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

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)……


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:

Proposed Payment Rates for ET Treatment Too Low?

MRI-guided focused ultrasound (MRgFUS) for essential tremor became a method of treatment in July of 2016 when the FDA approved the procedure whereby thermal imaging is used to target and lesion brain tissue while keeping the skull intact. Since then it has progressed to the insurance coverage determination process where coverage rates are established for providers of the procedure and its technologies. Until payment rates are completely established, people who want it will pay out-of-pocket to the tune of about $25K to have the procedure.

There was an opportunity recently for public comment on the proposed coverage rule for 2018, and Peter Muller of HopeNET, who himself underwent the procedure when FDA approved it last year, submitted the following letter to CMS expressing his concern that if payment rates to hospital providers are too low the hospitals may choose not to offer to this care option, and those with ET who would benefit may have limited access to treatment.

CMS letter FUS 2018



Maryland Essential Tremor Support Group Welcomed Dr. Paul Fishman to Meeting

 The Columbia, Maryland ET support group was pleased to welcome Dr. Paul Fishman on 2/3/17 as a guest speaker for the monthly meeting at The Wellness Center. Dr. Fishman performs both Deep Brain Stimulation (DBS) surgery and the newer MR-guided Focused Ultrasound Surgery (FUS) on ET patients.

We were fortunate to have him visit and share his informative presentation with us.

Click here for presentation notes.

Present-Day Essential Tremor Medical Research Outlined:

Experts Reach Consensus on Research Priorities

In the quest to advance Essential Tremor (ET) research that could lead to better understanding and development of successful treatments, medical professionals in the movement disorder field collaborated on a white paper published in December, 2016 entitled “Knowledge Gaps and Research Recommendations for Essential Tremor.”

ET_poster (1)The paper developed out of a workshop these professionals attended in May 2015 and their subsequent brainstorming discussions. The non-profit ET patient advocacy organization HopeNET, which has for several years sought to connect the ET patient community to the medical research community, proudly played a role in the occurrence of the workshop, which was hosted by the National Institutes of Neurological Disease and Stroke (NINDS) in Bethesda, Maryland, USA, and included over 60 participants.

The resulting paper is a valuable guideline for the future. It is certain to be of interest to the ET community who will be glad to learn that medical professionals are indeed working to further knowledge of this movement disorder! The summary below serves as a layperson’s general overview of the detailed paper to convey information in terms that are more understandable to a general audience. Science-curious readers can pursue the paper in full through ScienceDirect here [1].

The causes of ET are poorly understood. Despite widespread occurrence, no medications have been created specifically to treat it. The goals of making ET less elusive and coordinating research efforts were driving forces behind the workshop discussions. One big challenge is limited knowledge about both the genetics and the neural pathway mechanisms involved in ET. Another has to do with inconsistencies in making an ET diagnosis. The fact that ET has multiple causes makes any simple definition of it inadequate.

Clinical research methods and approaches have been inconsistent. And without standardized procedures in place, analyses and findings disagree. The authors do an excellent job of taking an in-depth look at what they do and do not know about ET. Perhaps most importantly they take it a step further: they come to a consensus on recommendations for research in these areas: phenomenology and phenotypes, therapies/ clinical trials, physiology, pathology and genetics.

The authors recall the classic ET definition given roughly 20 years ago, as set forth by the International Parkinson and Movement Disorder Society (MDS). They mention that since that time there has been speculation about other characteristics that may need to be added to the definition such as, modest changes or abnormalities in these areas: cerebellar [2], cognitive [3] and hearing function [4, 5], plus dystonia [6].

The authors discuss how it is common for ET patients to present with new symptoms that do not fit in to the existing ET definition, changes that call into question the validity of the diagnosis. ET also appears to share overlapping features with other conditions [7]. New symptoms and overlapping features have encumbered clinicians, but they still believe a revised, workable definition is necessary clinically for the purpose of making inroads and facilitating important collaborative research.

They agree on new criteria and propose that ET going forward be considered as an isolated tremor “syndrome” rather than a single disease or condition since it has been established that ET has multiple causes.

The following are the authors’ recommended diagnostic criteria for defining ET as an “isolated tremor syndrome” in an individual:

  • Bi-brachial action tremor (postural or kinetic)
  • Duration of 3 years or more
  • With or without head tremor or tremor in other locations
  • No other diagnostic neurologic signs (e.g. overt dystonia or parkinsonism)
  • No identifiable endogenous (e.g., autoimmune disease) or exogenous (e.g., toxins) disturbances that could cause tremor
  • Difficulty with tandem walking is permissible, but no abnormality of gait [8]

Bi-brachial pertains to the 2 arms. Postural refers to holding a limb against gravity as in for example, holding arms out in front of the body, and kinetic refers to tremor that occurs when in action. The authors acknowledge that there are isolated tremors that do not meet the proposed ET criteria. They make clear this clinical ET definition is not meant as a detriment to continued research on other isolated tremors.

Given the absence of an identified ET gene or an identified biomarker to help with a diagnosis, emphasis is placed by the authors on gathering and classifying symptoms as fully as possible, with quality data collection and standardization efforts in place, including use of common data elements (CDEs). How is tremor measured in a clinical setting? Various tremor rating scales are used and the authors are calling for their evaluation. The rating scales include clinical assessment scales, patient-reported ratings/scales, and motion transducers, which are those devices that measure tremor amplitude or severity. Recommendations are made for development of a tremor monitor, among other technological devices. It is however pointed out that gaining insight from measuring the tremor is not as conclusive as it would seem since tremor amplitude or the severity of the oscillation can fluctuate at various times and the significance of those fluctuations is not known.

Regarding therapies or treatments for ET, the common drugs presently used were created to treat other conditions like epilepsy, high blood pressure and anxiety and were repurposed for ET when found to reduce tremor in some people. The paper explains briefly how these agents are thought to work at the cellular level. Besides the commonly used beta-blockers, anti-epilepsy drugs and benzodiazepines, clinical research has established ethanol, aka alcohol, as effective in its ability to reduce tremor amplitude for many people. Its effectiveness has led to studies in past years that isolate ethanol-related molecules such as sodium oxybate, 1-Octanol and octanoic acid, and these may turn into possible future treatments. They also seek to better understand how certain surgical interventions have met some success in reducing tremor: deep brain stimulation (DBS) and magnetic resonance focused ultrasound, both of which target and lesion the ventral intermediate nucleus (VIM) portion of the thalamus in the brain.

At the physiological level, researchers have identified a particular central nervous system circuit they think may be responsible for tremor oscillation in ET called the corticobulbocerebellothalamocortical circuit, and they are calling for investigation of it.

Genetics research findings make clear to the authors that the path to increased ET knowledge may be found in focusing on large patient cohort studies worldwide in order to make certain associations. Background is given on some important studies that have been done such as the Icelandic genome-wide association study (GWAS) that suggests the gene LINGO1 has possible associations to ET [9]. Common data elements, collection and storage of DNA bio-samples and coordinated multinational efforts are strongly encouraged.

The paper builds an awareness of scientific research being done in the ET field. The workshop provided an opportunity for experts to discuss present-day ET challenges. The authors discovered shared goals that ultimately revolve around deepening knowledge and making new treatments available, improving data, standardizing approaches, and evaluating therapies. It is a guideline for future research projects that, if adopted by researchers, could see momentum build in the direction of better outcomes for ET.

Lisa Gannon





[1] F. Hopfner, D. Haubenberger, W.R. Galpern, K. Gwinn, A. Van’t Veer, S. White, …, G. Deuschl. Knowledge gaps and research recommendations for essential tremor. Parkinsonism and Related Disorders 33 (2016) 27-35. Retrieved from

[2] J. Benito-Leon, A. Labiano-Fontcuberta, Linking essential tremor to the cerebellum: clinical evidence, Cerebellum 15(3)(2016) 253-262.

[3] E.D. Louis, J. Benito-Leon, S. Vega-Quiroga, F. Bermejo-Pareja, Neurological Disorders in Central Spain Study, Faster rate of cognitive decline in essential tremor cases than controls: a prospective study, Eur. J. Neurol. 17(10)(2010) 1291-1297]

[4, 5] W. G. Ondo, L. Sutton, K. Dat Vuong, D. Lai, J. Jankovic, Hearing impairment in essential tremor, Neurology 61 (8)(2003) 1093-1097.

Benito-Leon, E.D. Louis, F. Bermejo-Parmejo-Pareja, Neurological Disorders in Central Spain Study, Reported hearing impairment in essential tremor: a population based case-control study, Neuroepidemiology 29(3—4)(2007) 213-217.

[6] J. Jankovic. Essential tremor: a heterogenous disorder, Mov. Disord. 17(4)(2002) 638-644.

[7] R.J. Elble, What is essential tremor? Curr. Neurol. Neurosci. Rep. 13(6)(2013) 353.

[8] F. Hopfner, et al. Knowledge gaps and research recommendations for essential tremor. Parkinsonism and Related Disorders 33 (2016) 27-35,

[9] H. Stefansson, S. Steinberg, H. Petursson, O. Gustafsson, I.H. Gudjonsdottir, G.A. Jonsdottir, …, K. Stefansson. Variant in the sequence of the LINGO1 gene confers risk of essential tremor. Nat. Genet. 41 (3)(2009) 277–279.

Dr. Dietrich Haubenberger of NINDS/NIH Gives Presentation On ET Outlook

title-page-et2016-presentationWhen we founded HopeNET 5 years ago, we felt that the thing that the ET community needed most at that time was HOPE – hence the name. In the meantime, we have strived hard to bring some hope to all with ET. Accordingly, HopeNET played a key role in having the ET conference at NIH in May 2015. Since that conference, there has been a big increase on the part of industry in developing new treatments for ET. Dr. Dietrich Haubenberger of NIH is probably in the best position to know what is going on with ET. He came to the Falls Church, Virginia ET support group on October 14th and made the attached presentation, Essential Tremor 2016: A look into the pipeline. There has never been a better time than right now for hope – for all of us in the ET community.

— Peter

Pictures from the 5th International Symposium on Focused Ultrasound

Ferre GrishamReidUnkPeter GrishamPeterReid

August 31, 2016, Bethesda, Maryland – These pictures show HopeNET director Peter Muller a week after his focused ultrasound procedure attending the annual forum on focused ultrasound advances. Seen, from left-to-right, Peter with Maurice Ferré, MD, CEO of INSIGHTEC, the medical device company behind the magnetic resonance-guided focused ultrasound (MRgFUS) technology; and with symposium keynote speakers John Grisham, bestselling author who recently penned The Tumor, a medical fiction story about focused ultrasound, and Chip Reid, CBS reporter and national correspondent who is frequently on CBS This Morning.

Essential Tremor Symposium at Holy Cross Hospital

Shown is Peter Muller beginning the joint Essential Tremor support group meeting at Holy Cross Hospital on June 6, 2015.
Shown is Peter Muller beginning the joint Essential Tremor support group meeting at Holy Cross Hospital on June 6, 2015.*

The June 6th Essential Tremor support group meeting at Holy Cross Hospital in Silver Spring, MD brought together close to 50 members of area Essential Tremor support groups from places like Silver Spring and Columbia, Maryland and Loudoun County and Falls Church, Virginia. There were two speakers preceded by remarks by Peter Muller from HopeNet. Muller informed the audience about what happened last month at a conference HopeNet worked to arrange, held at the National Institute of Neurological Disorders and Stroke (NINDS), a part of NIH. Forty neurologists and ET researchers attended the conference. What they agreed on is that treatment for ET is not possible if they do not know what the condition is. ET presents differently in each person, with varying symptoms such as hand tremors, head tremors, voice tremors, etc., and there can be overlap with other conditions such as Dystonia. These experts decided it would be beneficial to use hand tremors as the focal point to pinpoint what ET is, which suggests there will be upcoming studies.

Moving on, the support group audience was fortunate to hear from Dr. Maguire-Zeiss of Georgetown University’s Department of Neurology who gave a brief overview of the mechanisms in the brain thought to be involved in ET such as the cerebellum, motor cortex and thalamus. There is a question about the role the inferior olive plays as well. Maguire-Zeiss focused on neurons and likened the movement of neurons in the brain to an (electric) circuit and pointed out that if there is a “hiccup in the loop,” that can lead to more body movement (as seen in ET) or less body movement (as seen in Parkinson’s Disease).

Another guest speaker was Dr. T. Sean Vasaitis, Professor of Pharmaceutical Sciences at University of MD, Eastern Shore, who has ET himself and is a practitioner and instructor of the Chen style of Tai Chi. Dr. Vasaitis spoke about body control and elaborated on the benefits of Tai Chi such as reducing stress, releasing tension, improved calm, sleep quality and other cognitive functions. He is exploring the idea of a study on the effects Tai Chi can have on ET patients and speculated that starting out there would be a suggested practice of Tai Chi 2-3 times per week.

HopeNet organized this support group meeting and continues to work toward helping people with ET. Another similar meeting of these support groups is likely to be planned for the fall season, and will again be open to other interested individuals.

Please check for upcoming schedule and registration information.

Lisa Gannon
Silver Spring Support Group Member



Shaking On Capitol Hill

April 2, 2014 — A handful of members from the Essential Tremor Support Group that meets monthly at Leisure World in Silver Spring made a trip to Capitol Hill to meet with Congressman Chris Van Hollen’s Legislative Assistant for Healthcare, Erika Appel, to discuss concerns over quality of life for people with Essential Tremor, a neurological condition.

E.T. can present with hand tremors, voice tremors, loss of voice, head tremors, and leg tremors. Prudy of Ashburn attended with her sister, Sara, of Derwood, in order to speak for Sara who cannot talk because of the condition. Sara began having a wavering voice years ago and as the condition progressed she lost her voice completely and faces not only social isolation but real danger from not being able to communicate. Another attendee was Thom who came with his wife Mary so she could speak to how it is for a family member supporting the person with E.T. Thom had Deep Brain Stimulation, brain surgery that involves a pacemaker placed below the neck that helps control the electrical signals and calm the tremor. Unfortunately for Thom, the electrical wire placed in the brain is close enough to the speech center to have impaired his speech which is slurred as a result. Charley, another member, lost his job last December when he was asked to take early retirement and suspects that his tremor may be in part to blame since he was an ESOL teacher who taught writing, which is of course quite difficult when your writing is illegible from the tremor. And lastly I attended, a 50 year old woman, and experience like many others the anxiety-like physical and psychological effects of the tremor and its negative impact on work and social life. As the condition progressively gets worse, I fear for my future in terms of unemployment [my excessive shaking at job interviews does not likely help me get the job] and disability [since the tremor is not bad at all times, I certainly would not qualify for disability, but in situations such as job interviews it is truly a disability].

Prudy spoke and gave some perspective on E.T. in the U.S. She recollected statistics from several years ago that approximately 1 million people have Parkinson’s Disease whereas E.T. affects about 10 million. Most in our group think people with the condition do not know they have it and attribute their symptoms to anxiety or nerves. It has been well-established that having an alcoholic drink helps many with this condition, that the octanol in alcohol helps diminish the tremor for a short time, and NIH has conducted research studies to isolate the octanoic acid from alcohol for use in pill form. These studies are years old, and there is frustration among this group that development of pharmaceutical octanoic acid is stalled. While there is the newer focused ultrasound treatment, and Sara mentioned she thought there were 9000 on the waiting list, we lamented over the lack of knowledge among neurologists about our condition, and about the complete lack of development of any drug specifically made to treat E.T. The few medicines that are prescribed were developed decades ago for other conditions like high blood pressure and epilepsy and happened to alleviate the tremor for only some people. It was encouraging that Erika Appel wanted to look into the condition further and wondered why a drug had not been developed if there is a market of so many people who have the condition.

The next thing for HopeNET is the May 7th congressional briefing on E.T. sponsored by Congressman Moran’s office.

Lisa Gannon, Silver Spring Support Group Member

The Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative: The NIH Perspective

On June 12, 2013, Peter Muller, representing Tremor Action Network, attended the caucus briefing as described below.

On June 12, 2013, the American Brain Coalition organized a Congressional Neuroscience Caucus Briefing that explored the recently-announced Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, an unprecedented public-private partnership to revolutionize our understanding of the human brain. The BRAIN Initiative is poised to capitalize on scientific advancements to provide researchers with new tools to identify ways to treat, prevent and even cure brain disorders. The Capitol Hill event was sponsored by the American Academy of Neurology and the Society for Neuroscience.

Congressman Earl Blumenauer (D-OR), Congressional Neuroscience Caucus co-chair, welcomed nearly 100 attendees to the briefing, a mix of Hill staff and representatives from advocacy organizations. Rep. Blumenauer noted the importance of NIH research and introduced the Briefings speakers Dr. Francis Collins, Director of the National Institutes of Health and Dr. Story Landis, Director of the National Institute for Neurological Disorders and Stroke.

Dr. Collins provided a general overview of BRAIN. He said that NIH is excited about this initiative and they think the time is right – progress in neuroscience is yielding new insights into brain structure and function; progress in optics, genetics, nanotechnology, informatics, etc. is rapidly advancing the design of new tools. Dr. Collins then laid out the FY2014 BRAIN Initiative partners. Government agencies include NIH, DARPA, and NSF; private organizations include the Allen Institute, Howard Hughes Medical Institute, Salk Institute, and The Kavli Foundation. He then provided the goals of the NIH BRAIN Initiative and how it will work. The Plan will be developed by a working group of the Advisory Committee to the NIH Director, and will include timetables, milestones and costs. The NIH BRAIN Working Group will seek broad input and will deliver a final report in June of 2014.

Dr. Landis spoke about the potential of the BRAIN Initiative for understanding and treating brain disorders, and how outcomes from BRAIN might have applications for specific diseases. One such example Dr. Landis provided was deep brain stimulation, and how it is a significant benefit for Parkinson’s patients in the mid-course of the disease. OCD, intractable depression, dystonia, essential tremor and other circuit disorders can be treated with deep brain stimulation by using different electrode placements. Dr. Landis outlined the NIH Blueprint for Neuroscience Research, and how funds allow exploration of new strategies to accelerate progress in the neurosciences. She talked about the Neuroinformatics Framework, which is the largest searchable collation of neuroscience data on the web, the largest catalog of biomedical resources, and the largest ontology for neuroscience. Dr. Landis discussed the Human Connectome Project, the Blueprint Neurotherapeutics Project, and the ‘Virtual Pharma’ Model, as well.

During the Q&A, Dr. Collins addressed the challenges that the tight funding environment and sequestration present to NIH. He noted that BRAIN would likely be funded at a much higher level if more funding were available and that all areas of research suffer given the current situation. One attendee asked how NIH plans to involve the patient advocacy community. Dr. Collins said the NIH is working with the American Brain Coalition in determining the best way to educate and engage the patient advocacy community.

Source:  American Brain Coalition eNEWSLETTER


The potential of the BRAIN Initiative for understanding and treating brain disorders
Story Landis, PhD
Director, NINDS
Neuroscience caucus
June 12, 2013

NIH and the BRAIN Initiative
Francis S. Collins, M.D., Ph.D.
Director, National Institutes of Health
Congressional Briefing June 12, 2013