Experts Review Surgical Treatments for Essential Tremor

We are fortunate that ET experts recently reviewed surgical treatments for ET to write this paper entitled Surgical Treatments for Essential Tremor. They include DBS (deep brain stimulation), FUS (focused ultrasound surgery/ablation), SRS (stereotactic radiosurgery), and radiofrequency ablation treatment. The authors detail when surgical treatment is an option (when tremor symptoms are severe) plus they cover complications and outcomes, including limited effectiveness and possible need for repeat or additional surgery. Details are also included for those with voice and head tremor. Patients may have tremors bilaterally, that is on both sides of their body, however certain surgeries are found to have better outcomes if the procedure is done unilaterally, meaning the outcome affects only one side and is therefore a partial solution.

For a better understanding of what is happening in the brain of someone with ET, read the paper’s introduction. It explains how the tremor signals travel along a communication loop in the brain known as the corticobulbocerebellothalamocortical loop. It also tells how the surgeries for ET target the ventralis intermedius (Vim) or the posterior subthalamic area (PSA) right below the Vim, and surgical stimulation in these spots disrupts the signals in the loop, lessening tremor.  If we can locate a visual image of this loop we will post it! The authors’ key issues, conclusions and expert commentary are worth reading especially for those interested in surgical options with supporting data. Overall, the authors, Elble, Shih and Cozzens comment on the rapid improvements being made in surgical treatments.

This paper was supported in part by a grant from the Illinois-Eastern Iowa District Kiwanis Neuroscience Foundation.

Surgical treatments for essential tremor

Research Study Focus on Improving Treatment of ET with the Use of Mobile Devices

Five months ago in October New Touch Digital, LLC, a software company with a vision for improving Essential Tremor treatment through technology, came to several Maryland ET support groups to express their research study ideas. By collecting measurable data about ET symptoms on tablets or computer devices, information on a patient’s symptoms could be conveyed to the patient’s neurologist.  This data gathering process is understandably important since ET symptoms are not always readily apparent at a short doctor’s office visit. See New Touch Digital’s easy-to-understand description of the research by clicking here.  They are about to embark on their study in the D.C. Metro area and plan to select a limited number of participants, therefore the participation inclusion criteria for the study is given below.

ET inclusion criteria and time line

 

 

Quality Of Life Research

While anecdotally we may know the quality of our daily lives are affected by our Essential Tremor, what does the clinical research show? Here are links to a few past study articles on just that:

Quality of Life in Essential Tremor Questionnaire (QUEST): Development and initial validation

The psychosocial burden of essential tremor in an outpatient- and a community-based cohort.

The authors of the first study above indicate their goal of developing sound, reliable measures of quality of life for ET patients. Yay!

Both articles have results of study questionnaires where participants self- reported on their symptoms. In the first study participants reported on the negative physical impact of their tremor, the psychological impact, and tremors’ impact on communications, work/finance, and hobbies/leisure. Factors used in the second study were depression, personality traits, psychiatric components, coping strategies and a quality of life health survey.

It is commendable in the first study that the data are specific to the body location of ET symptoms, meaning that voice, head, arm and leg tremor results are included, not just hand tremor.  As would be expected of those with voice tremor, the data show the severe impact their condition has on communications. And in the second article, the study authors make note of interesting results that show significant, negative psychosocial impact of ET that is not closely associated with or dependent on the severity of the tremor. This means that even if physical tremor symptoms are not considered severe, they can still have a hefty, negative psychosocial impact.

Overall it appears self-reported questionnaires are developing into something meaningful. The clinical researchers or study authors are hopefully connecting some dots, having learned about the physical, social and neuropsychological components of this condition, and knowing more clearly now how everyday life is impacted for the ET population. Click on the links for more information about the individual studies (but be forewarned it is not easy reading).

UMBC Accessibility Research Study

We received the following information from the University of Maryland, Baltimore County’s Human-Centered Computing program about their need for participants for a short survey plus an interview:

In this project, we are designing and evaluating adaptive systems to support the use of the computer mouse and other pointing devices when navigating the Web. We are looking for 15-25 individuals who are 65 years or older and who are experiencing permanent or intermittent pointing problems due to hand tremors, arthritis, or other conditions that impact fine motor hand movement. The participants will be interviewed about their computer use. They will also use a computer system that we are developing called PINATA and provide feedback about their experience.

To learn more about the study, view the attached flyer.
To learn more about PINATA, click here.

NIH ET Trial with Research Doctor from Australia

I have participated in many ET trials at the National Institute of Health (NIH) located in Bethesda, Md. – just outside Washington. It is an outstanding organization whose work benefits the whole world. As such, NIH brings doctors from all over the world to work there.

I am now participating in a new trial at NIH conducted by Dr. Dietrich Haubenberger. He is great and from Vienna. For this trial, he is being assisted by Dr. Alex Fois of the University of Sydney. My ET is hereditary. My mother had it as did her mother. They were Australian (Perth). I therefore have unknown relatives in Australia who have ET.

We at HopeNET want to be of help to anyone who has ET regardless of where they are in the world or their circumstances. It was a real pleasure spending time with Dr. Fois.

— Peter Muller

Dr Alessandro Fois BSc (Adv; Hons I, Medal) BM BCh (Oxon) MRCP FRACP
Clinical Associate Lecturer, University of Sydney
Movement Disorders Fellow
Department of Neurology – A/B Block Level 1 Westmead Hospital

What does it mean to have a disorder like ET?

What does it “mean” to have a disorder like ET? It’s not a disease. As you and I know it’s probably more like an umbrella term covering a family of different problems all united by one primary symptom – tremor. How do we gain more knowledge about ET and our own conditions? Having a visible tremor is a “sign” to others that there is something wrong with our brains. What this means to others has a direct bearing on what it means to us. And it’s not easy to communicate what it’s like to have ET to others, including health professionals. So how do we know what is important to communicate?

New research comes out, and it’s hard not to personalize it and assume that whatever it says applies to me or to be upset that it clearly doesn’t apply to me! There are many studies of people with ET that show an inflated rate of this or that among people with ET. As an epidemiologist, let me tell you the main problem I have with some of these studies: many of these studies don’t bother to provide or consider the base rate—this is the rate of a particular disorder in the general population, and it helps one understand whether a finding means anything in particular.

Let’s take depression for instance. A study tells you that X% of those with ET also have depression. Gosh, you might say, this may mean my ET makes it more likely that I’ll be depressed. (Well if you kept missing your mouth when you tried to eat peas or apply lipstick, you might also have some general distress towards your functioning – but hey, that’s distress, not depression, which is a clinical diagnosis with many symptoms over at least a two-week time span). What the researchers often don’t tell you is whether this rate is more or less than in the population at large. In fact, depression is a prevalent problem in the general population! Here’s where I have to get a little specific. Again, depression requires a group of symptoms that occurred for at least a two-week period. So if we are asking people about the last two weeks, all we can find is if they are currently in a two-week period of depression. If they started coming out of it a week ago, we won’t accurately measure the fact that in the last 30 days they have been depressed. If we measure the last 30 days only, we won’t know if they had a depressive episode last month that may have resolved enough – not completely, but enough – for them not to reach diagnostic criteria. Finally, if we measure lifetime, we might find out if they have EVER had depression. This ever category is always the biggest. It counts the prevalence of past-30-day (commonly called current) depression and it counts any lifetime episode. Measured this way, one in five people in the U.S. has ever been depressed. So if a study measures the association of depression, lifetime, with ANYTHING, it is very likely to be positive, to look elevated, if you don’t account for the base rate of the disorder in the population. I’m only using depression as an example. The bottom line is that we have to remember when we read the literature that just because someone finds that something is associated with ET doesn’t necessarily mean much. It doesn’t mean with our type of ET we are at higher risk for another disorder or disease.

So what do we need to be communicating to health professionals and, in turn, to researchers? What don’t they know that prevents them from being able to help us with? What about that my hand tremor is only a small part of what my ET is and how it affects me. Lately when I’m laying down to sleep, my neck and head tremor bother me and keep me from falling asleep. I try to get in a position that will lessen it, but I find it difficult to do. I’m still taking less propranolol than I could; maybe it would go away if I took more, or really cut out caffeine from my diet. I also realize that for years I’ve been clenching my jaws to cut down on jaw tremor. Not good for the enamel on my teeth or for my joint! Here’s another weird one – maybe you can relate, maybe not. When someone picks a table that will cause people to sit really close together, or in theaters or other places where the chairs are really small, and some of the people just have to spread their legs and take up lots of space, I’ll be really uncomfortable. Why? Because I’ll be almost forced to activate my muscles to hold my legs closely together, and that will lead to tremor, and then I’ll be really uncomfortable; and honestly it’s hard for me to even communicate what I’m talking about to people who don’t have a tremor. Actually I think the list of what I don’t share about my ET is huge. I didn’t realize it until I started writing this! And that’s just about different tremors, probably not the most important thing about ET to me.

That is the feeling I get when I forget to take my medicine. I feel off balance, like something inside knows something isn’t quite right. And I don’t really see that reflected in the literature. What is in the literature may not at all reflect my ET. It might not reflect yours. That puts an additional burden on each of us to communicate how ET affects us for our own sake, and to build the knowledge base about how ET affects people. I’m hoping we’ll make progress in understanding and treating what we now call ET. It’s going to take new research – but it’s also going to take persons with ET speaking up about what matters most.

——-
Dr. Catherine Striley is a professor of epidemiology at the University of Florida, Gainesville and has had ET since her early childhood. She therefore has the condition while being a member of the medical community.

Act Now and Give Your Public Comment on Focused Ultrasound Procedure

If you suffer from Essential Tremor and are interested in receiving the non-invasive procedure Magnetic Resonance guided Focused Ultrasound (MRgFUS)……

YOU NEED TO ACT NOW!!!

National Government Services (NGS Medicare), the Local Medicare Contractor that oversees benefit administration for Medicare beneficiaries residing in the following states: Connecticut, Illinois, Maine, Massachusetts, Minnesota, New Hampshire, New York, Rhode Island, Vermont, and Wisconsin recently published a “DRAFT” Local Coverage Determination (LCD) on the topic of MRgFUS for essential tremor. While NGS feels the technology is “promising”, they came to the conclusion that they will NOT consider this procedure to be a covered benefit. This is very disheartening as MANY people who suffer from tremor could benefit from this procedure.

NGS Medicare is allowing public comments on the subject through November 30, 2017. Without significant written comments by the public, the draft policy will likely be finalized in its current unfavorable decision.

If you would like to submit comments, encouraging NGS Medicare to provide coverage for its Medicare beneficiaries, you can do so by sending them electronically. Please reference the following in your subject line: Re: Magnetic Resonance Image Guided High Intensity Focused Ultrasound (MRgFUS) for Essential Tremor: DL37421 

The email address for submitting comments is: PARTBLCDCOMMENTS@anthem.com

Act Now and Give Your Public Comment on Focused Ultrasound Procedure

If you suffer from Essential Tremor and are interested in receiving the non-invasive procedure Magnetic Resonance guided Focused Ultrasound (MRgFUS)……

YOU NEED TO ACT NOW!!!

National Government Services (NGS Medicare), the Local Medicare Contractor that oversees benefit administration for Medicare beneficiaries residing in the following states: Connecticut, Illinois, Maine, Massachusetts, Minnesota, New Hampshire, New York, Rhode Island, Vermont, and Wisconsin recently published a “DRAFT” Local Coverage Determination (LCD) on the topic of MRgFUS for essential tremor. While NGS feels the technology is “promising”, they came to the conclusion that they will NOT consider this procedure to be a covered benefit. This is very disheartening as MANY people who suffer from tremor could benefit from this procedure.

NGS Medicare is allowing public comments on the subject through November 30, 2017. Without significant written comments by the public, the draft policy will likely be finalized in its current unfavorable decision.

If you would like to submit comments, encouraging NGS Medicare to provide coverage for its Medicare beneficiaries, you can do so by sending them electronically. Please reference the following in your subject line: Re: Magnetic Resonance Image Guided High Intensity Focused Ultrasound (MRgFUS) for Essential Tremor: DL37421 

The email address for submitting comments is: PARTBLCDCOMMENTS@anthem.com