A tremor had plagued Alexandra Lebenthal since childhood. Today her hand is steady and she can finally hold a glass with ease, thanks to Dr. Michael Kaplitt and a life-changing new procedure called MR-guided focused ultrasound.
Dr. Stieg: I’d like to introduce a dear friend of mine, Alexandra Lebenthal. Alex is a leader in the financial services industry who managed and sold the successful companies, started by her grandparents and led by her father. Alex, perhaps you could tell our listeners a little bit about your experience with essential tremor and how the symptoms affected your life.
Alexandra Lebenthal: Essential tremor was something that truly governed my life for really ever since I was a very, very small child, three years old, so it was constantly a part of my trying to function and being mortified about being found out or noticed. It affected my ability to drink, pour, thread a needle, right? I mean just about any activity that you can imagine. So it truly was something that on a daily basis was a problem in terms of my functioning.
Dr. Stieg: And probably an issue when you’re a teenager growing up worrying about what people are thinking and saying.
Alexandra Lebenthal: Definitely. Once in a while somebody would say, why are you so nervous? Actually got stopped by a cop once who said, why are you so nervous? I didn’t feel like going into into essential tremor, but definitely — even younger than a teenager, I remember I must’ve been about 10 years old, just weeping to my mother about it and there wasn’t, I don’t even know if they had a name for it then, but there certainly wasn’t anything that really could be done about it.
Dr. Stieg: Given the duration that you have this problem, had you tried other forms of therapy?
Alexandra Lebenthal: I tried three different medications. The first was propranolol, which lowered my blood pressure and I have low blood pressure to begin with. So I remember basically being passed out on the floor, not functioning. And I thought it was great. I’m not shaking, but I’m not moving either. And then I was on Primidone and Trokendi, and you know, I took them sort of out of a sense of duty, but they really didn’t do anything. So I considered very briefly, deep brain stimulation and my family and friends thought it was probably a little bit too extreme. So when targeted ultrasound came along, I really jumped at it.
Dr. Stieg: I have to say that I was always pushing Alex to be thinking about this, but here to tell us a bit more about essential tremor is Dr. Michael Kaplitt, a neurosurgeon and Director of the Movement Disorder Service at the Weill Cornell Medicine Brain and Spine Center. Mike Alex was your first patient in New York after the FDA approval last year. How did you decide she was a good candidate for this procedure and what steps did you take to assess her essential tremor specifically?
Dr. Kaplitt: Right. Well, she obviously was in good general health, which was a real positive, and we were convinced that she truly had essential tremor. So we want to make sure that it really is essential tremor, not something else. And that was very clear from her exam and her history, and her family history of having family members with this. So once we were convinced that she truly had essential tremor, that she truly was not, did not have reasonable medical alternatives, and that she was in good shape, we felt that she was a good candidate for a targeted surgical intervention. Specifically with the ultrasound. I think number one, it was something that she found very attractive because we were not going to be going actually into the brain itself and we wouldn’t be leaving a device behind in her body. And then the only other thing that we needed to make sure of was that her skull was favorable for this procedure.
Dr. Kaplitt: The one thing that we have to do for this procedure is we have to do a CT scan on patients, even if they seem to be good candidates because roughly five to 10% of people have skulls that are actually a little too soft for this procedure. And will absorb all the ultrasound, like when you scream into a pillow and the sound doesn’t go through, so it can make it difficult to get it in for the brain. It’s a very small minority of patients, but we’ve seen a couple in the last year that are not favorable for this procedure because of their CT scan and they’ve actually gone on to have successful deep brain stimulation.
Dr. Stieg: Well, I always knew that Alex was never too soft.
Alexandra Lebenthal: I have a thick skull! That’s just put that as it is.
Dr. Stieg: So for our listeners, Alex, can you tell them what it was like going through the procedure?
Alexandra Lebenthal: Yes, so I will say the thing that probably took my attention away from the procedure itself was the fact, and this is for a woman, it’s a big deal that you have to have your head shaved. Um, and coming from someone who had long brown hair down to my back, this was obviously a big deal. So that was probably one of the more traumatic moments of it. But I will say I was so excited to be doing this thing that was going to change my life, that I wasn’t as scared as you might think I was. And what happens is, as Dr. Kaplitt knows, they shave your head, they put this metal frame on your head to keep your head still, which is also a little bit traumatic, but then you’re in the CT scan and there’s all these people around and people from the company that developed the technology and my husband was there that I truly felt like I was part of this exciting community that was a part of making this incredible change in my life that would ultimately change other people’s lives.
Alexandra Lebenthal: I will say, and I don’t even remember, Dr. Kaplitt, How long you were actually preparing for it, but I actually fell asleep, so I was kinda not, not with it until it was actually time to start the procedure. And then, that was so amazing because you start doing these drawing spirals, which anyone who has essential tremor knows is basically impossible: drawing a spiral and then drawing a straight line, which looks like a seismograph or something. And then they do the targeted ultrasound and keep bringing you out of this CT scan. Uh, the MRI, excuse me, to see how you’re doing with the spirals and straight lines and just seeing it getting better and better and better until finally you’re drawing a straight line. You’re drawing a spiral that doesn’t jab all over the place. I mean, my life changed right then and there. It was absolutely incredible.
Dr. Stieg: Having been there also, I can state that her husband probably compensated with the anxiety level standing on the outside watching it happen. Mike, what was it like for you while you’re doing this the first time?
Dr. Kaplitt: Well, the first time we ever did this, I really was miraculous. It’s one of those things where you know, you understand the science behind it. You understand the anatomy. I understand enough of the physics to be dangerous and so you understand intellectually about this, but actually watching without having to open to anybody’s head, watching them before your eyes get better and then seeing on the screen on the MRI that you’re actually taking out this very small spot in the brain without ever having opened up the head and without affecting the nearby areas really is truly remarkable. Now, like anything, unfortunately it’s become a bit routine for us, but that’s good for the patients, but the wonder is taken away a bit, but those first few times, it’s hard to believe that this is really happening after spending decades having to open people up and actually go inside the brain to get to these areas.
Dr. Stieg: Mike, I’d like you to really describe how the focus out resound procedure works.
Dr. Kaplitt: Right? So the idea behind focused ultrasound is that ultrasound waves will actually go through the skull and they will go into the brain, but they are unfocused. They will just sort of spread out throughout the brain and on their own, each individual wave or beam of ultrasound is fairly safe. We know that women who are pregnant will have many ultrasounds throughout pregnancy, including of the developing brain, which is usually more sensitive to problems. And yet ultrasound has never been associated with any problem in developing embryos and fetuses and the children do just fine. So we know that the ultrasound as it goes through the brain is relatively safe on its own. The idea here is that we have a an array of sources of ultrasound in this helmet and the helmet comes down over the head very much like the helmet of Darth Vader that came down over the top of his bald head.
Dr. Kaplitt: We shave the whole head. We bring this helmet and we fill it up with water because ultrasound does not go through air very well. So we filled the helmet with water. So the top of the head is sitting in a water environment, just like the jelly that people use for ultrasounds of the abdomen or something else. And then these 1000 sources all will focus those beams and concentrate them on a single spot. The spot in the brain, in the middle of the circuit that regulates movement. And stability and that is the spot that’s not functioning properly that we want to take out. So as these beams go through the brain, each individual beam will safely go through the brain, but together when they all concentrate and converge on that one spot, they will add up their energy. So now you will deliver an enormous amount of energy just to that one deep spot in the brain without affecting the rest of the brain.
Dr. Kaplitt: It’s very much like when you were a kid, if you took a magnifying glass when it was a sunny day and try to shine the light on a leaf and you could burn a hole in the leaf because you were concentrating all of the beams of light onto one spot on the leaf and adding up the energy there to burn that leaf. It’s the same concept here so that the rest of the brain is left alone. The rest of the brain is safe as these low energy beams go through, but they add up at the spot to be able to take the area out and then the patients are awake during this, because we do this very slowly, we start out with a low amount of energy that’s not permanent to make sure we’re in the right spot and when we know when the right spot with the low amount of energy, the tremor will start to get noticeably better and we make sure that there are no side effects, no problems with speaking or doing other things and we have them repeat the same things over and over again to make sure they’re speaking okay.
Dr. Kaplitt: We have them draw spirals to make sure the tremor is okay and once we know we’re in the right spot, then we increase the energy until we make it permanent and the tremor goes away.
Dr. Stieg: Alex, I’m sure that many of our listeners are wondering what it felt like when you underwent this therapy. Was there any significant pain?
Alexandra Lebenthal: There was no pain. Well, let me take that back. And it was not directly from the procedure itself, putting the helmet or the halo on — first they had to put four shots of anesthesia and that’s what hurt. Nothing else hurt. The targeted ultrasound beams themselves. I compare to when you put your finger on a plug and by accident get the metal part, except you know you’re not going to get electrocuted. So no it didn’t. It didn’t hurt at all. And nothing afterwards.
Dr. Stieg: You said earlier that you noticed immediately during the procedure that you could start drawing the swirls and so you noted the immediate change. It’s been a year since you’ve had it done now. How has it changed your life?
Alexandra Lebenthal: So many ways and some things are seemingly innocuous to the rest of the world, but we’ve all walked into cocktail parties and there’s the tray of seltzer and water and wine. And for me in the past, my heart would be faster. I would go through this, this mini anxiety attack of my hands going to shake and potentially knock over glasses of wine. And so just being able to walk into a party and just lift that glass of wine, pouring milk in my coffee in the morning, walking with my coffee across the room and knowing it’s not going to jerk. Standing with someone and holding something and for anybody who has essential tremor, you know what it’s like. It’s hard to completely explain because it is so basic to who we are as people, but having that fear of somebody seeing something about you and wondering what is wrong with her and knowing that that doesn’t have to happen anymore. I had a meeting the other day and somebody said, would you like a cup of coffee? I have this internal dialogue with myself about, “Yes, I would like coffee.” You have no idea what it’s like to actually be able to ask for a cup of coffee and know that my hand’s not going to— I mean literally you have these conversations in your head and kind of chuckle at how easy it is to be normal in the most normal circumstances.
Dr. Kaplitt: I’d like to add a point, which is that first of all, for me, I think the fact that people are willing to undergo something like this is also equally miraculous. It’s something that is new and hasn’t been around for a while. And to be willing to accept that, I think, is an amazing thing. One of the differences between movement disorders and a lot of other diseases is that it’s a very public problem. You can have a lot of diseases in your body that nobody knows about when you go out to dinner or when you do other things as, as, as terrible as it might be for you and your family and your own life. But when you have a tremor like this, it affects every facet of your interactions as a human being with other human beings. Because this is not something that you can hide. And stress makes tremor worse. So the more you stress about it, which is natural, the worse it gets. So that gives you an idea of how problematic it is for people and why they’re willing to undergo something like this. And we’re just thrilled to be able to offer something this revolutionary to everyone.
Dr. Stieg: I think part of the issue has been that you lived with it for so long that you actually adapted to it and I really can’t overemphasize the emotional stress that that really puts on a person’s life when they’re dealing with what Dr. Kaplitt has said, which is something that is on public display.
Dr. Stieg: Mike, you only one side of the brain at a time which affects one side of the body. Why is that?
Dr. Kaplitt: The area of the brain that we are essentially removing with this ultrasound, or destroying
— It’s a very small spot but it’s in the middle of a circuit that controls stability to some degree and there is a bit of concern that if you do the same procedure on both sides of the brain that there might be slightly higher complications and problems with speaking or with balance and stability. It’s also a very high rent district, this area, so there are important things right next to it that we’re trying to avoid, which is part of why this has to be done at a place that really has experience and knows what they’re doing and why it takes a while because we do this slowly, so we make sure that we’re only getting the spot that we’re interested in, but there is also some concern that if you do creep up on some of the nearby structures of bed that it usually doesn’t cause much of a problem if it’s only on one side, but if you do that a bit on both sides of the brain, then the brain may not compensate for those things as well.
Dr. Kaplitt: Having said that, there is some evidence from some other types of procedures that this could potentially be done safely, particularly since we are doing this in a way where we actually can see what we’re doing so we can try to tailor it in a way that would be much more precise than anything that’s been done before. And so we and some other centers are getting together right now and working on a study that will hopefully allow us to treat the other side of the brain and people who are interested. Like Alex, we’ve already treated the first side in order to see whether this can be equally safe and effective on both sides.
Dr. Stieg: So as we know, essential tremor normally affects both sides. Alex, now you’ve got one hand that’s not shaking and one that is, how does that affect life?
Alexandra Lebenthal: So I would do the second side in a second. I’ll raise my shaky hand and my, my non shaky hand and volunteer. Certainly my quality of life is infinitely better. But there are certain things that I do notice and I will say sometimes I am slightly imbalanced, but to have both sides done would truly be an amazing thing, and perhaps I’m too brave and wanting to jump in with both hands first, but I think it would just be something that would really make my life complete.