Moving Forward: Learning About Essential Tremor


>>I’d like to teach you a little bit about
essential tremor, and update you for those of you that know already some about it. So what I plan on doing is kind of
going through some stuff about tremors, definitions and some background stuff. And then I will get to recent updates
and some research as well as treatments and updates with that sort of thing. Having trouble hearing me? Need more? Is it on the bottom? So don’t worry I’ll get it. There — no. Is it over there? Oh okay. Well no wonder I couldn’t
find the button, thank goodness. Especially if I’m talking
about deep brain stimulation, if I can’t work this thing we’re in trouble.>>Is that better?>>Is that better? Can you hear me better? Okay if I fade or anything please
don’t be shy, I appreciate that. So okay.>>So that’s okay with everyone. No?>>No higher? Okay I’m a soft talker according to my husband. Okay can you hear me now? Now is that good? Okay you’ll get sick of my voice pretty soon. So alrighty so let’s get to it. So first of all tremor, what
do we define tremor as? So that first — I just kind
of put that first definition up there that has lots of words to it. That — I give that to the medical students
to make sure they’re paying attention to me. So it’s a very wordy way of saying that
a tremor is shaking that’s rhythmic and has a certain pattern to it. And usually most abnormal movements — tremors or whatever abnormal form of movement
it is will disappear when people are asleep, especially in deep levels of sleep. So there’s different types of tremors,
and one type is a resting tremor. And so this occurs as the name implies when
someone’s not using their hands or you know if it’s affecting the arms,
it can also affect the legs. And here’s a guy who has
some Parkinson’s disease and he has a very classic Parkinsonian tremor. There’s in contrast to that is an action
tremor or a kinetic tremor is a technical term. And this occurs when the body part is being
used, so often we’re talking about arms but it can be the head or
voice, it can be legs as well. And then there’s also something called
a postural tremor so when limb is in a certain position that’s
when the tremor will come out, and so here’s some examples of that. This woman is showing us her
postural tremor to begin with. So she’s keeping her arms in a certain
position and you can see her tremor obviously, and now she’s going to show
us her action tremor. And these are things we commonly do in
the office to evaluate people’s tremors. Because it really — I mean it sounds kind
of obvious but sometimes you that know that who live with tremors
they can kind of come and go. And if we can see the tremor
then we can be much more helpful. And so we’re very technical having her
poor liquid from one cup to another and now she’s been asked to
draw a spiral or a circle. And she has trouble even keeping
that big marker down on the paper. And you can of course see her waving
it’s — whoops no it’s just repeating. So there’s various tremor syndromes and so when
you’re someone seen in my office I’m trying to figure out: Well what is
really causing their tremor? And so I list a bunch of
the tremor syndromes here, the most common one is enhanced
physiologic tremor. And we all have this and
this is the tremor that comes out if we’re nervous, if
we’ve drank a lot of coffee. Let me see if my enhanced physiologic tremor
comes out a little bit if you look at the dot, because I’m excited about being here. And there’s also drug-induced tremors,
certain drugs will enhance tremors. And then there’s different metabolic things
that can cause tremor, worsen tremor. And then there’s different brain disorders
or brain lesions that will cause tremor. And so we kind of you know think of all of these
things when someone’s being seen in the office. And the most common thing that we
actually — well not the most common. But one of the common syndromes we see
is essential tremor, which is what we’ll of course be discussing more here. So last but not least is essential tremor. And so what is it? It’s a neurologic disorder characterized
by rhythmic involuntary shaking of parts — a part or parts of the body. And most commonly seen in hands
or arms, upper extremities. Can also be seen in the head and
voice and very rarely will people with essential tremor have
legs tremors and trunk tremors. So who’s affected? So at least 10 million people in the US
and many more worldwide are affected. And it’s actually 10 or more times
more common than Parkinson’s disease. Essential tremor affects
anyone at any age you know between early childhood to
old age it can have an onset. The age of onset, the severity of
symptoms, which symptoms are — which body parts are affected, response
to treatment and kind of aggressiveness of progression are highly variable. Even when this occurs within a family. So what are some of the symptoms? Of course shaking of the hands is
the most common one that we see. But again — and so people might start to
notice this when they notice some changes in their handwriting, or they
feel clumsy using eating utensils. And then gradually it will worsen
and become more constant and then of course more bothersome and easy to evaluate. Some people will notice a change in their voice and that you know is the first
sign sometimes of a voice tremor. They might start to feel hoarse or
something like that and that can be it. Also the head can be involved and people who are developing a head tremor
might first notice some neck pain. Or that actually when they’re trying to
read they’re having difficulty focusing. And they may not feel their head shaking
but other people might notice that shaking. So here’s an example and
hopefully this has a little sound, I’m not sure if the sound will work. Oh I guess not. Anyways what she’s doing is
saying the days of the week, but that part’s not working for some reason. You can hear or you can see her
head tremor and hers is very mild. Many of you might remember Katharine Hepburn and
she was somebody who had a severe vocal tremor. So it’s kind of halting speech that people
will have or it can be a real whispery type of speech depending on what
their vocal cords are doing. So essential tremor is a progressive syndrome. And so it will gradually worsen
over years, usually over years or decades not usually month-to-month. If there’s a sudden worsening then
we wonder well what else is going on? You know are there changes in medicines
or something along those lines? And again it can include head, voice, and any
combination of head, voice, and extremities. And eventually it might affect people’s balance. So there’s accumulated disability as it worsens. So at first people can kind of
tolerate it and work around it, but eventually it does become disabling. Because if it’s affecting someone’s hands, every
time they use their hands there’s their tremor and they lose the use of their hands. If it’s affecting their voice they can’t speak, and the head tremor has a
variety of problems too. Sometimes people will have a head
tremor where their head’s shaking no and so people think they’re kind
of like not particularly agreeable. Sometimes people have a yes tremor and
you know any of these things whenever — you know because we’re human when we see
somebody shake, if people aren’t familiar with tremor problems they’ll assume
somebody’s intoxicated or something like that. And so people will tend to
isolate themselves often times as their tremors worsen,
so it is very disabling. The essential tremor the tremor component — well so the essential tremor
has a more disabling tremor than actually a Parkinsonian tremor. Parkinson’s disease has a bunch of
different things that make it disabling. But the tremor actually isn’t one of
the major disabling things about it. But in essential tremor that
tremor can get quite disabling. Not in everybody, some people
have very mild tremor and it’s just bothersome their whole life. Other people it will become
increasingly intrusive, and so then they’re stuck
seeing somebody like me. And so then you know when someone comes in you
know people are often like well what do you do? How do you know what’s going on? And so it’s like any medical
problem we get a history. So we want to know the story of how the
symptoms developed, how they worsened, what it interferes with, what makes
it worse, what makes it better. We want to know people’s
current medical history, as well as their past medical
history can give us clues into you know ruling things
in or ruling things out. And also family history is important and
I’ll talk more about that in a few minutes. And when we’re evaluating tremors we’re often
asking people how it responds to alcohol. And so essential tremor is something that is
exquisitely sensitive early on in the course of it to small amounts of alcohol —
oftentimes, not 100% of the time but very often. And we’re not encouraging alcohol use to treat
it by any means, but that can also be a clue as what kind of tremor are we dealing with. We’ll look at the medications as I told
you earlier you know certain medicines can enhance tremors. And so we want to see if there’s
anything like that going on, you know that can also may be help
us with management down the line if we need to you know treat this. And then of course we do our
physical exam and neurologic exam. And the neurologic exam is basically
putting people through a bunch of tests you know testing different
parts of their nervous system. And again this is how we diagnose it. People always want — say: Well geez
there’s no diagnostic test for these things. The diagnostic test is the
neurologic exam and history. Sometimes we need to get a blood test or
a brain scan, but often times we don’t. If we can get a good history we can
see the tremor and evaluate you, and if your neurologic exam is
otherwise normal you know there we go. So the test is our exam. So oftentimes people are worried
do I have essential tremor, or Parkinson’s disease, or what? Many people have been told they’ve had
— you know early on they had one thing. They go see somebody else and oh now I have
another thing, and oh maybe you have both. I mean so tremors are actually
kind of hard to diagnose. And sometimes that’s because when someone
comes to the office we don’t get to see it, or you know we’re just —
you know they can overlap. And so I just made this little comparison chart
for you showing you know some things that we try to look at to differentiate the two. And so essential tremor has an action tremor
where as Parkinson’s has the resting tremor. The frequency — some places will
try to look at that very closely, that’s not particularly helpful
in my experience. In Parkinson’s disease there’s
other symptoms that often will show up — not always though early on. Sometimes all people will have
in Parkinson’s is a tremor, but often times they will have
some other signs and symptoms. And those things do not occur
in essential tremor. Oftentimes essential tremor will eventually
affect both sides, it may be a bit asymmetric but usually both sides become affected. Sorry I’m wiggling my thing all over. Good thing there’s no cats in the audience
they’d be following my little red thing. Anyways so in Parkinson’s disease, in classic
Parkinson’s it will be very asymmetric. They’ll be a certain side
where the tremor started and that side will always stay
worse than the other side. So and in essential tremor it’s often familial, there’s a hereditary component that’s
been known for years and years. That you know — that you know in fact it
used to be called benign familial tremor, you know and then it was
benign essential tremor. Well we realized it’s not really
benign because it can be so disabling. So now we just call it essential tremor. So and some people will have both,
and there’s a certain number of people that with essential tremor that will
go on to get Parkinson’s disease. And we can’t tell that early on
so you know that is a possibility. And but it’s you know there’s — you
can see numerous like percentages. I’ve seen anywhere from 10% to 30% of people with essential tremor will
go on to have Parkinson’s. Now I don’t know if all those people
were properly diagnosed to begin with, or you know sometimes these studies are based on patient’s histories and
they’re not always accurate. So I mentioned earlier that we don’t usually
need to get neural imaging to diagnose this. However there of course is
an imaging thing available. I’ve yet to order one but you’ll see you this
and so this is something called a DaTscan. And what occurs is the person takes a
radioactive tracer and then we see how that tracer is taken up in the brain. And in somebody who has essential
tremor it’ll look normal, so you’re seeing this bright
stuff is what to focus on. And so that’s what a normal brain —
so-called normal brain will look like. In contrast to somebody who
has Parkinson’s disease, where the uptake of the tracer will be impaired. Now you know like I said usually
you don’t need to get this scan, but it was FDA approved a few years ago in 2009. Some practitioners really like
to rely on this and some don’t. I would recommend if your doctor is
talking about ordering one of these, that you check with your insurance
company and make sure that it’s covered. Because it’s a very very expensive test and
many insurance companies will not cover it. Usually you can go get a second opinion
by a movement disorder specialist and get you know the same
answer without being exposed to you know radioactive tracers and high cost. But you know sometimes the — you know your
doctor might have a real need to get it. But my — you know so it can be useful. My bias is that it’s not particularly useful,
but you know everyone has their biases. The but just really make sure that
your insurance will pay for it. Because then it in my view it causes
harm because it’s costing you money that you know maybe you didn’t need to spend. Cost as a side effect, that’s
what I always tell people. So anyways so moving on. So what’s occurring in the brains of
people that have essential tremor? What’s going wrong? Well we found that it’s a problem with a
certain part of the brain called the cerebellum. And the cerebellum is Latin for little brain. And so here in this diagram I’m — the
arrow’s pointing to the cerebellum. So this is a side view of a human brain
and you can see the cerebral cortex here. And down below is this little brain
and there’s the brainstem and stuff. Now it’s not really red, it’s just kind of
highlighted red for you know this picture. And this is part of our movement control system. It doesn’t initiate movements
per se but it monitors movements. And it gives us feedback on how we’re moving, and so it helps us produce
coordinated precise movements. Or coordinate you know at certain
timing, so in certain rhythms or rates. And it helps us refine details of our movements. And so things are messed up in people’s
cerebellum we think when they start to show signs of essential tremor. And the motor system of course is
quite complicated and don’t look at all the details of this diagram. But it’s just to show you
there’s many levels of processing. There’s the cerebral cortex,
the deep brain structures. The cerebellum is this little
thing that’s winging out here on the brainstem and the spinal cord. And so the cerebellum is getting information
from nearly all of our senses: vision, touch, hearing, you know tactile, position sense. And it’s taking all that
information and processing it. And then sending back information to various
centers to help refine movements and let us know where we are in space, how
our position is changing. And so it’s kind of monitoring
and processing all of that. So it’s quite a complicated structure. And there’s some thought that there’s
something called central oscillators. So there’s brain cells that
are spontaneously firing in a certain rhythm, kind
of like a little motor. And it’s felt that unmasking of that motor
might be what’s driving essential tremor in some people. And so a lot of the systems are set up in
the brain to like inhibit or dampen lots of movement, or lots of brain
activity so you can get better control. And so if that inhibition is taken away
and these central oscillators are working out of control, then you might get this tremor. So it’s kind of like there’s rhythmic
activity in certain heart cells that help our heart beat at a certain pace. And it’s thought that there’s
certain oscillators, they’re called oscillators there
in our brain that are active. That can promote these you know neuronal
firings that then when they’re not modulated or corrected properly will result in tremors. So here’s a picture of a
cell from the cerebellum. And the cell body is here, and then you can see
all these intricate projections and branches. Each of these little branches is
touching another cell with branches and so they’re communicating you
know lots of detailed information. And this is you know considered kind of a gross
picture in a sense, although this is taken from under a microscope with special staining. But you know there’s all sorts
of intricate processing going on. And in the past several decades we’ve been
able to do studies on brains of people who had essential tremor and died. Didn’t die from essential
tremor but died with it. And we’ve been able to find out that there’s a
lot of cell loss in the cerebellum that occurs. And so cells such as these
are damaged or missing. And even you can see there’s something
called purkinje cells a certain cerebellum — a cell in the cerebellum. There’s these things I’ll call torpedoes,
the pathologists will call torpedoes. And they’re these little swellings — abnormal
swellings of those fibers and branches that are — that they can find on autopsy
specimens of people who had essential tremor. And so we think all of that disruption
causes you know remodeling of the circuitry and stuff that’s not particularly
healthy or useful. You know and so then as that worsens
that’s why the tremors are worsening over time for some people. So there’s another group of people
that we kind of surprisingly found when studies were done of autopsy specimens. Where they formed something called Lewy bodies. Now Lewy bodies are normally
associated with Parkinson’s disease. And so a Lewy body you can see —
whoops I knew I was going to do that eventually, it’ll come back. Is one of these little round
reddish pinkish things. And that’s an abnormal accumulation
of a protein called alpha-synuclein. And as I said that was always
associated with Parkinson’s disease, and there’s certain brainstem regions where we
see it accumulating first and we can follow it. Well it was kind of surprising to us to find
out that there’s Lewy bodies in some people, not all of the people who died
that had essential tremor. And their Lewy bodies were found in
a different part of the brainstem. And you know it kind of goes along with our — the people and the percentages of some of
the studies seem to match the percentages that we see of people that have
essential tremor that then go on and develop Parkinson’s disease as well. So we think in those people probably
their problem is more this Lewy body thing in a different form, than
actually that cerebellar stuff or it’s a combination of the both — of both. Currently we cannot tell who is who and
in a way it’s easy for me to say this, but it kind of doesn’t make a difference from
a clinical standpoint as we would treat both. There’s no preventative treatment
for either one at this point. So you know we kind of have to
just keep monitoring for this and any good neurologist will do that though. You know if you come in and they’re treating you for essential tremor well they know you
have that, and they keep evaluating you. And they’re looking for signs of other things,
especially if you’re coming in and telling them: Geez that tremor in the past three
months has gotten really a ton worse. You know they’re keeping their
eyes open for other stuff too. So you let your neurologist
worry about that for you. And you know but it is —
there is some possibility and we have you know pathologic
signs that kind of hold that up. So it’s not that everyone was just
misdiagnosed or something, there’s some people who will have you know both clinical syndromes. So what causes that change,
all of these changes to occur? Well we know there’s a genetic component, you know over 60% of people
have other family members, and a number of other family members
with similar tremors as they do. Or whatever combination of head,
voice, and upper extremity tremors. And it’s usually in an autosomal
dominant fashion. Meaning if I have essential tremor my
children will each have a 50% chance of developing essential tremor. There’s been numerous genes
identified so far that seem to be associated with essential tremor. And there’s even more being found, this is
just like the top whatever number are there. And there’s studies going on where
actually they’re developing databases where they can analyze the genome of
people that have essential tremor. And they have that information and
they’re doing all kinds of things looking for different associations and
linkages and that sort of thing. So that might eventually lead to better
treatments for us or you know even something where could we prevent our
tremor from getting worse. Well you know we have a little bit of tremor, but then you know can we make
sure it doesn’t get beyond that. There’s also a thought to
be an environmental affect, so some sort of environmental
toxin might play a role too. So maybe you have a genetic predisposition and
then something else has to happen to trigger it. And maybe that affects the severity
or something too, we don’t know. So I just listed a couple examples. There’s something called a beta-Carboline
alkaloid that can be found if you cook meat at super high temperatures
for a really long time. And when we study brains of people who have essential tremor they’ll find high
amounts of that in the brain sometimes. And so it’s thought: Oh is
that kind of like a neurotoxin? We don’t know for sure. I mean a lot of this is some even
epidemiologic you know relationships, not always autopsy studies. But just you know looking at a population saying
you know some of these so it’s not definite. But there’s also been studies
showing higher lead levels in people that develop essential tremor. And there’s some thought that you know
if there’s these abnormal proteins that well maybe those proteins just
can’t even handle the normal amount, and that’s why they start
to — of whatever substance and that’s why they start to deteriorate. So there’s all kinds of studies looking
at things like that, so that we can see if you know we can avoid those things. Or you know if that is something you know will that affect treatment or
something down the road. Currently it doesn’t but that’s information
that you know will help us in the future. So research for you know causes and the pathology are understanding the
genetics more closely and seeing if that leads to any treatments or interventions. Proteomics is the study of these abnormal
proteins and how they can function and malfunction and affect things. And then of course environmental factors. And then we’re — you know we’re always
looking at the brain function itself, you know what is that neurophysiology? The electrical properties
— how has that changed? Can we detect that? Can we modulate that? You know there’s imaging studies
that are being done you know to see is there you know a way
to detect it somewhat earlier. You know to see if there is
something where we find oh gosh if we can slow it down by using this. Well let’s see it when it’s you know
hardly before it’s clinically started or showing symptoms. And then ongoing pathologic studies have
been very helpful in us figuring things out. And gearing scientists into knowing
which direction maybe they should look for different malfunctions, which
then can lead to different therapies. So for treatment you know
what do we have for treatment? Well of course our goal of
treatment so right now there is no like type of preventative type of thing. You know when the tremors intrude into someone’s
life enough and prevent them from doing things, well then we consider starting treatment. And so there’s a variety of treatments that
we have and we’re trying to at this state of the game we can dampen the tremor. And we’re trying to of course it goes without
saying improve function and quality of life. And so there’s medications, many of you who
have tremor might’ve been on some of these. I tried to put a little check mark in
front of the ones that I tend to use. Those beta blockers are the
first line of treatment, they can dampen tremors for a number of reasons. Usually propranolol is the one that’s the most
successful, at least in my clinical experience. There’s anticonvulsants or
anti-seizure medicines and those can work by inhibiting certain brain function and
in some cases that will dampen tremors. And I list a few of them there
that have been successful. And then benzodiazepines are always
listed, those are basically sedatives. And you have to be very careful with
those because they’re highly addictive and people often will get very sleepy
and kind of intoxicated like on them. So it’s easy to fall down
and cause secondary problems. So I don’t really use those but I just
put them up because you’ll see those and those I would say look at
them and try to avoid them. And there’s also some alternative therapy so
it’s nice to give people some tools of how to cope with their tremors right. And to you know because people who live
with tremors are people who live with people who have tremors will know
how those tremors vary. And of course one thing that’s very common
in any abnormal movement is if you’re anxious or revved up about something, angry, even super
duper happy, your tremors go crazy so to speak. And so it’s nice to be able to give people some
tools to help calm them down when they can. There’s some alternative therapies that haven’t
been really you know standardized clinical trials proven useful. But anecdotally some people
will notice some benefits from acupuncture, hypnosis, and massage therapy. If stress is a big trigger of exacerbating and enhancing those tremors often times there’s
biofeedback mechanisms, or forms of meditation, or different behavioral therapies
that can be very useful. And also I wanted to mention occupational
therapy can sometimes be useful. They can give you adaptive advice — advices. Adaptive devices to you know
use if your tremors are bad. And if you go there’s a wonderful website: the International Essential Tremor
Foundation has a good website. And if you go in there and search
alternative therapies they will list a bunch of you know different things. Now you want to be careful, some of
them are expensive and so you don’t want to just go throwing your money away. But they also have things on there like good
apps if someone’s using like a smart phone or iPad you know that can get quite
difficult with essential tremor. So there’s even — there’s some apps
or some computer things that you can do for like a laptop or regular computer,
you know to help yourself adapt to it and be able to continue using it. So there were too many of them to kind
of list here for you, but anyways. But that’s a good website
for a lot of information but most specifically I found good stuff
on there for some adaptive devices. So people you know what’s
going on for drug research? Well I can tell you there’s been a whole
bunch of drugs that we use for other things that we’ve tried to see in
essential tremor to see if they work. And there were a bunch of negative
results so we won’t worry about those. But there are some areas that are pretty
interesting that some progress might be made. So alcohol — I’m not saying use
alcohol to control your tremor, but it leads to the next drug thing. The alcohol we know in at least 70 or more — 70% or more people will significantly reduce
their tremor, you know small amounts of it. If they drink too much they’ll notice their
tremor kind of being rebound worse the next day. But you know it’s been essential tremors
often very exquisitely sensitive to alcohol. And so for years scientists have
been saying what is it about alcohol? That you know it’s not just the — you know
you get a little tipsy and calm from it. I mean there’s something more, there’s a
dramatic improvement in some people’s tremors. And again I’m not saying use it
for tremor control but you know. So they’ve studied various agents
over the years trying to replicate that effect without causing intoxication. And there’s been a more recent
substance that’s showing some promise. First I need to make sure — they’ll yell at me
if I don’t say avoid excessive use of alcohol of course, and don’t drink and drive. So I’m not condoning using that but anyways. But you know that affect his been studied
and something called octanoic acid has gone through some clinical trials that
initially we were quite excited about this. And then we got the initial
results and we were like oh darn it, it really didn’t do a heck of a lot. And this is something that’s
already FDA approved. I think it’s — I don’t think it, it’s part of
artificial orange flavoring in some substances. Now don’t go eating oranges, I don’t think
it actually has anything to do with oranges. But it’s an artificial orange
flavoring that’s added into some things. Anyways so the initial studies we’re
like eh, but then when they looked at them closer they found some good — you know
there’s always the initial like main results of a study that you’re looking at. But then there’s these secondary findings of
you know like trends and stuff that they see. And they saw some pretty significant
findings in those more secondary outcomes. Which has led to this substance being
researched further in clinical trials, you know adjusting dosages and stuff like that. And what’s happening is that
if you take really a lot of this stuff it seems to
have a benefit for tremors. However so far it’s been kind of impractical, like you’d have to take 20 pills three
times a day or something like that. And so they’re working on refining it so
it would be actually something practical. So anyways so that’s something
I’m keeping my eyes on. And then there’s other drugs for example
sodium oxidate there’s trials using that. This is a substance that is used in people
who are going through alcohol withdrawal. And it can dampen a bunch of alcohol
withdrawal symptoms including tremor. And they’re trying to see
is that specific to tremor, or is that just an alcohol withdrawal thing? So they are doing some trials, it’s
usually a well-tolerated substance. So they’re doing trials on people with essential
tremor to see if that might be an option. Because you know I listed
some of those medications and although we have some medications that
can give people some good tremor control, you know they all have side effects. Some people don’t have those side
effects but that potential is there, so many people may not tolerate them. Plus there really weren’t that many, I mean a handful of medications that’s
really you know not that many in this day and age for treating something —
you know giving us enough options. And then the last thing I have listed is this
SAGE-547 which is something that modulates one of the inhibitory neurotransmitters
in the brain. So if that theory of these central
oscillators you know these neurons that are firing uncontrolled is true, a
substance like this could dampen those. That’s how many of the anticonvulsants, the
anti-seizure medicines that dampen tremors seem to work through one of these GABA like systems. So it’s just a more specific agent for that. And then we can’t not talk about tremors in
this day and age and not talk about cannabis. Now again I’m not condoning using
cannabis but this comes up you know so we might as well hit it right on. So you know so far I mean you can meet
many people who enjoy smoking marijuana that will say my tremors are
amazingly better with it. And you know and there could be
many reasons for that you know. And what we want to see though
from my standpoint, from the medical perspective is I’m
not going to recommend marijuana unless if I see a direct tremor benefit. That you know is something that’s
working on the neurologic system, not just something that’s
working as another sedative. So there are clinical trials
going on you know testing this. So but you have to be careful
because you know in the press with all this let’s legalize marijuana stuff. You know there’s a lot of information
some of it good, some of it bad out there. So you just really want to know
your source of information. There have been studies and so
there’s no studies yet in — there’s ongoing studies in essential tremor. But no conclusions yet that show significant
benefit from a research standpoint. In multiple sclerosis they did the same and
people with multiple sclerosis can get tremors that are somewhat similar to
people that have essential tremor. And these people would claim my tremors
are just wonderful, I have no tremor. And then you know there’s ways we can in
a study objectively measure these tremors. And so when they did the study and measured
those tremors sure enough there was no real difference in those measurements — of
the objective measurements of the tremor. But people claimed that it was better for
you know reasons you can speculate on. So the thing to know about any of this
stuff is that there are cannaboid — cannabinoid, that’s hard to
say — receptors in our brain that are associated with the motor system. So here in the basal ganglia that’s a motor
center, the cerebellum we talked about that. Unfortunately it’s also like in
the memory centers the hippocampus. But this does not mean that
we have those receptors because we’re supposed to be using marijuana. But it’s — you know it’s like well you know
maybe that is a reasonable thing to explore. And there is you know there’s marijuana
that has you know marijuana has THC in it, and it also has something called CBD. And the THC is that psychoactive thing that
makes people high we think you know mainly. And the CBD doesn’t seem to
do that as much or if at all. And so there’s studies going on looking at
that CBD oil to see if that affects tremors. Now you can go online and buy a whole
bunch of CBD oil and they’ll claim that it does all kinds of miraculous things. You know I would wait and save your money till
we know for sure if it will really do anything. So I’m you know keeping my eye on that. Now of course let’s say they do find
that oh yeah there is an effect. Well we’ve got to be really careful
don’t we, because you know marijuana — using marijuana to control your tremor’s
like using alcohol to control your tremor. If you know I mean if it’s
having this psychogenic benefit. So again you know I’m not so
sure that this is really — you know I keep an eye on it kind of because of this whole legalize marijuana
business and medical marijuana. But I’m not particularly optimistic that
this would be a really practical thing to do. But sometimes we’re wrong and so and
that’s how we make medical progress. So anyway so I’m not suggesting
that you do this, but it’s something to keep an eye open about and be informed about. So then if our medications and all
this stuff fail what do we do then? Well sometimes we can do Botox injections. So Botox we inject in certain muscles and it
blocks the message that the nerve is bringing to the muscle, so the muscle
can’t contract quite as well. So it kind of weakens the muscle in a sense. And this can be used — it’s most useful
actually for voice tremors and for head tremors. Extremity arm tremors it
sometimes works a little bit, but usually causes unintentional weakness and
isn’t usually in a sense strong enough to. And we can’t isolate the muscles well
enough to have a very good result with it. But sometimes depending on what the
tremor looks like we might try that. It’s sometimes really hard to get
insurance companies to pay for it. They’ll pay for the voice tremor
treatment not the head tremor so much, or the extremity tremors depending on what
you know your doctor is billing it as. But it’s something you know that we kind
of consider would that be something or not. Because then the only other options we
have are the surgical options after that, and there’s various surgical treatments. So in any surgical treatment
that we do these days the part of the brain called the thalamus
is the target for this. And so this is a relay center of the brain,
so a lot of the information that is leaving and coming to the cerebellum
will go through the thalamus. And we found years ago like
you know before I was born, and way before some of you guys were born too. That when people had strokes in this part
of their brain their tremor would go away, and I have patients where that’s happened. Now don’t go having any strokes because
you’ve got to get it just right on. But you know it led to the neurosurgeons
you know thinking heck I could do that to somebody and get rid of their tremor. You know I could go in and lesion that
part of their brain and so they did. So the initial thalamotomies they put this
electrode down in the brain and use electricity to heat the tissue and burn it and destroy
it, and the persons tremor would go away. Well when they tried to do that
bilaterally it didn’t go so well. People just — I mean the best
way to put it, they just get weird if they have bilateral thalamic lesions. And so you know so that kind
of fell out of favor. So then you know with technologic
advances gamma knife therapy. So using radiation to burn a lesion into the
brain was developed and used for this purpose. And it can work okay except it can
have this longer-term side effect. Any radiation therapy you know
in the brain it hits the target, but then eventually the surrounding areas for
some reason get affected and can die off too. And so they don’t have a good
way to control that so it’s kind of like a little bit of an uncontrolled lesion. And so you know sometimes it’s
good, sometimes it’s very tricky. And so it’s you know kind of one of those
controversial treatments for a tremor if you talk to neurosurgeons
who often are doing this. And if you talk to a bunch of neurosurgeons
some of them will be real pro that and they use gamma knife to treat everything, and they might have good
equipment and good results. And there’s others that are
like whoa no that stuff is bad. So you know so some centers will
offer that, we don’t do that at UW where I practice but it’s something to know of. A newer therapy that’s come out and was just
recently FDA approved was focused ultrasound. Again we’re not yet doing that at UW, I’m not
sure if we will get into doing that or not. And then there’s the standard
deep brain stimulation therapy. So and that we do do at UW, I’m not trying
to sell that because we do it there. You know in fact my patients
I try to avoid any surgery. So let me just go through
I think it’d be interesting to hear about the focused ultrasound. You know so there’s centers
throughout the United States just a few like I think 10 or less that are doing this. And it was just approved in July by
the FDA for whatever that’s worth. The studies that I looked at were mainly
looking at when they did it unilateral, and it was pretty successful
for that in many ways. Bilateral there’s not a heckuva lot of trials
and you know kind of the word on the street so to speak is that hmmmm yeah that
bilateral thalamic lesion doesn’t go so well. And in fact there’s other trials that
are going on looking for different — a different target of the brain that you
could do bilaterally to suppress the tremors that wouldn’t have the bilateral
thalamic bad outcome. But if you’re you know interested
in this I found this website: fus — for focused ultrasound —
foundation.org that you can look at and they give you good information. They’ll have this picture there but they
can give you some further information, they’ll be a list of centers doing that. The nearest one in the Midwest is
Ohio State University that does it. So in looking at it you know
something that you know my group — you know Nancy and the rest are
the movement disorder people at UW. And our neurosurgeon Dr. Lake you know we talk
about this like huh that’s an interesting thing. You know should we get involved in it or not? And you know of course from a
business standpoint it’s not as easy as saying oh yeah we want to do it. I mean there’s lots of money involved for
the equipment and all this kind of stuff. So you know were kind of figuring
out if we want to do this or not. And you know the pros and
cons are kind of equal. You know the pros: it’s not
invasive, single treatment, just takes a few hours, rapid
recovery if any recovery. And you know there’s no incision, there’s
no ionizing radiation like a gamma knife. And the studies report on average
about a 50% tremor reduction. Now of course some people will have
more, some people will have less. You know the cons is that well really it’s
only been shown to work unilaterally safely, bilateral stuff is still
very you know controversial. It causes a permanent brain lesion and their studies have some limited
follow-up, you know just a few years. Which when you’re doing something to a young person you know
they’re going to be living decades. And you know not that you have to wait
decades before you start a new treatment, but there’s you know always a
little hesitation and concern. Especially in tremor where there’s this effect
called — the technical term is tachyphylaxis. And so this is where treatment
that’s been effective will start to for reasons we don’t understand
rapidly lose its effectiveness. And tremors are notorious for doing that. You know the medicine works
for a while and then it stops, and it’s not always because the tremor is worse. It’s because it’s like the tremor
gets used to it or something. We see this even in DBS programming that you
know we have to change the parameters to kind of run around this tachyphylaxis thing. So you know the studies you know if they’re only
— their follow-up has only been a couple years. There’s some thought well is this really
going to be a permanent effect are not. And of course that is unknown maybe it will be, hopefully it will be or for
many people it will be. And again the studies reported an average
of 50% tremor reduction on average. Well you know you can put
that in either category because wow 50% cut in half that’s pretty good. But if there’s something that
can reliably get you 80 to 90%, well the 50% seems kind of crummy. So again you know you have to
consider those percentages. And knowing it’s a spectrum, you know so it’s just average meaning
some are better some are worse. People that undergo focused ultrasound
can have permanent loss of sensation. And so if you make — you know
let’s say I had a right arm tremor. If you make my hand not shaky but really
numb I might not have improved dexterity. It’s like the way to know what it
feels like to have a numb hand is to wear like a really heavy glove. You know and so it’s like well did
that really improve the function or just make things different? You know and again that’s
going to be very individual. But that can be permanent. When I’ve had patients with
strokes that have loss of sensation, they can actually have fairly
good movement of a hand and still be pretty impaired
and not be able to use it. Because you know they always
have to use their eyes you know because their hand won’t give
them any sensory feedback, so it’s something that can be considerable. And insurance reimbursement
because it’s so new again that would be something you know some
places seem it’s paid for, other places not. And so you know again and that would be
likely something that if this is proving to be effective the insurance will
follow, especially if it’s FDA approved. But just things to consider you
know all the time in new therapy. So I don’t know you know we’re
keeping our eyes open on this. Right now like I said at UW we don’t
do it, the closest place is Ohio State. There’s also other places and the website that
I mentioned earlier fusfoundation.org has a list and some contact information for people who’d
be interested in being evaluated for that. So the thing I know more or have experience with I should say is deeper
brain stimulation surgery. This has been around since at least 1997
even before, it was FDA approved in 1997. And so this is the procedure
where an electrode is stuck down into the brain, it’s fastened to the skull. A wire comes down under the skin behind
the ear into an electrode on the chest — under the skin on the chest wall. So it does require surgery
a very complicated surgery. But the recovery from the
surgery is actually not so bad. And I have a guest who’s going to come
and tell us his experience with that. He’ll be able to tell you that more but you
know it’s actually easier then having your gallbladder out it sounds like. You know you’re hospitalized for a few days and
you know there’s not a lot of pain and stuff. But still it’s brain surgery, it’s invasive
and there’s risks associated with it. Usually the risk of bleed or stroke is
about 1 to 4% depending on your surgeon. That doesn’t mean you’re having the life
threatening ending stroke or disabling stroke. Sometimes it’s a minor stroke and people are
just fine, but again you know it’s serious. And we don’t do it to just anybody of
course you have to fail medications. Then you have to have you know the
right kind of tremors and we have you go through a big evaluation,
you have to meet our surgeon. You have to undergo neuropsych testing. Usually we have you see a physical
therapist just so we can make sure that that tremor is bad enough to warrant
some of the risks involved with this. And anyways the side effects that can occur — I’m just going to show you a
different picture for interest. Are if you have bilateral stimulation, if you have weird cognitive effects we
can turn it off and then you’re better. The lesion that’s made when you put in
the little stimulator is very very small. That lesion itself is not
enough to fix your tremor. It might temporarily do that while there’s a
little swelling for the first few weeks post-op, but it won’t keep that tremor
suppressed and so that’s why we you know. But it’s a very tiny lesion in
comparison to some of the other lesions that are made in the other procedures. So if people are having cognitive side effects, which they can have we can turn the stimulator
off so it’s considered to be reversible. And because of the potential for cognitive
side effects that’s why we have people undergo neuropsych testing which is a
memory — a high level memory test. You don’t have to be perfect on
it but we want to have some idea. And the other thing that
can happen as a side effect that we see is some disrupted
speech, so slurred speech. And again if we turn the simulator
off the speech comes back to normal, so it’s a reversible thing but
kind of a pain in the neck. Because sometimes we have to program
people so their tremor is suppressed and then they can’t talk very well. And then we have a different
setting for when they need to talk a lot they might shake a little
more, but then their speech is better. You know that’s not our ideal and most
people we don’t we don’t have to do it, but it’s an option if you know that does occur. Everyone’s brain anatomy is different. And you know when we implant
this it is a surgery where you’re awake for a little while during it. Because we have to do a certain kind of testing
to make sure and verify we’re in the right spot. And then we look for side
effects which is a different way of verifying the spot that we’re in. So it’s not just oh we get rid of the tremor,
I mean we do some other things to make sure that well yeah we got rid of the tremor but
yeah well now you can’t talk or something. I mean there’s different types of testing
that we do in the OR to make sure we’re in the very best spot possible for you. And this is just a close-up of
what the electrodes look like. And there’s different you
know contacts they call them where we can program it different ways. We don’t really know why it works. You know maybe it’s like causing interference
and stuff like that, but we really don’t know. There’s also in deep brain stimulation surgery
over the years there’s been lots of improvement. The batteries are smaller and
give us more programming options. So for example if your tremor starts to
accommodate to the current settings we can mess around with it and get some new settings. There’s also under development
what they call closed loop systems. These are available in epilepsy
for epilepsy or seizures. And this is a system where
it kind of self programs. So there’s a component that kind of
detects the abnormal electrical activity. And based on that there’s you know this
computerized algorithm that occurs for it — for the system itself to set its own settings. So you know then we wouldn’t have to
do any programming which would be nice, let the machine do all the work you know. But that’s pretty — I think that’s
kind of far out in the future. But still things are you know moving
forward, the systems are getting smaller. The surgery is actually less brutal too. I mean the systems that they have for putting in
the electrodes and stuff are much more humane. Some of you may have seen some movies where they’re screwing these
things in your head and stuff. And you know now that doesn’t
occur, at least at ours — I mean we have a good surgeon where that doesn’t
— or he has a different system of doing it. So anyway so there’s lots
of progress being made. The thing we know about deep
brain stimulation is that it has long-lasting
benefits for the most part too. I mean there are some people
who will notice some worsening or you know it doesn’t work as well. But the majority of people I mean it’s been
around for you know since 1997, 20 years. And you know they’re getting tremor
benefit from their system so. Anyways it’s a therapy that’s here to sit stay. Unless if we can interfere with
somebody’s genes enough to prevent them from ever showing signs of tremor. So on that note I’d like to introduce —
so that’s my version of the DBS story. Anyways I have Chris hear, who’s
one of our patients and nice enough to tell you what he experienced with that. And again I’m not trying to
sell this to you in any way. It’s just you know one of the new techniques
that have given people a lot of benefit and we try to avoid surgery if at all possible. But you’ll see kind of why
Chris wanted to do it. So I have to give him the mic too. So I’m not getting fresh with him. You’ll see when he shows you his tremor
why I’m having to dress him up here. There you go thank you.>>Thank you. As Dr. Dent said my name is Chris. I may appear pretty young but I’ve
had a central tremor my whole life. So I’m 45 and I’ve had it for over 40 years. So as you can tell you know
it’s pretty noticeable with me. You know so what had happened is in 1996 when my
wife and I started to have a — start a family. I decided you know to check
into the tremors because — it wasn’t because they weren’t manageable. It wasn’t because they weren’t
— I couldn’t operate without it. It was the fact that I was concerned
for my kids, because I have five boys. So and so when I went and saw 96
they said yeah you do have a tremor, and they said well we can
start with medications. Well and they said if the medication don’t
work well you’ll go see a neurologist. And what they might be able to do is pinpoint where on my spinal cord it’s
affecting me and do injections. If that didn’t work then they
say well then there’s a surgery. Well back then they talked about taking
heated pokers and sticking it in my head. And it’s like well I wasn’t ready for that. You know I was 25 it’s like
you know yeah you know. And don’t worry about it if I say
or do anything that makes you laugh, go ahead and laugh because
I’ve had a thick skin. You know imagine trying to hold a note
card in speech class in high school, and sit there you know — you know it’s not fun. You know so and also you know if my wife’s
ever feeling down or something like that, I’ll turn off my stimulator and go hey honey. So I have a very thick skin
you know as you can tell. And my tremor it affects
my legs, it affects my — a little bit my speech, it’s probably a
little noticeable I can feel it right now. And definitely my hands you know. And for the first several years but you
know it’s been probably 2 1/2 years now. Because I saw Dr. Dent it was over a year
ago, that’s when the whole process started. I had the surgery in April, but it had
gotten to the point and it slowly progressed. And I remember vividly sitting on an
airplane because I used to travel a lot, and sitting next to a lady
who had the same thing and she goes: Yeah mine got worse about 30. And I’m sitting there oh
I hope it doesn’t hit 30. But when I got to be about 43 you
know 42 43 it started to get worse. And it continued to progress you know to where
— I’m a software engineer so things like typing on a computer with the left
hand going like that. Hit a key when your hand
shakes like that, it’s not fun. So I kept having to go to support often
and say hey I locked myself out again. So and it got to the point where
I — simple tasks affected me. I had to start shaving with two hands, I
had to start drinking liquid out of a cup. You know I was the only 40 some year old person
I know that had to drink out of a sippy cup, so you know open liquids even a little amount. And you know with and through the whole process
yeah I had to go see the physical therapist. What happened when I met with Dr. Lake he just
said yeah there you know your pretty much used up all the medications with the good side
effects, because I was in a unique situation. The most awesome thing is I never got
the benefit, I got all the side effects. So I got everything from you know
I can’t remember the one it was, but within about a half an hour my mind
went into a fog and I couldn’t think. And it’s like well I can’t take that
because you know I’ve got to actually — yeah it was the Topamax you know. You have to be able to think to do
my job although some people I work with would say yeah I bet. So I started to look back into it,
started to talk to my family doctor. She said well I’m going to refer you
to Dr. Dent so I met with Dr. Dent and she goes yeah it looks
like you have a central tremor, but there’s a whole series of tests. You’ve got to go see a physical therapist and yeah they do have you pour
water from one glass to another. And it’s a good thing they don’t give me a glass
of water up here because anything within 10 feet of me is getting a shower, so it’s that bad. So you know and they had me do things like — you know things like this it’s not you
know and I would do things to cope. You know I bartended for about
three or four years you know. Quick motions tended to — I could
get the tremor off guard so to speak. It got to a point where I found myself just
— and I didn’t realize it was doing this. You know signing my name I
anchored myself down on the table. You know it got to and eventually before I went through this whole process, you
know using a computer mouse. Imagine sitting at work in front of a
computer having to do this to use your mouse. Because just putting it on
the table I had to anchor it with my other hand and a lot of other things. But one advantage was I have a lot — with my
kids and nieces and nephews I can get my leg to shake forever without even thinking about it. So I just sit like that and just bounce the kid
on my leg and I’d just kind of do something else and they’re just kind of bouncing, having a
great time and I never had to worry about it. But so I met with Dr. Dent and we had tried a
couple medicines and it just wasn’t working. I was getting no benefit at all
so then we kind of proceeded. I went to see — I went through
the neurology department, they put me through it was
like a four-hour test. What they wanted to do is
get a cognitive baseline. And the problem with that and in
college all the testing this wiped me out worse than anything else. Because they really test
how well your brain works. Which against what other people
thought my brain was working just fine. So I went and then I had to go see
a physical therapist and they ran me through a bunch of tests you know. Because the main thing is I
was concerned because Dr. Dent and Dr. Lake had told me you know
you’re in your 40s right now. This can get worse in your 50s
and 60s and with how bad I am now, by the time I hit 60 I didn’t
want to be a disability. Because that’s what was going to happen,
I wouldn’t have been able to do anything. So I went through the whole thing
and I eventually met with Dr. Lake, and we talked about the pros and cons. And the other side of it is my wife, my family. Because I can tell you going through the process
it’s not something you can make on your own. Because even through the recovery
you’re going to need somebody there. But we would go to various events, my wife would
have to carry my tray because it was so bad. Because I got in trouble once for
trying to empty a bowl of grease. It’s a long story but I was in
the doghouse for several weeks because you know being a guy
it’s like I can do it myself. And then it’s like — it was
over the stove, over the floor, over the counter, over the refrigerator. And needless to say my wife
was not happy when she came into the room and I just said wasn’t me. So talking to Dr. Lake it was like he sat there and he goes well there’s
three procedures involved. And he said you know from the start
of the first surgery plan to be — plan six weeks of recovery,
and it does take six weeks. So the first surgery what they
do is they put bone anchors in. And what those are is basically screw anchors. Because what they’ll do is — and I was thinking
what probably would a lot of people say: okay this big halo, it’s not that way. Because when they through
the CAT scans, the MRI. What they’ll make is it’s a — use
a 3-D printer and they make a guide, and that just attaches on the screws. And the one thing I told him is like while
you’re at it can you just make me some handles, because my wife would find that really cool. So that surgery was really quick,
and that was an outpatient surgery. So you know really know — I was a little
groggy because they do put you under anesthesia. I’ve never had any major surgeries
before, but they put you under surgery. Under — they put you under so you go
to sleep, you wake up you got horns. So and then about a week later it came
back and that’s when they did the — that’s when they actually
implanted the electrodes. And for me it was about a 5 1/2
hour surgery, I was awake for it. And it really — they use with the MRI
imaging they could tell about where to put it. And also they had a representative
from Medtronic. It’s the company that makes the control
units, so if I get it wrong please correct me. The gentleman in back I believe
he was in surgery with me. Fred? Okay. So what they did is it’s about 5 1/2 hours
and they said yeah it is brain surgery, but first of all the brain has no feeling. And my wife was saying yeah other times too,
but so the brain has no feeling so it’s a local. And they and they you know
and what they told me is if you can handle getting your
teeth drilled it’s the same type of thing, the same type of noise. So they drill and then they inserted the
electrodes and they did one side at a time. And what they did is they ran various tests. They had me speak to them when they
felt they got it to a certain point. They took the settings up
to an uncomfortable level. And kind of the best way I
can relate to how it feels is if you’ve ever grabbed an electric
fence, that feeling that goes through your body — similar feeling. So and then they found a range
for my power, for my settings. And so I was awake for the whole
time and that’s when the real — that’s when my real it limited
me in what I could do. Because they wanted me to
take several walks a day. And basically for me walking
from here to the back wall in the first few days took everything I had. You know and normally I’m not a
person who likes to sit still. You know five kids chasing around
you don’t like to sit still. But it’s a very humbling experience when you
sit there and go: I can’t walk from here. I need help getting out of a chair to
start with, but you get a little better. I came back about 10 days later. And that’s when they put in the stimulator. So and after that I had to wait
a month until they turned it on. And for me having the essential tremors for as
long as I did, you know a month is no big deal. But nice thing is I didn’t have
to work, I could just relax. You know I wasn’t asked to do any chores
around the house, which is always a bonus. But really I did — I needed the full six weeks. Because you had to totally get your — You had to re-get your stamina
back, re-get your energy back. Because they are messing with your
brain, it is going to affect you. So they kind of — so I went in and I
met with Nancy and Nancy turned it on. And the cool thing was you know the
program was really easy to use you know. And I get a little bit of — you can
feel when the voltage level increases. But I went from that to this,
so for me it was huge. I was able to do things I’d
never been able to do before. Simple things like fill an ice cube tray, for
me I had never been able to do that before. So being able to do something as simple as that,
being able to go back and shave with one hand. Being able to do things with my left
hand you know threading a needle. Because Scouts we have to you know — we
have to know how to sew patches and so forth. But just threading a needle, simple things. You know using my mouse, entering
a password, you know typing. It wasn’t — I didn’t have to worry about it,
something like holding a pen to sign my name. Real simple things that you just don’t realize
what you were missing until you experience it. So and like I said it is familial. My mom has a central tremor, not
as bad as I had it or have it. My older brother has it and my older
sister but not near as bad as I do. My younger brother has it
but not — he’s got it — him and I always had sitting
there: Who has the worst tremor? You know and like I said I have a thick skin
because can you imagine being a kid growing up with a tremor and shaking all the time? The things people say to you, you know. You know the biggest one was we’d sit in the
lunchroom and somebody’d toss me a carton of milk and say here make
me a milkshake you know. For me it’s like you know
okay, okay smart alec you know. But I you know and I could come back with
comebacks like: you know I’ll hit you so many times in half a second
you’ll think you’re surrounded. So but really it’s been a
big improvement you know. My wife has to get re-used to not
having to do everything for me. So and like I said the only one of my
five kids that notices my 13-year-old. He doesn’t have an near as bad
as I do but it is noticeable. But he didn’t have it as bad as I am. So it comes a time that we’re going
to have a talk about it you know. And the one nice thing about the
DBS thing is it is temporary. If they do find something that
works better down the road, they can always remove the
wires everything heals. And –>>So was it worth it?>>Absolutely. [ Applause ]>>So if there’s any questions for anybody
either one of us, feel free now is the time. And just note that to access the — someone
was asking me I hope it’s big enough on this. How do you access the moving
forward website to watch the movie? I have the link listed up
there, and that will be up.>>Because I know a couple months ago Dr.
Lake did a presentation on deep — on DBS.>>But if you even search www.uwhealth.org
and put in moving forward it will come up. I was trying all different ways to try to
access it because I can’t remember websites.>>And I know everybody’s
wondering if I had Botox then — no. This is turtle wax. No it’s not from the surgery
I lost my hair with kids.>>Anyways — yeah?>>I know loss of hair is
hereditary, it comes from having kids?>>It’s also perfect heads lose hair.>>I doubt you’ll know the
answer to this question but if the Medtronic records I’m curious
what the infection rate is from DBS?>>So the question was what is the infection
rate of the DBS implants over a lifetime? 4%. [ Inaudible Question ] I should take this down there. Fred I’m going to have you repeat that.>>So the 4% number comes from
all the research that’s been done. So it’s kind of a compilation of all
the different research that’s out there. And those vary anywhere from 10 years
to you know down to three months. So it’s — [ Inaudible Question ] Yeah it tends to just be usually
most of the problem is usually in the wire or the connections site. Because it’s you know it’s platinum
iridium product, it’s a metal. So there can — you know there’s a chance
of metal fatigue of that wearing over time. It tends to be around 1%. [ Inaudible Question ] Yeah I do. I have it here. Yeah.>>The question was did he have any of
the control device that’s in the chest. And really mine is about this big, give or
take it might be a little smaller that this. But it controls and I had
the bilateral surgery done. And the neurostimulator that’s implanted in my
chest is not — it’s not a rechargeable battery. So I’m going to have to get it replaced Dr. Lake
said because I’m able to shut it off at night and I can conserve the battery it
could be upwards of seven years. So you know and that’s an outpatient surgery. He’s been — he had his hand up a long time ago.>>Is there a plus or a minus
between taking multiple drugs? For example taking Propranolol, and Gabapentin and I’ll pronounce it topiramate
— that’s what it looks like to me. All three of those?>>It depends on the person, so we
try to just treat with one medication. But there’s some people who will notice
like a little bit of benefit with this one, we’ll just say like 20% maybe
10% with another one. And so sometimes we can add them
together if they tolerate them. Sometimes the risk of side effects goes
up when you have multiple medications. But we’ll try just one and keep
track well did it do anything or not? At least this is what I do. And if it did have a little
effect we might you know and another one had a little effect we
might try both of them together to see. But usually you start out one at
a time to see what it does for you as well as against you side effect wise. [ Inaudible Question ] Yeah no and some people might feel like that,
but other people it’s really variable yeah. Any other questions? Yes?>>How much does the surgery cost?>>Oh gosh it depends. You know they put numbers out there and
Medicare will pay for it’s percent depending on your insurance, and the
other insurance picks it up. So I don’t know the actual cost because
those are false numbers usually, you know they wheel and deal. But usually insurance coverage is
not an issue for this indication. There’s certain DBS indications where
we can’t do it because it is an issue. But for essential tremor I don’t think we’ve
ever had anybody’s insurance like say no. And yeah what is yours?>>Mine except for my deductible
was entirely covered. And it’s not a $100 surgery so
you know mine was quite expensive. But the benefits I got out of it
I’d have paid double or triple it. But the nice thing about having my
insurance is the insurance covered everything but my deductible. So and one thing after they turned
it on actually it was weird, that I actually had to relearn a couple things. One thing is I developed a hitch
in my step, where I’d come down and the right leg would just
go [stomp] right at the end. So I had to relearn how to walk a little bit. The other part of it is my
handwriting had got extremely small. You know to the point where because my
body had been compensating for the tremor that suddenly the tremor’s gone and
my handwriting got really small. It’s like I couldn’t even work. I couldn’t even read my own
writing at that point. So I relearned and it’s back to where it was so.>>So if you’re taking some medications for
the tremor and the tremor’s gotten worse, if your GP doctor is dealing with it at
what point do you go to the specialist?>>Yeah and that will depend
on the comfort level of the GP. Some of them are comfortable treating
tremors and you know some won’t be. But if you’re feeling like they’re
kind of just slapping medicines at you or something you know certainly
you can request being seen. Sometimes you know we see people from
all over the state northern Illinois, even I have people from all
over the place come in. And if they’re from a distance
we might do a consult and then tell the local people
like oh yeah did you try this? And here’s how to start the medicine you
know there’s no magic to it you know. And so we you know consult with them
kind of long-distance too to see. Because the medicines can be very hard to
tolerate if they’re not titrated properly. You know and a lot of times that’s the error
like when people come from me they’ll be like oh yeah we tried everything
but you know and then I look at the details and it’s like well no. You either didn’t get high enough on a does or they increased you too fast
so you couldn’t tolerate it. So there’s a lot of monkeying
around with the medicines. You know and it’s kind of clinical
experience and you know different — usually general practitioners
if you want to see a specialist or have a second opinion you know they’re
not going to be generally upset about that. You know just like if you want to come and see
me for a second opinion, just want to come once. I mean and have the other guy manage
things, you know we’re here to help you. You know so there shouldn’t be a big ego thing. Right. Yep they have neurologists at Dean and right now they don’t have
a movement disorder specialist, but if the Dean neurologists aren’t able to manage it they’ll send
them over to UW for a consult.>>And you mentioned was it
essentialtremors.org for website?>>Right you can just put
essential tremor in like Google and the International Essential
Tremor Foundation will come up. And they’re just — they have good information. You know there’s always –>>International Essential Tremor?>>Right. IET I’ve seen that I don’t know. Yeah there you go. Yes?>>You prefer, or why do they
sometimes use beta blockers versus not?>>Yeah well the beta blockers
are often easier to tolerate and for a mild tremor it’s usually enough. And some people will have
hypertension too so it helps with that. But it’s usually just you know that will
is the least — the best tolerated overall. But oftentimes eventually tremors will get too
severe and they won’t respond to that anymore. Yeah yeah right yeah. I mean I guess some people will go if there
is a contraindication to a beta blocker, there’s certain health issues you can
have where they won’t want to use it. You know so –>>Mine wasn’t mild.>>No [giggles] Did you want to say something?>>Yeah.>>Do you often use more than
one medication at a time?>>I try not to but in certain
cases that can occur. You know depending if you have a
little bit of a response to one. And a little bit of a response to another we
might try both of them together eventually so. [ Inaudible Question ] Yeah right. So I don’t you know exercise has
been shown for numerous things to keep your brain healthy overall. There’s lots of different mechanisms. You know diet — people have a
lot of different beliefs in diet, and people will find different
things that will help them for diet. I’ve — you know some people try
a gluten-free diet for a while. Seeing as gluten-free stuff
is now more readily available and they’ll notice improvement in tremors. Some people will be on a variety of diets,
like a vegan diet or raw vegan diet. They can maintain them for awhile and they’ll
notice their tremors improving as well. I’ve had numerous people you
know do that sort of thing. We don’t know exactly the mechanism of why. But again like even the medication
it’s highly individual. Is there a certain diet that everyone
should be on to keep their brain healthy? Well you know you’re going you know like the
well balanced you know food pyramid types of diets that we’ve heard about you know. There’s not necessarily some of
food that’s particularly toxic for tremors that you have to avoid. Other than like caffeine some people will notice
that their tremors are worse with caffeine. And you know other caffeine containing
like beverages or chocolate or something. But it will be very individual and so. I don’t know if that really
answered the question well. Did you find diet helpful or anything?>>As you can tell I’m a well fed person. So but I did exercise and from a recovery
standpoint, yeah it did help recover — it helped with my recovery faster. But one — I know there were
a couple of other questions. But one thing I can say and I
said this a couple months ago when we had a patient panel for the DBS. One thing I notice about the whole UW
system, when I went from one department to the next it was always the — When I went
from Dr. Dent to the physical therapist, to the neurology department to see Dr.
Lake to talk to him about the surgery. Each department had nothing but the highest
respect and regard for the other department. And it was refreshing and it really put me
at ease to say yes this was the right thing for me, it was the right way to go. I’m in the best hands. And the other thing is the whole
process before the surgery takes about at least six months I’d say. So you know it gives you plenty of time
to come up with questions, concerns. And if it comes to the point where
you just say it’s not for me, nobody will say ill will towards you if you
decide at some point: Hey I’m not ready. Because when I talked to Nancy about
this a couple of different times, the person has to be ready
for it, has to be prepared. And it just happened to be I was
at a point where yeah it’s time.>>Yes way in back?>>Way in back. [ Inaudible Question ]>>Not necessarily no. Nope I’ve had people where they — you know a little bit of you know
that — know that it doesn’t. [ Inaudible Question ] Yeah. Not necessarily because most of the
side effects are similar for all of them. So it’s the same as if you’re taking a high dose of you know side effect wise it’s often
the same as if you’re taking a high dose. And often times but you know by that point too,
the tremors are such that they’re not going to respond particularly well
you know at a very low dose. So you won’t get like an additive
effect do you know what I mean? So like if it’s you know if it’s
only responding 10 or 20% you know, I mean it’s not that directly additive so. You know but it’s something we fool around
with, but I don’t think that being on low doses of multiple medications necessarily
slows down any progression or anything like that you know so. Yeah I mean and people will be
different, I mean there’s not like one medication recipe that’s
going to work for everybody. And you have to kind of fool around with it. So you know what works for one
person won’t work for somebody else.

Leave a Reply

Your email address will not be published. Required fields are marked *