if this is as good as it gets. Did a great job. this is 300% improvement. Oh. That's great to hear. Yeah. There you go. That was Murray Bocian talking to his doctor minutes after a procedure that eased the uncontrollable shaking in his hands that had plagued him for 30 years To our My daily living was really bad. I mean, I shook, I dropped things. I couldn't do things myself. My wife had to help.
Murray has essential tremor, a nervous system disorder that causes shaky extremities, most often in the hands. And as Mary pointed out, it makes everyday tasks like tying shoes or holding a glass very difficult. Some even have to stop working From the kitchen to the family room, it was how much I could spell by way of I. Otherwise, I really Mary, people living with this type of tremor have done so for years, if not decades.
Most patients don't require treatment or can manage the condition with lifestyle changes and medication. But when those don't help, there are few other options, including the one that has Mary feeling like his old self again. Hello and welcome to 20 Minutes. How talk. I'm sandra Lindsay. today on the show we explore what everyone needs to know about essential tremor and the latest treatments. While surgery has been available since the 1950s, a new incision.
This procedure called high intensity focused ultrasound or high fu, is improving quality of life for people like Mary. Without the need for surgery. and the effects are immediate. Recently my colleague Rob Hoyle sat down with Murray's surgeon, Dr. Albert Finney, director of functional neurosurgery and the deep brain stimulation and Program at Northshore University Hospital. To learn more.
Thanks, Sandra. In the United States, there are approximately 10 million Americans living with essential tremor, which Dr. Noy said makes it the most common movement disorder. it's a degenerative disease, It's progressive. We usually call it benign essential tremor, because it's not a reality that will lead to your death. It's something that just happened once you have it, it's progressive over time. And because it's progressive, it's really about quality of life.
the biggest factor for patients with a sense tremor is their progressive loss of their quality of life. So, yeah, simple facts of eating, drinking, cutting their meat, putting on makeup, very big topic, you know, drinking water, coffee and people who are a handyman and a craftsman and they want to use a hand tools. Sure. That's a you know, it gets it interferes with their ability just to do fine things with their hands. So there's no other symptom that's really debilitating them.
And you know, it comes to an issue about how long can a patient handle having their tremor interfere with their life. Right. Because you said it's progressive, which means it's going to get worse over time. It's not going to get better. That's for stay the same. That's why we call it essential. Because we don't know exactly. There's nothing that we use in medicine.
We call things essential because there's no cause, there's no tumor, there's no abnormality structurally in the brain that is causing the tremor. While the cause is unknown, Dr. Finau says the biggest risk factor is genetics. But 80% of essential tremor is familial, meaning that there's a large hereditary component of it as opposed to being sporadic, whereas that's the kind of the opposite for Parkinson's disease. This is a common point of confusion.
Many people think of essential tremor as being related to Parkinson's, but there is an easy way to tell the difference. essential tremor is really a tremor that at intention, not at rest. So they may notice as they're trying to use their hands to do some type of manipulation, say, holding a cup or trying to eat or write with a pen or using a utensil, that's when it becomes manifest. Unlike Parkinson's disease, where tremor is simply at rest. that really classifies the type of disease.
There's also a test for Parkinson's disease that can help. one of the things that provider could do is automate that scan. That's a dopamine transporter, PET scan, positron emission tomography scan. Basically it's radio nucleotide. Looking at the mean dopamine transporter. Dopamine is important in Parkinson's disease, but not in essential tremor. So if there's an abnormal level of that transporter in the scan, then that would signify more Parkinson's disease than essential tremor.
But it's not 100% either. Typically, patients with essential tremor have turn, it gets worse when they're stressed or anxious. Typically when they if you ask them do you drink alcohol and make patients who drink alcohol socially may notice that okay, after a glass of wine or beer at night, their tremor actually gets better.
And that's because there's just respond to a depressing nervous system. do. We would obviously want to get an imaging of the brain at this the first time we're seeing this to make sure there is no structural abnormality that's there. if a patient has a stroke or a so you had some type of hemorrhage that could cause a different type of trauma that would be related to that. And if it's there isn't, as we would expect, then we would make that diagnosis.
Unfortunately, many people don't seek medical care for a central tremor due to a lack of awareness, embarrassment or stigma. Essential tremor is one of those really undiagnosed situations, because it usually afflicts patients when they're older So a patient may develop a tremor very subtly over time, and that becomes more manifest as they age, but they may think nothing of it. So it's, hey, it's this is old age, or maybe it's due to nerves or anxiety.
And so they're not going to seek medical attention. They're not going to have a proper diagnosis. Unfortunately, patients with tremor that is progressive, they seek less of social situations and try to be more reclusive so that they can not be seen with their tremor. That's a source of an embarrassment. That's one type of lifestyle change. Another one which is a little bit more progressive, would be weighted objects.
So say if they're using a fork, a weighted fork or spoon, or specifically patients complain of, you know, having a spoon with cereal or a spoon with their peas. Uh, very difficult to control. But the weight, it obvious that patients have a little bit better use of. There are also some bracelets that are actually supplied by a prescribed by a neurologist that have ability to dampen that tremor pretty decently in the initial stages.
Dr. Van Noy says it's important to see a doctor because, as he mentioned before, the condition worsens over time and can cause severe problems for some. And for patients who aren't sure where to start. who your family practitioner should be able to diagnose you with this, your general practitioner, but a neurologist obviously be better equipped to do so. Go see in or out. Just now, once you get see a neurologist, they would differentiate in tension tremor versus a resting tremor.
They would probably start you on some medication. Typical medications would be Hannelore, which is a beta blocker. It's actually a heart rate reducing medication used for people who have blood pressure. That's a typical one that's been very common to use. Another one is called Printed down. It's an anti-seizure medicine. One or both of those would be used initially.
They have a tendency they're not directly targeted at essential tremor, but because of the way they suppress activity in your nervous system, they have the ability to attenuate the amplitude, which means the degree of movement of your tremor you can suppress. It can be highly effective in a patient with a very small tremor. That is typically an initial thing that patients can get by for years. But he points out that medication is not for everybody.
these medications are they suppress activity, but they can make you drowsy. They can make you nauseous. Patients don't like it or it's not working. So once that occurs, we look for treatments that are targeted actually at the problem that we have already identifying, which is this pathway that's apparently working. Surgery offers that more targeted approach that Dr. Finley just mentioned.
While the medications used to treat essential tremor were initially designed for other conditions, procedures like deep brain stimulation and lesion therapy have been around for decades and are designed to stop or control the area of the brain, causing the tremors.
deep brain stimulation, a very common procedure that's FDA approved in the last 30 years, where we put an electrode into this location, and through high frequency stimulation, we can then train the cells to fire at a normalized firing pattern. This can immediately take away the tremor As your measure of disease progresses, you have the ability to continue to control your tremor.
like deep brain stimulation, lesion therapy targets brain tissue that is causing tremors while lesion on the brain is typically caused by injury or disease. Surgeons have been able to turn it into a treatment for conditions like essential tremor. In this approach, they create a lesion in the affected area of the brain to disrupt the electrical signals between the brain and the body that caused the tremors.
This previously had been a surgical situation where we make an incision, cut a hole and put a probe into this target and cause a lesion And the node that is is involved in this pathway is in the thalamus, The thalamus, located in the middle of the brain, relays nerve singles between the body and the brain. So to intercept that information flow, we will create a lesion or create stimulation to stop that, and that automatically changes the tremor. It causes tremor improvement.
the approach to lesion therapy has evolved. And the same effect can be achieved without surgery. There are two approaches. One uses radiation to slowly create the same lesion in the same spot of the brain, and the benefits develop over several months. This is called gamma knife therapy. Then there's high fu. I intensely focused ultrasound or high food has been FDA approved since 2016. this is a new way of creating a reason that making that roadblock of information transfer that improves tremor.
What's interesting about this is that a patient can be outpatient and on one day can have an hour and a half procedure and go home without tremor. High fu occurs completely in an MRI scanner and uses sound waves to target the tremor causing tissue in the brain without harming the surrounding tissue. No anesthesia necessary. The process starts with a quick head CT to determine if a patient is a good candidate for the innovative procedure.
essentially, we want to focus ultrasound beams through your skull without creating an incision. But we need to look at the actually the skull density ratio, the the difference between the inner and outer tables of your skull so that we can focus those ultrasound beams well enough to create that lesion. If that skull density is too low, then actually we can't focus those ultrasound beams well enough and we are not going to be able to create that lesion, which is kind of a disappointing.
But we need to know that ahead of time. Right? So more than 95% of patients are candidates. But this is one of our this is the only screening test that we have. Our team followed Murray on the day of his high fu procedure, the second modestly, many years ago, I would have a seat in our lovely little chair here. The chair Right Put your hands up for me. It's a little bit worse on the right and put your hands up like this. All right.
We just want to make sure obviously we're Peterson, So we're going to be treating the opposite side of your brain for the right side. So that's what we need to do, that you're going to sign this and then I'll sign it. And we should have a have to shave their head. While not an issue for Murray. It can be a barrier for some. As you might expect, this has been very much more common in females than males. And so, yes, so males have no problem with shaving their head.
Women, we have this is our this is a constant struggle that we do see. But some women are getting around it. And the immediate benefit of high fu is what's helping women get around it. Those who get the procedure say the process is a minor inconvenience on their way to feeling freedom finally from the uncontrollable shaking in their hands. So why is shaving your head necessary for this procedure? that's going to affect how we can focus as well for something. So we want to make it very uniform.
Once we see the patient's head right down to using a razor, we then put a stereotactic frame on a patient. And this is so that we can visualize your brain in three dimensional space with the MRI and pick a coordinate out to place that target. That frame is only on for the procedure. This frame looks like a vise and acts as a foundation for a visor like head covering. and brain area, pulling it down as low as it goes, Right over. So on top of top of the frame.
So like a Once that frame is on, you know, we then put a membrane over the scalp which we will circulate water around to cool the scalp. As we're performing this procedure, we will then walk you over to the patient, over to the MRI scanner, which will then lay them down, connect the frame, and they will get some short sequences to visualize the chart, which we kind of need to do just at that moment.
that process involves multiple tests during the actual procedure, which Dr. for Noy explained midway we want to play this lesion. We want to make sure that we're actually creating focusing those ultrasound beams directly into the area that we target. So we check it three different ways at least make sure of the three different orientations that we're actually getting it into this area correctly. If we have to make changes in how we're actually function, those beams we do.
And then once we have that, then we can actually perform a test sonication So we can kind of kind of treat the area but not create a permanent lesion just to treat, to see if we're actually providing efficacy without a side effect. And so we do that, we're going to test it, we can test it multiple times. And what if that's all good set? We don't have to make any further adjustments. Then we'll create the actual permanent feature you.
risks involved in complex brain surgery as well as radiation from the gamma knife approach mentioned earlier. This is FDA approved for only unilateral treatment, meaning that we can only create a an effect on one side of the brain to affect one side, one arm. Only nine months after the first side, we can do the second side. so we can see that we're trying. We are increase in temperature within the brain?
this is going to if we get this temperature to rise above 50 or so, that we will start seeing an improvement. And he says he has an improvement already, but we're not quite where we want it to go. So we need to get there the reason why we're doing this in the MRI scanner so we can see real time that we're actually affecting the area that we want to target.
In 2023, Dr. Van Noy and Team began using Hai Fu the first and only to do so on Long Island, and Murray was their second patient Murray is a great guy, had really bad essential tremor suffering for years both hands constant very difficult to eat drink right spilling on himself all the time wonderful support family so he had to with this back in maybe early May and you know, had a great outcome.
and that family support includes his wife, Beth, who first learned about Hai Fu and encouraged her husband to seek treatment prior to Hai Fu, Murray was unable to complete a simple test that required him to draw a spiral and a straight line. Following the high fu session, he was able to easily draw both. right, all right. Both between the lines stuff. One 200% success. Better than I did it before. Close look. More smooth, that's for sure. nine months to obtain the same benefit on his left side.
The difference on his right. He said, is night and day. he can, you know, hold hands with his wife, can eat without spilling on himself. And he says that his laundry bills have gone down. It's just like really, really a huge improvement in quality of life. I got it. And I already got it. Very well. It's good. It's pretty good. Nice. All right. Your head is not spinning. this year. Murray and his wife are looking forward to a lot more hand-holding and both consider Hai Fu a miracle.
I would say in terms of efficacy, I would say greater than 90% improvement of his tremor on one side. And that's typical for most patients. We would have an initial improvement of over 90% improvement of their tremor, and that is sustained for a years now. Um, there has not been an amazing amount of studies, but we do know that the efficacy is sustained over time. the amount of tremor improvement will go well, we're reduced over time. That's a function of many things.
Function of, you how great of a lesion the patient had and how that the progression of their disease. at three years post lesion in post treatment there is about at least a 75% efficacy efficacy rate. So still 75% better than as they were started, not as great as 90% still perfect. So after three years you could go back and get another procedure. Definitely could go back and get another procedure.
Patients undergoing Hai Fu may experience some balance issues, but Dr. Finau says it's only temporary. we're creating a lesion. There's some swelling that occurs around this lesion for a couple of days, two weeks, and that can affect a little bit of an imbalance. So actually we provide patients with a walk or actually Typically it's gone in the next few weeks. in addition to his role at Northshore University Hospital, Dr. for Noy also conducts research in Essential Tremor through North Wales.
Feinstein Institutes for Medical Research. And so actually I have an NIH grants and a principal investigator on a an R one, which is a special type of grants from the NIH investigating tremor and how different areas in the brain communicate with each other post-treatment. So when we do these procedures on these types of patients, we want to see what is actually happening in the brain because maybe we can make these treatments better.
do you think you're gonna get to a point where it's going to open up doorways for treating other abnormalities? Absolutely. So the only way we're going to progress in science is to in medicine is to buy, is to investigate what we have and see how we can use the same we're using here for other diseases.
So say, for example, deep brain stimulation, which has been around much longer than focus ultrasound, where we are intervening just like leaves or lesion sales, either one surgery, we're creating lesions in different pathways. These white matter tracts are abnormal. Well, initially they were used just for essential tremor or Parkinson's, these very common disorders.
But we have branched out and now we're tackling psychiatric disorders such as treatment resistant depression or obsessive compulsive disorder. We're looking at Alzheimer's disease. And these are we are treating these through surgery, not in a down the road. We possibly can be helping these patients through focused ultrasound, creating a lesion without doing surgery. But it's only through really studying these patients and the pathways and how things are changing.
Will we ever really get to know. Wow, on behalf of Rob, I want to thank Dr. Albert for for joining us on this episode all about essential tremor and this new innovative procedure that is changing lives for patients like Murray. Until next time. I'm Sandra Lindsay. And this has been another episode of 20 minute how talk. Get more expert insight from some of the leading voices in health care today.
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