson's disease is something that you do at the very end when every other option has been considered and there's nothing else left to do.
• 0:10
  SPEAKER_00: But that isn't true.
• 0:12
  SPEAKER_00: That really shouldn't be the case.
• 0:14
  SPEAKER_00: I'm a neurosurgeon specializing in helping people with Parkinson's disease.
• 0:18
  SPEAKER_00: And I want to show you exactly how we decide when it's time to start talking about surgery because it isn't necessarily based on your age or how long you've had Parkinson's disease or how bad your symptoms may look on your worst day.
• 0:34
  SPEAKER_00: Ultimately, the timing of when to really consider surgery for your Parkinson's ends up being a conversation about patterns, really how reliably your medication controls your symptoms, how much of your day is spent waiting for the next dose to have an effect, and whether you are in control of your Parkinson's or is your Parkinson's in control of you, whether it's starting to organize your life for you.
• 0:58
  SPEAKER_00: And it all starts with an understanding of what medications are doing to help your symptoms with Parkinson's.
• 1:04
  SPEAKER_00: Because a lot of folks think that the medication simply stops working, but that's not actually what happens.
• 1:10
  SPEAKER_00: So for most people who end up considering surgery, the medication still works.
• 1:15
  SPEAKER_00: It just doesn't work as well or as smoothly or for as long.
• 1:19
  SPEAKER_00: And here's what's going on.
• 1:20
  SPEAKER_00: When you take a pill, your Carbodopa Levadopa or whatever medication you've been prescribed by your neurologist, the medication does not go straight to your brain.
• 1:30
  SPEAKER_00: First, you have to digest it, it goes into your stomach and then it is absorbed into your bloodstream.
• 1:35
  SPEAKER_00: And your body starts breaking some of that down along the way.
• 1:39
  SPEAKER_00: And ultimately, that's why Levadopa is paired with another medication called Cardopa.
• 1:45
  SPEAKER_00: Because the carbidopa helps protect the levadopa and allows it to get into the brain because it has to get across a protective layer called the blood brain barrier.
• 1:56
  SPEAKER_00: And this protects the brain from toxins and keeps it safe and healthy.
• 2:00
  SPEAKER_00: And unfortunately, the blood brain barrier will also prevent the levadopa from getting to the brain.
• 2:06
  SPEAKER_00: And so the carbidopa again helps protect the levadopa and carry it across that blood brain barrier into the brain.
• 2:13
  SPEAKER_00: And when the levadopa does cross the blood brain barrier again with the help of the carbidopa, then it can be converted to dopamine and the brain can use it to restore its needed levels of dopamine to minimize the symptoms of Parkinson's disease.
• 2:27
  SPEAKER_00: So why does the same medication that you've been taking for so long work well for years and then stop feeling as reliable?
• 2:35
  SPEAKER_00: Why are you having motor fluctuations where the medication works and you are considered in a medication on state and then stops working and you fluctuate down to this medication off state?
• 2:46
  SPEAKER_00: So when you are first diagnosed, your own brain still makes a good amount of dopamine.
• 2:51
  SPEAKER_00: And ultimately, the medication is just filling in the gaps.
• 2:55
  SPEAKER_00: So your brain can still store dopamine and release it gradually.
• 2:59
  SPEAKER_00: So I've made this analogy of medication for Parkinson's being like water in a bathtub.
• 3:06
  SPEAKER_00: So early on, there's a certain amount of water that is already in that bathtub, and that's a dopamine that your brain already makes.
• 3:13
  SPEAKER_00: And so that helps smooth out each dose.
• 3:16
  SPEAKER_00: So you may not feel a sharp beginning or end when you take medication because that medication is just turning on the faucet to that tub a little bit at a time.
• 3:25
  SPEAKER_00: But unfortunately, every year, as Parkinson's progresses, more of the cells that create dopamine on their own actually die off.
• 3:34
  SPEAKER_00: So the level of that tub becomes lower and lower with time.
• 3:38
  SPEAKER_00: And so because your brain is making less dopamine, you have to turn that faucet on for longer, take higher doses of medication.
• 3:46
  SPEAKER_00: So the amount of water becomes less.
• 3:48
  SPEAKER_00: And the same pill that you have to take for your Parkinson's disease has to do more and more of the work.
• 3:55
  SPEAKER_00: Again, turning that faucet on for longer is like increasing the dose of that medication.
• 4:00
  SPEAKER_00: So eventually, although the medication is still working, it's not lasting as long anymore.
• 4:06
  SPEAKER_00: And as the disease progresses, people start scheduling their lives around medication.
• 4:11
  SPEAKER_00: You take the pill, look at your watch to figure out when it's going to kick in, you wait, and then you start feeling more like yourself.
• 4:19
  SPEAKER_00: And when you're in that window, you start doing things.
• 4:22
  SPEAKER_00: And that good control state of your symptoms is called a medication on state.
• 4:29
  SPEAKER_00: Unfortunately, when the dopamine starts to wear off, the symptoms start to come back.
• 4:35
  SPEAKER_00: So the symptoms return.
• 4:37
  SPEAKER_00: And for some people, that wearing off happens gradually, but for others, it can feel like a sudden drop.
• 4:43
  SPEAKER_00: And we call that state where you are off of your medications and it's not working as well, rightfully the medication off state.
• 4:51
  SPEAKER_00: And so the ups and downs again can be very different for different people.
• 4:56
  SPEAKER_00: If it's gradual, it tends not to be as big of an impact.
• 4:59
  SPEAKER_00: But certainly if it's a rapid fall off, it can be a significant impact to your day-to-day life.
• 5:05
  SPEAKER_00: Because these symptoms may rapidly come back right in the middle of dinner, halfway through writing something on a piece of paper, or while walking through a store, your body may become stiffer, slower, your tremor may emerge, you may become stuck or frozen.
• 5:21
  SPEAKER_00: And again, this is called your medication off state.
• 5:24
  SPEAKER_00: So what do people usually do in this scenario?
• 5:28
  SPEAKER_00: Well, in this scenario, most people will adjust their medications, take them more frequently.
• 5:34
  SPEAKER_00: The problem with taking the medications more frequently is that that may cause the tub to overflow.
• 5:39
  SPEAKER_00: And when that happens, you may get symptoms of dyskinesia.
• 5:43
  SPEAKER_00: So at this point, people usually don't think about surgery right off the bat, but instead they do what all of us would do squeeze another dose into the day, go from taking medications every four hours to every three hours, and sometimes even more often.
• 5:58
  SPEAKER_00: I've even had patients set an alarm in the middle of the night to make sure that they can get their medications so they don't feel as bad the next morning.
• 6:06
  SPEAKER_00: So you can see how the frequency of needing your medications can be one sign for starting to consider surgery because that can be a significant impact on your day-to-day life and your quality of life.
• 6:19
  SPEAKER_00: But the timing of medication does not automatically mean you need surgery, but it is often a sign that we should stop asking only how we can adjust the medication again and start asking, should surgery be part of the conversation at least, or something that we should consider.
• 6:34
  SPEAKER_00: Because as I alluded to before, there is another problem that can appear over time, and that is the dyskinesias.
• 6:40
  SPEAKER_00: And dyskinesias refers to the extra uncontrolled movements, often twisting, swaying, what appears like fidgeting type movements that happen when the levels of dopamine or medication are too high.
• 6:53
  SPEAKER_00: These are often medication-induced dyskinesias that we often see in our people suffering from Parkinson's disease.
• 7:00
  SPEAKER_00: So some patients spend a day trapped between these two problems, where they have too little dopamine, they are in a medication off state, and ultimately are suffering from stiffness, slowness, tremor, the symptoms of Parkinson's.
• 7:15
  SPEAKER_00: Or they can swing too far to the other end of the spectrum and have too much medication effect and develop dyskinesia.
• 7:21
  SPEAKER_00: Again, the goal with medication is to get you into that sweet spot and get the right amount.
• 7:27
  SPEAKER_00: But unfortunately, with some patients, that right amount becomes narrower and narrower of a target over time.
• 7:33
  SPEAKER_00: And this is ultimately a little bit of a roller coaster for patients going up and down, fluctuating between on and off dyskinesia throughout the day.
• 7:43
  SPEAKER_00: Now, before I get into what that conversation about surgery is like, if you're finding this information helpful, like and subscribe.
• 7:50
  SPEAKER_00: I put out new videos every week.
• 7:51
  SPEAKER_00: Okay, now let's get back to it.
• 7:53
  SPEAKER_00: There's a treatment called deep brain stimulation that approaches this medication roller coaster in a different way entirely.
• 8:00
  SPEAKER_00: So what is deep brain stimulation or DBS for short?
• 8:04
  SPEAKER_00: Well, first of all, we haven't done ourselves any favors in medical field by calling it deep brain stimulation because it just sounds scary to most patients, but it is what it is.
• 8:12
  SPEAKER_00: We're not changing the name and we're kind of stuck with it.
• 8:15
  SPEAKER_00: So getting back to it, what does DBS do?
• 8:17
  SPEAKER_00: Instead of spending your day waiting for the next pill to kick in and worrying about when this one is going to wear off, DBS provides steady stimulation 24-7 throughout the day to help smooth out those ups and downs.
• 8:31
  SPEAKER_00: The real strength of DBS is addressing the motor fluctuations that you may encounter when the medications are not as effective as they used to be.
• 8:39
  SPEAKER_00: I want to be clear that DBS does not cure Parkinson's disease.
• 8:42
  SPEAKER_00: I wish it did.
• 8:43
  SPEAKER_00: It does not.
• 8:44
  SPEAKER_00: It does not stop the disease, but it can make your days feel much more predictable again.
• 8:49
  SPEAKER_00: The way it does that is with a small electrode placed in a very specific part of the brain.
• 8:55
  SPEAKER_00: And that electrode is connected to a battery underneath the skin that usually sits underneath your collarbone.
• 9:00
  SPEAKER_00: Now, unlike medication, the stimulation does not have to be swallowed or absorbed through the stomach or cross the blood-brain barrier as I was talking about before.
• 9:08
  SPEAKER_00: Instead, the electrode is already in place, providing continuous stimulation.
• 9:13
  SPEAKER_00: And so it doesn't mean that every symptom disappears and it does not mean that Parkinson's stops progressing.
• 9:20
  SPEAKER_00: It just means that the treatment itself is not cycling on and off with every pill as the medication makes its way through your bloodstream, across the blood-brain barrier, into your brain.
• 9:30
  SPEAKER_00: Now, as effective and as established as DBS is as a surgical therapy, it's still surprising to me how few people ever even hear about it.
• 9:40
  SPEAKER_00: There are studies that suggest that only about 10% of eligible patients, people that could benefit from DBS, even hear about and discuss DBS.
• 9:50
  SPEAKER_00: That's not 10% who have surgery, it's only 10% who actually start the conversation.
• 9:56
  SPEAKER_00: So that's why I'm making this video to try to have that conversation with more people that may benefit from DBS.
• 10:04
  SPEAKER_00: Because ultimately this is an important distinction.
• 10:07
  SPEAKER_00: A referral to a neurosurgeon does not necessarily mean surgery.
• 10:10
  SPEAKER_00: It means meeting the team, learning what DBS can do, what DBS cannot do, and deciding whether a full evaluation even makes sense.
• 10:19
  SPEAKER_00: The good news is we're not guessing who is likely to benefit.
• 10:23
  SPEAKER_00: DBS is a well-established therapy and we have a number of ways of determining if you are a good candidate or not.
• 10:29
  SPEAKER_00: The first way we have is seeing how well you respond to your medications.
• 10:34
  SPEAKER_00: In general, we want to see that you have a reasonable response to those medications.
• 10:39
  SPEAKER_00: And if there's any uncertainty, we run a medication test.
• 10:42
  SPEAKER_00: And what that means is you would come in after your medication has worn off and we evaluate your movement.
• 10:47
  SPEAKER_00: Then you would take your normal dose of medication and wait for it to kick in and have its full effect, which may be 30 or 60 minutes later.
• 10:55
  SPEAKER_00: Then we evaluate you again.
• 10:57
  SPEAKER_00: Traditionally, an improvement of about 30% on our formal UPDRS score, which is the unified Parkinson's disease rating scale, if you see about a 30% improvement there, that has been typically a good indicator of a good response to DBS.
• 11:14
  SPEAKER_00: So again, if you respond well to the medication, it is likely that you will respond well to deep brain stimulation.
• 11:21
  SPEAKER_00: Now, that number is a guide and it's not an absolute rule.
• 11:24
  SPEAKER_00: On top of that, while the symptoms of stiffness and slowness, if they respond to medications being a good predictor of responding to DBS, while that may be the case, tremor is a classic exception and in a good way.
• 11:38
  SPEAKER_00: Some severe tremors can respond well to DBS even if they have not responded well to medication.
• 11:44
  SPEAKER_00: And just so that we're all on the same page and you know what we're talking about, often this medication test is called a Levadopa challenge.
• 11:50
  SPEAKER_00: So if your doctor asks about your response to medication and you might not be as certain about what symptoms improve and which ones do not, they might order a Levadopa challenge in which they work through this process to get a clear sense of what symptoms respond and to what degree.
• 12:08
  SPEAKER_00: Now, in addition to the medication response, we look at your overall constellation of symptoms.
• 12:16
  SPEAKER_00: We look at your balance, your thinking and memory, your mood, your overall health.
• 12:20
  SPEAKER_00: And then we have to discuss with you which symptoms are actually interfering with your life, which are priorities, because we have to have a clear understanding on both sides of what we are looking to improve and what we can improve.
• 12:33
  SPEAKER_00: It's important to think about DBS in this way, and that DBS is not simply replacing your medication.
• 12:39
  SPEAKER_00: Most patients still take medications after DBS surgery.
• 12:43
  SPEAKER_00: They work together.
• 12:43
  SPEAKER_00: They're synergistic.
• 12:45
  SPEAKER_00: DBS is helping make the day more predictable, reducing those motor fluctuations.
• 12:50
  SPEAKER_00: So instead of spending the day bouncing between on and off, many patients have fewer ups and downs and they have more predictability to their day-to-day life.
• 12:59
  SPEAKER_00: They have fewer medication adjustments, fewer dyskinesias, and more hours where they simply feel like themselves.
• 13:06
  SPEAKER_00: I still remember one of my early patients that I treated with deep brain stimulation.
• 13:10
  SPEAKER_00: He spent much of his life working on boats as a hobby.
• 13:13
  SPEAKER_00: And that was one of the things that he loved the most.
• 13:15
  SPEAKER_00: And unfortunately, as his Parkinson's got worse, that brought on stiffness and slowness to the degree where he couldn't do what he loved.
• 13:24
  SPEAKER_00: He couldn't work on boats.
• 13:25
  SPEAKER_00: He had to walk away from it completely.
• 13:26
  SPEAKER_00: We talked about what his symptoms were, what responded to medications, what we could expect from DBS.
• 13:32
  SPEAKER_00: I was extremely happy to see that after surgery, his movement came back enough to the point where he could get back to what he loved.
• 13:39
  SPEAKER_00: He could get back to working on boats, uh, tuning them up, and getting back onto water.
• 13:44
  SPEAKER_00: So even in this anecdote, the disease was not cured.
• 13:47
  SPEAKER_00: Unfortunately, again, it never is with DBS, but it gave him back significant quality of life so that he could go back to doing the things that he had given up on previously.
• 13:58
  SPEAKER_00: And that really is the goal.
• 14:00
  SPEAKER_00: Not perfection, not erasing Parkinson's, but more good hours, more quality of life, getting back to what you love doing.
• 14:08
  SPEAKER_00: So why do people delay this conversation of surgery if it's so effective?
• 14:12
  SPEAKER_00: Sometimes the medication just keeps getting adjusted, so surgery never feels urgent.
• 14:18
  SPEAKER_00: If another pill or another dose buys you a little more time, it feels reasonable to just keep going down that path until one day your whole life revolves around medication.
• 14:27
  SPEAKER_00: Sometimes people think that brain surgery is something to save for the very end, the ultimate last ditch effort to get back some quality of life.
• 14:36
  SPEAKER_00: But the problem with saving it for later is that there may be years while you are watching and waiting and you could have had that quality of life earlier.
• 14:45
  SPEAKER_00: So DBS at the right time can help you live life more fully.
• 14:49
  SPEAKER_00: But if you wait too long, it cannot give you those years back.
• 14:53
  SPEAKER_00: And you know, on the flip side, I'm not saying to rush into surgery.
• 14:57
  SPEAKER_00: There is a reason that we generally wait at least four years after diagnosis before recommending DBS.
• 15:03
  SPEAKER_00: Some conditions can look like Parkinson's early on, but are actually more aggressive and don't respond well to DBS.
• 15:10
  SPEAKER_00: And there are some studies that are now being performed that are looking into doing DBS earlier than that general four-year mark.
• 15:17
  SPEAKER_00: So four years is not a magic biological cutoff, but it's part of a conservative approach that gives us time to confirm the diagnosis and understand the pattern of symptoms that you have and make sure that you respond well to medications and perform the appropriate tests, as I mentioned before.
• 15:32
  SPEAKER_00: So you can see how we take a very careful approach, confirm the diagnosis, monitor medication response, evaluate the symptoms that DBS is likely to help, and distinguish them from the symptoms that DBS is unlikely to help.
• 15:45
  SPEAKER_00: And ultimately, recommend surgery only when it is appropriate and in your best interest.
• 15:50
  SPEAKER_00: Because there are also real risks and trade-offs to DBS just like any other surgery.
• 15:56
  SPEAKER_00: DBS is brain surgery and it can help symptoms, but not all symptoms.
• 16:00
  SPEAKER_00: And as much as I would like to be able to help everybody with Parkinson's disease, that's just not the way that things are.
• 16:06
  SPEAKER_00: And so it might not be the right choice for every patient.
• 16:09
  SPEAKER_00: Now, the next video is entirely about those risks, what can go wrong, which side effects are temporary or adjustable, and how we decide whether the potential benefit is worth the risk for a specific patient.
• 16:20
  SPEAKER_00: So here's a take-home message.
• 16:21
  SPEAKER_00: If you're taking Parkinson's medication every four hours or more frequently than that, if you're waking up in the middle of the night just so that you can take your medications and stay in a medication on state, or if medication off periods are limiting your day, or if dykinesias are becoming difficult to control, or if tremor remains disabling and a significant part of what interferes with your day-to-day life despite medications, that does not mean you need surgery, but it probably does mean that it's time to ask whether or not DBS is right for you.
• 16:53
  SPEAKER_00: And if you are earlier in your Parkinson's journey, be sure to watch my video on the three things I recommend if you are newly diagnosed.
• 16:59
  SPEAKER_00: It's appearing on your screen now.
• 17:01
  SPEAKER_00: Until next time, bye.