Latest / Tremor & Parkinson's Surgery Explained with Dr. Wu / Michael J. Fox Had Parkinson’s Brain Surgery (But It Wasn’t DBS)

Transcript

Michael J. Fox Had Parkinson’s Brain Surgery (But It Wasn’t DBS) · Tremor & Parkinson's Surgery Explained with Dr. Wu

• 0:00
  SPEAKER_00: If deep brain stimulation or DBS works so well, how come someone like Michael J.
• 0:05
  SPEAKER_00: Fox doesn't have it?
• 0:06
  SPEAKER_00: It's reasonable to wonder why one of the most prominent people with Parkinson's has seemingly ignored this surgical option.
• 0:12
  SPEAKER_00: But what you may or may not know is that Michael J.
• 0:15
  SPEAKER_00: Fox did have brain surgery for his Parkinson's disease.
• 0:18
  SPEAKER_00: Michael J.
• 0:18
  SPEAKER_00: Fox had Parkinson's brain surgery more than 25 years ago and it wasn't DBS.
• 0:23
  SPEAKER_00: And if you watch him today, you can see a lot of involuntary movements, so it's reasonable to wonder, with everything we can do surgically for Parkinson's now, why does he still move like that?
• 0:32
  SPEAKER_00: I'm Chun Yun Woo, and I'm a neurosurgeon specializing in Parkinson's disease and other movement disorders.
• 0:38
  SPEAKER_00: And his treatment history shows just how much Parkinson's surgery has changed since then.
• 0:42
  SPEAKER_00: So how he looks today tells you almost nothing about why he has not decided to get DBS.
• 0:48
  SPEAKER_00: Because there are just so many variables, so many nuances in everybody's decisions.
• 0:52
  SPEAKER_00: And to be clear, I don't know Michael J.
• 0:55
  SPEAKER_00: Fox personally.
• 0:56
  SPEAKER_00: So all I can do is base this discussion on things he said publicly and what we know about Parkinson's treatment more generally.
• 1:03
  SPEAKER_00: So what surgery did Michael J.
• 1:05
  SPEAKER_00: Fox actually have?
• 1:06
  SPEAKER_00: To understand this, you have to go back to 1998.
• 1:09
  SPEAKER_00: 28 years ago, Michael J.
• 1:11
  SPEAKER_00: Fox underwent a procedure called a thalamotomy.
• 1:14
  SPEAKER_00: I've talked about these procedures in more detail in some of my other videos, but basically, a thalamotomy is a lesioning procedure where we intentionally but very precisely damage a tiny part of the brain.
• 1:25
  SPEAKER_00: Now, instead of putting an electrode into the brain as we do with DBS, the surgeon creates a small permanent lesion in the specific part of the thalamus.
• 1:33
  SPEAKER_00: Now back then, this would typically have been done using a radio frequency or RF probe.
• 1:38
  SPEAKER_00: The surgeon would place the probe into the thalamus while the patient was still awake, perform testing to make sure it was in the right place, and then use RF energy to create a small lesion.
• 1:48
  SPEAKER_00: Now the goal at that time was pretty specific to control tremor.
• 1:52
  SPEAKER_00: And according to public reports, the surgery did exactly that.
• 1:55
  SPEAKER_00: It relieved his worst tremor.
• 1:57
  SPEAKER_00: But that kind of phalamonomy does not have the broader effects on Parkinson's symptoms that we can get from the DBS targets we commonly use today.
• 2:05
  SPEAKER_00: So you also have to remember what Parkinson's surgery looked like in 1998.
• 2:09
  SPEAKER_00: DBS had only been FDA approved for tremor the year before in 1997.
• 2:14
  SPEAKER_00: The broader use of STN and GPI DBS for Parkinson's, the type of DBS we routinely talk about today, was still developing.
• 2:22
  SPEAKER_00: So this was really a transition period in the field.
• 2:25
  SPEAKER_00: Surgeons had already spent decades treating movement disorders by making small, carefully placed lesions in the brain.
• 2:31
  SPEAKER_00: And at that time, it's important to remember that some of the earliest stereotypic procedures like this, making a lesion, dated back to the 1940s.
• 2:39
  SPEAKER_00: Then Levodopa came along and dramatically changed Parkinson's treatment.
• 2:43
  SPEAKER_00: Surgery became much less common.
• 2:45
  SPEAKER_00: But over time we learned that medication also has limitations.
• 2:49
  SPEAKER_00: While those medications may continue to work very well, they become harder and harder to manage throughout the day.
• 2:55
  SPEAKER_00: And over time, patients can develop off periods, fluctuations, dykinesias, and surgery eventually came back, but in a very different form.
• 3:04
  SPEAKER_00: Because with a lesion, we permanently alter a small part of the brain circuit.
• 3:09
  SPEAKER_00: And with DBS, we put an electrode into that circuit and use electrical stimulation to change how that circuit functions.
• 3:15
  SPEAKER_00: And the big advantage is flexibility.
• 3:17
  SPEAKER_00: If someone develops a stimulation side effect, we can change the stimulation.
• 3:21
  SPEAKER_00: We can change which part of the electrode we use, we can change how much stimulation we give, and if really necessary, if there are no other options, we can always turn the device off.
• 3:30
  SPEAKER_00: So from a treatment standpoint, with some caveats, I think of DBS as effectively reversible.
• 3:36
  SPEAKER_00: Now, obviously, putting the electrode into the brain still requires surgery, but the treatment itself, the stimulation, can be adjusted over time.
• 3:43
  SPEAKER_00: And this became especially important when treating both sides of the brain.
• 3:47
  SPEAKER_00: Historically, bilateral or treating both sides, bilateral lesioning carried significantly higher risk, particularly problems with speech, swallowing, gait, that is the ability to walk, and balance.
• 3:58
  SPEAKER_00: Meanwhile, DBS gave us a much more practical way to treat both sides because we could adjust the stimulation rather than permanently lesion both sides of the brain.
• 4:07
  SPEAKER_00: Now, what's really interesting is that focused ultrasound has now brought lesioning back with a modern spin.
• 4:13
  SPEAKER_00: Instead of passing a probe into the brain, we can use focused ultrasound energy to create a very precise lesion without a traditional incision.
• 4:21
  SPEAKER_00: And for selective patients, that can be a really excellent option.
• 4:25
  SPEAKER_00: But the fundamental difference is still the same.
• 4:27
  SPEAKER_00: A lesion is permanent.
• 4:29
  SPEAKER_00: DBS is adjustable.
• 4:30
  SPEAKER_00: So with that in mind, now we come back to Michael J.
• 4:33
  SPEAKER_00: Fox.
• 4:34
  SPEAKER_00: A lot of the movement people notice he has today is what we will call dyskinesia.
• 4:38
  SPEAKER_00: And dyskinesia is not the same thing as tremor.
• 4:41
  SPEAKER_00: Tremor is generally a more rhythmic, shaking movement, while dyskinesia can look like rocking, twisting, writhing, or almost constant involuntary movement.
• 4:50
  SPEAKER_00: And there's an important distinction here.
• 4:52
  SPEAKER_00: The dynesia we are talking about in Parkinson's is related to dopaminergic medications.
• 4:57
  SPEAKER_00: It is generally not something untreated Parkinson's itself produces.
• 5:01
  SPEAKER_00: But it is also not simply a matter of how long someone has been taking Levadopa.
• 5:06
  SPEAKER_00: Instead, how long you've had Parkinson's is one of the biggest factors in whether you develop dyskinesia.
• 5:11
  SPEAKER_00: As Parkinson's progresses, the brain's ability to handle dopamine smoothly changes.
• 5:16
  SPEAKER_00: And that is why two people taking similar amounts of medication can have very different experiences.
• 5:21
  SPEAKER_00: And it's also why delaying levadopa does not simply prevent dynesia or buy you a fixed number of dyskinesia free years.
• 5:28
  SPEAKER_00: Now, developing dyskinesia may affect people differently as well.
• 5:31
  SPEAKER_00: Dyskines can look far more alarming to an observer than it actually feels to the patient living with it.
• 5:37
  SPEAKER_00: I see this all the time.
• 5:39
  SPEAKER_00: A friend or family member may be very bothered by how much somebody is moving.
• 5:43
  SPEAKER_00: Meanwhile, the patient may tell me, this really doesn't bother me very much.
• 5:47
  SPEAKER_00: And sometimes the reverse is true.
• 5:49
  SPEAKER_00: The dyskinesia may be exhausting, painful, embarrassing, or it may interfere with what the person wants to do.
• 5:56
  SPEAKER_00: That's why I don't treat what looks abnormal from across the room.
• 5:59
  SPEAKER_00: I want to know what actually bothers the patient.
• 6:02
  SPEAKER_00: Is the dyskinesia painful?
• 6:03
  SPEAKER_00: Does it interfere with eating, walking, speaking, sleeping, or are the off periods actually worse?
• 6:10
  SPEAKER_00: Are they freezing?
• 6:11
  SPEAKER_00: Are they falling?
• 6:12
  SPEAKER_00: Are they spending hours every day waiting for their medication to start working again?
• 6:16
  SPEAKER_00: Those answers can take us in very different directions.
• 6:19
  SPEAKER_00: Of course, family observations matter too.
• 6:21
  SPEAKER_00: Sometimes family members recognize falls, impulsivity, cognitive changes, or safety problems that the patient may not fully appreciate.
• 6:29
  SPEAKER_00: But visible movement alone does not tell me what treatment somebody needs.
• 6:33
  SPEAKER_00: So that brings us back to the original question.
• 6:35
  SPEAKER_00: Why didn't Michael J.
• 6:36
  SPEAKER_00: Fox get DBS?
• 6:38
  SPEAKER_00: Interestingly, we actually do know at least part of his thinking at one point in time.
• 6:42
  SPEAKER_00: We don't know all the details and we don't know every option he considered.
• 6:45
  SPEAKER_00: And we certainly cannot know how he would make that decision today.
• 6:49
  SPEAKER_00: But in 2010, he had an interview with Sanjay Gupta and he was asked essentially this exact question: why not have another operation?
• 6:56
  SPEAKER_00: Why not use stimulation that could be adjusted to control more of his symptoms?
• 7:01
  SPEAKER_00: And Fox gave a pretty clear answer.
• 7:03
  SPEAKER_00: He said it was a personal decision.
• 7:05
  SPEAKER_00: He had already had brain surgery once, and his basic point was that the next time somebody went into his brain, he wanted it to be something curative or restorative, something that could actually affect the progression of Parkinson's in a more fundamental way.
• 7:20
  SPEAKER_00: In other words, he wasn't saying DBS doesn't work.
• 7:23
  SPEAKER_00: In fact, in that same conversation, he talked about tremendous improvements DBS had produced in other people's lives.
• 7:29
  SPEAKER_00: His point was that he personally did not want another brain operation simply for symptom control.
• 7:35
  SPEAKER_00: Because if he was going to undergo another brain surgery, he wanted that operation to aim at something closer to a cure.
• 7:42
  SPEAKER_00: And I think that is incredibly important context because that is a personal decision about what someone wants from an operation.
• 7:49
  SPEAKER_00: It is not a statement about whether the treatment works or not.
• 7:52
  SPEAKER_00: Think about something much simpler like glasses versus contact lenses.
• 7:57
  SPEAKER_00: Both can correct vision extremely well, but some people find glasses annoying and would much rather wear contacts.
• 8:03
  SPEAKER_00: Other people find contacts irritating and would much rather wear glasses.
• 8:07
  SPEAKER_00: Neither is universally better.
• 8:09
  SPEAKER_00: It depends on the person and their preferences.
• 8:12
  SPEAKER_00: If I see someone walking around wearing glasses, I would never conclude that contact lenses don't work well.
• 8:17
  SPEAKER_00: Maybe they tried contacts and hated them.
• 8:19
  SPEAKER_00: Maybe contacts bother their eyes.
• 8:21
  SPEAKER_00: Maybe glasses bother someone else more.
• 8:23
  SPEAKER_00: Maybe they simply prefer one option over the other.
• 8:26
  SPEAKER_00: Now, obviously, DBS is a much bigger decision than choosing glasses versus contacts, but the principle is the same.
• 8:33
  SPEAKER_00: That's what I'm getting at.
• 8:34
  SPEAKER_00: A treatment can work extremely well and still not be the treatment one particular person chooses.
• 8:39
  SPEAKER_00: And Michael J.
• 8:40
  SPEAKER_00: Fox's position is actually even more nuanced than that.
• 8:44
  SPEAKER_00: His own foundation, the Michael J.
• 8:46
  SPEAKER_00: Fox Foundation, has invested millions of dollars specifically into DBS research.
• 8:51
  SPEAKER_00: It has funded work aimed at improving DBS outcomes.
• 8:54
  SPEAKER_00: It has helped support early development of adaptive DBS, where stimulation can change based on signals being recorded from the brain.
• 9:02
  SPEAKER_00: And it has developed educational resources specifically to help with people with Parkinson's disease understand DBS.
• 9:09
  SPEAKER_00: Michael J.
• 9:10
  SPEAKER_00: Fox himself has also spoken positively about advances in DBS.
• 9:14
  SPEAKER_00: So the idea that Michael J.
• 9:16
  SPEAKER_00: Fox didn't have DBS, therefore DBS must not be very good, really doesn't hold up.
• 9:21
  SPEAKER_00: His personal threshold for another brain operation was one thing.
• 9:25
  SPEAKER_00: Whether DBS works for appropriate patients is a completely different question.
• 9:30
  SPEAKER_00: If you're dealing with Parkinson's and wondering whether DBS might fit your symptoms, I'd recommend you reach out to a neurosurgeon specializing in these types of procedures.
• 9:39
  SPEAKER_00: If you happen to be in my neck of the woods, you can find a link to my practice in the description below.
• 9:43
  SPEAKER_00: My team can help you understand whether an evaluation makes sense for you.
• 9:47
  SPEAKER_00: So when does something like dyskinesia make me start thinking about DBS?
• 9:51
  SPEAKER_00: You may have heard of the 5-2-1 rule.
• 9:54
  SPEAKER_00: Five or more doses of Levadopa in a day, two or more hours of off time, or one or more hours of troublesome dyskinesias.
• 10:03
  SPEAKER_00: Now, while this rule is not an absolute guideline, I still think it is a useful screening tool.
• 10:09
  SPEAKER_00: It gives us a simple way to recognize when medication may no longer be providing a consistently good day.
• 10:14
  SPEAKER_00: But it's important to know that our thinking about DBS has become much more individualized.
• 10:20
  SPEAKER_00: So current recommendations are actually moving away from the idea that someone has to reach some arbitrary stage of advanced Parkinson's or meet a rigid set of numbers like that 521 rule before we can even start talking about surgery.
• 10:34
  SPEAKER_00: If your medication works but the benefit is getting shorter or less predictable, that matters.
• 10:39
  SPEAKER_00: If dysknesia is becoming difficult to live with, that matters.
• 10:42
  SPEAKER_00: If tremor is breaking through despite medication, that matters.
• 10:47
  SPEAKER_00: And if medication clearly helps, but side effects prevent you from taking enough of it, that matters too.
• 10:53
  SPEAKER_00: DBS generally works best for the motor symptoms that already improve when your Parkinson's medication is working.
• 10:58
  SPEAKER_00: Tremor is a major exception because tremor can sometimes respond very well to DBS even when the medication never controlled it.
• 11:05
  SPEAKER_00: Now, unfortunately, DBS is not a cure and it generally will not fix symptoms that Levi Dopa never helped in the first place.
• 11:12
  SPEAKER_00: Things like balance problems, some gait problems, speech and swallowing problems, cognitive problems or the way that you think.
• 11:20
  SPEAKER_00: Those may continue to progress even when DBS is doing exactly what we intended it to do.
• 11:25
  SPEAKER_00: That's why deciding whether someone is a DBS candidate involves much more than looking at a tremor or dysknesia or some other outward symptom.
• 11:34
  SPEAKER_00: We may look at cognition, mood, falls and balance, medication response.
• 11:38
  SPEAKER_00: Which symptoms actually interfere with that person's life.
• 11:42
  SPEAKER_00: And most importantly, we need to ask what that patient wants surgery to actually accomplish.
• 11:47
  SPEAKER_00: There's another misconception that comes up when people look at Michael J.
• 11:51
  SPEAKER_00: Fox.
• 11:52
  SPEAKER_00: They see all that dyskinesia and think, maybe I should avoid Levadopa as long as possible so that it never happens to me.
• 11:58
  SPEAKER_00: But one thing I want to make clear is why avoiding or delaying Levadopa out of fear of future dyskinesia may be the wrong approach.
• 12:06
  SPEAKER_00: In general, that is not how we approach treatment.
• 12:09
  SPEAKER_00: The goal is to use the lowest effective dose that gives somebody good function.
• 12:13
  SPEAKER_00: We do not want to leave somebody unnecessarily stiff, slow, or undertreated today because we are afraid of a complication that may or may not become troublesome years from now.
• 12:24
  SPEAKER_00: Levadopa has not been shown to poison the brain or speed up Parkinson's disease, and delaying Levadopa does not simply buy you extra dykinesia-free years.
• 12:33
  SPEAKER_00: Again, disease duration and progression play a major role in whether dskinesia develops.
• 12:39
  SPEAKER_00: If dskinesia eventually becomes troublesome, that does not mean taking Levadopa was a mistake either.
• 12:44
  SPEAKER_00: It means Parkinson's has changed, it evolves, and the way the brain responds to the medication has changed.
• 12:51
  SPEAKER_00: At that point, we may change the medication strategy, we may discuss other advanced treatments, and for the right patient, that may be exactly when DBS becomes worth considering.
• 13:00
  SPEAKER_00: And that brings up one final misconception.
• 13:03
  SPEAKER_00: DBS should not automatically be thought of as the last resort.
• 13:07
  SPEAKER_00: We do not need to wait until somebody has exhausted every imaginable treatment and is barely functioning before we even start talking about surgery.
• 13:15
  SPEAKER_00: In fact, waiting too long can sometimes mean missing the period when somebody is actually a better candidate.
• 13:21
  SPEAKER_00: That does not mean everybody with Parkinson should get DBS.
• 13:25
  SPEAKER_00: Far from it.
• 13:26
  SPEAKER_00: Some people do extremely well with medication alone.
• 13:29
  SPEAKER_00: Some people have symptoms DBS is unlikely to improve, and some have cognitive, psychiatric, medical, or other factors that make surgery a poor choice.
• 13:38
  SPEAKER_00: And some people simply do not want an implanted device.
• 13:42
  SPEAKER_00: That is a completely reasonable choice.
• 13:44
  SPEAKER_00: The point is simply that the conversation should happen when the symptoms DBS is good at treating are becoming difficult to manage.
• 13:51
  SPEAKER_00: Not years later because surgery sounds like something you are supposed to leave until the very end.
• 13:56
  SPEAKER_00: And that is really what Michael J.
• 13:57
  SPEAKER_00: Fox's story illustrates.
• 13:59
  SPEAKER_00: He underwent surgery in a very different era.
• 14:01
  SPEAKER_00: He had a thalamotomy aimed primarily at tremor, and that surgery worked for the symptom it was intended to treat.
• 14:08
  SPEAKER_00: Years later, now, when asked about another operation, he explained publicly that he personally wanted the next brain intervention to offer something more fundamental than symptom control, something closer to a cure.
• 14:20
  SPEAKER_00: That was his decision, his goals, his threshold for another surgery.
• 14:24
  SPEAKER_00: That is why Michael J.
• 14:25
  SPEAKER_00: Fox's personal decisions about DBS should not be used as evidence for or against DBS.
• 14:32
  SPEAKER_00: The question for a patient today is not why didn't Michael J.
• 14:35
  SPEAKER_00: Fox get DBS?
• 14:36
  SPEAKER_00: The better question is whether DBS fits your symptoms, your medication response, your goals, and your disease profile now.
• 14:43
  SPEAKER_00: If your medication still works, but the good periods are getting shorter, or your tremor is breaking through, or dyesia is becoming harder to live with, or medication side effects are limiting what you can take, that is when it may be worth getting evaluated.
• 14:57
  SPEAKER_00: And if you want to know the specific signs I look for when deciding whether someone is getting close to that point, watch my video on whether to consider Parkinson's surgery next.
• 15:06
  SPEAKER_00: Until next time, bye bye.