Industry and Advocacy Working Together to Raise ET Awareness

By Ramya Singh, Vice President – Americas
INSIGHTEC

March is National Essential Tremor Awareness (NETA) Month, a time specifically dedicated to educating the public on what living with the most common movement disorder really looks like. The team at INSIGHTEC focuses on this throughout the year as the innovator of focused ultrasound technology, an incisionless treatment option for certain people living with ET who do not respond to medications.

photo of Ramya Singh with Insightec

I just had a phone call from a woman desperate for information to help a friend of hers who is living with essential tremor, which is impacting his ability to live independently. We are inspired everyday by stories of courageous people sharing their experiences living with essential tremor. Our campaign this year is based on “Get a Grip on ET” and we are working alongside the International Essential Tremor Foundation with their efforts in “Raising the Curtain on Essential Tremor” so their voices are heard far and wide.

We share the stories of patients like Gregg. When Gregg’s essential tremor worsened, his livelihood as an electronics technician was threatened as he lost ability to use tools like a screwdriver. Determined not to let his hand tremor get in the way of his career, Gregg had the focused ultrasound treatment. Ever since, Gregg has been able to get back to performing everyday tasks with ease and can continue doing the job he loves.

There is not just one story, but thousands: Karen who went to the beach the day after focused ultrasound treatment . . . Haya who was able to get back to baking . . . Alexandra who is still amazed by her steady hand . . . Gary who was able to write a hand-written letter to his sister . . . Beverly who is back engaged with her photography . . . Bob who has been sharing his experience on Facebook.

By amplifying individual stories in awareness campaigns, we strive to increase understanding of essential tremor. We support the goal of “Raising the Curtain” to educate the public so they do not think that a person with tremor is nervous or drunk. We want people to recognize essential tremor is a challenging condition, but we also want to emphasize it is not the only thing that defines a person.  

Do you or someone you love live with essential tremor? We invite you to share your passion and what is essential to you in order to help more people understand that ET does not have to be the central part of one’s identity.

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Seven Questions to Ask Before Neurosurgery

If you are considering surgery as a treatment option for your essential tremor, there are some things you will want to consider before scheduling your surgical appointment. It is vital you fully understand the possible risks and benefits of the procedure. False expectations and inaccurate information can lead to negative outcomes, so it is best to do your homework in advance.

One way to make sure your expectations are reasonable and you understand exactly what is involved is to have a frank discussion with your neurosurgeon. Having a thorough conversation well ahead of time ensures you are comfortable with your surgeon’s treatment plan, you understand what outcomes to expect, and what recovery entails for you.  

Involve your family members and loved ones and invite them to come with you to your consultation appointments. It is often best to have a second set of ears listening to the information, as it can be a lot to take in all at once. A friend or loved one might also take notes for you and help ask questions you may not have considered. Plus sometimes, it’s nice just to have an encouraging hand to hold.

Here are some questions to ask your surgeon, to help get your conversation started:

What is your experience with the procedure; what is your success rate, and what is your complication rate?

With something as delicate as brain surgery, you want to ensure your surgeon has the experience and skill to offer you the best chance of a positive outcome. A good surgeon will give you the opportunity to speak with other patients who have had the procedure and discuss what could go wrong.

Am I a candidate for deep brain stimulation, focused ultrasound, or Gamma Knife? Why or why not?

There are three different options for the surgical treatment of ET. Understanding why a procedure is or is not a good fit for you is an important part of the decision-making process.  

How much tremor control should I expect from my chosen option?

No surgical procedure will “cure” essential tremor, and each procedure has different amounts of tremor control expected. It is also good to know if the surgery you are considering can impact other areas of your body impacted by tremor, such as voice or head tremor.

What are the risks, benefits, and possible complications of this surgery?

Surgical procedures will not remove your tremor completely, forever. Being able to compare the risk factors against the possible benefits helps manage expectations and prepare you if your outcome should be less than perfect. You should ask about pain, chances of infection, physical limitations, etc.

Walk me through the procedure, including the steps I need to take to get prepared for surgery.

Will you have to shave all or a portion of your hair? Do you have to stop taking your medication? Can you drive yourself home or should someone drive you? Can you eat the day before the procedure? Are there any tests or pre-op procedures you will need to do before the actual surgery? These are all things to ask before you arrive for your surgery. Making sure you have everything done and ready on your end will help the process move efficiently. Part of being a good patient is
being prepared.

Some procedures require an overnight stay in the hospital; some may be done on an outpatient basis. It is a good idea to find out exactly how long you will need to be in the hospital, what types of follow-up services you might require, and how long it will be before you can return to your regular activities such as driving or returning to work. It’s important to follow your physician’s recovery instructions so you can return to you regular routine as quickly as possible.

How much does this surgery cost?

You should check with your insurance company in advance to ensure your physician, the facility, and the procedure is covered by your plan. If you are responsible for all or part of the costs of the procedure, be sure to find out when payment is expected. Some facilities require all payments in advance, while others will bill you for the amount not covered by your insurance.

The decision to have brain surgery is not something to be taken lightly. It is, after all, brain surgery. But for those whose symptoms are not controlled by medication(s) and whose tremor negatively impacts activities daily living such as eating, drinking, writing, grooming, etc., surgery may be the best option for tremor reduction. Developing a strong relationship with your neurosurgeon and asking some important questions is key to a positive outcome.

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Oh Lord, Please Take This Tremor from Me!

March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on ET and raising awareness. Please share these stories with others and share your comments and words of encouragement.

By Anna,

I first noticed I had a head tremor when I was approximately 10 years old. I remember people would ask me why I was shaking and I really didn’t know. And at that age, I didn’t seem to care that much as it didn’t happen that often. I actually blamed it on a neighbor pushing me out of a tree when I was around that age. I thought I had jolted something out of position. My dad didn’t have his tremor yet as it only came on for him when he was well into his 60s.

NETA month 2019 Logo

As I got older and into high school, the tremors seemed much more frequent. But as long as I kept moving (didn’t stay still) they weren’t noticeable. So I began vigorously shaking my leg when I sat still, especially in school. I remember my teacher asking my mom if I did drugs. My mom just said “she’s a bit anxious” which also was true. The hardest part was feeling out of control and not really knowing why.

After I graduated and found out I actually had essential tremor I decided to try some different medications to see if I could calm it a bit. I tried gabapentin, topiramate, propranolol and primidone but none of them were worth the side effects they brought on. I even tried Botox injections in my neck but after all the pain and the money, I felt no relief. I started taking antidepressants in my early 30s which helped me deal with the tremors a bit better than without them.

Into my 40s, I found out about Deep Brain Stimulation (DBS) surgery and from then on I was on a mission. You see, I was starting to become an introvert. I hated going anywhere where I had to sit still. I had three beautiful children and worked full time at a bank and as long as I could move a bit I could camouflage the shaking. Honestly, I think it was way more pronounced in my own thoughts than it actually was outwardly. But that didn’t matter. To me, I was a freak and I couldn’t stand the thought of people looking at me and either wondering what was wrong or feeling sorry for me. It was really hard to concentrate or focus.

“I can’t count the number of times people asked me if I was cold and I would say yes just because I didn’t want to attempt the ET story and have them feel bad for asking.”

Whenever my bank manager called a meeting, which was almost daily, I literally felt sick to my stomach because I WAS IN THE DREADFUL SITUATION OF TRYING TO SIT STILL AGAIN. And it was actually physically painful because the more I tried to sit still, the harder it was. It was like an internal/external battlefield and all I wanted to do was fall asleep and be still.

The dentist was just as bad or worse. And the time I had a small precancerous spot removed from my forehead was absolutely horrifying because the nurse could not hold me still while the doctor cut me. I even stopped going to church, which I only started in my 30s, but was enjoying. I do remember praying, “Oh Lord, please take this tremor from me!”

Well, in 2006 my prayers were answered! I got my double Deep Brain Stimulation (DBS) surgery. It worked! I was over the moon. I had to get my chest opened again in 2011 and 2016 to get new batteries, which as fine. In 2018, I needed new batteries again and I noticed my tremor coming back quite a bit. From 2006 until 2016 whenever I noticed my tremor creeping back, I would just turn up my stimulators and I was pretty much still again. But the downfall in turning them up was that the wires implanted in my brain were so close to my speech center that every time I turned them up it would be a little harder to talk. Unfortunately now, 13 years later, I sound like I have a speech impediment and it is a chore to talk. But don’t get me wrong, I will NEVER regret the surgery and I will take the speech issue over the tremors any day.

Now I’m hoping and praying to get the new focused ultrasound surgery. I am always positively searching for a better quality of life. So my advice to anyone else suffering with ET is: do what feels best for you. The DBS was an absolute godsend for me and gave me 12-13 years and it’s still not bad, but if the new surgery can help my speech and I am eligible, that will be my next quest. I want to live my best life.

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How Does Medicare Cover Essential Tremor?

By Danielle Kunkle Roberts,
Co-Founder of Boomer Benefits

Danielle Kunkle Roberts, Boomer BenefitsEssential Tremor (ET) is a neurological disorder that causes involuntary shaking and trembling. It affects approximately 10 million people in America, according to the International Essential Tremor Foundation, which makes ET the most common neurological disorder.

While not dangerous, the condition can make simple tasks such as tying your shoes or drinking a glass of water more difficult. ET can also get worse over time.

Because ET is more common for people in later adulthood, it’s good to know how Medicare will cover treatment of this disorder.

Medicare Part A Hospital Benefits

Original Medicare is made up of Part A hospital benefits and Part B outpatient benefits. 

Part A covers inpatient hospital stays, skilled nursing facility care, and hospice care. This is the part that would pay most of the expenses related to a hospital stay for deep brain simulation (DBS), which is a common surgery that provides relief from tremors and stiffness.

Medicare Part B Hospital Benefits

Medicare Part B covers outpatient care. This includes doctor visits, preventive care, lab-work, diagnostic testing, emergency care, outpatient surgeries, physical therapy, durable medical equipment and much more.

Part B will pay for your patient visits to your specialist, the necessary neurological exams and lab-work and any outpatient procedures used to control ET symptoms.

One outpatient procedure to treat ET is focused ultrasound treatment. This minimally invasive treatment was approved by the FDA in 2016. It is the first brain disorder treatment to be allowed reimbursement by Medicare Part B. The procedure destroys a small amount of brain tissue that contains nerve cells which are responsible for the tremors.

Earlier this summer Medicare announced benefit coverage for patients in 16 states. Additional states were added this past fall. There are numerous medical centers that now treat patients with Essential Tremor using MR-guided focused ultrasound. A Medicare physician must document why the procedure is reasonable and necessary.

Medicare Part D Drug Benefits

Outpatient medications to help treat your ET symptoms will fall under Part D. Medicare Part D is optional coverage  beneficiaries can purchase to reduce the cost of their prescriptions.

These plans are sold by private insurance companies and each plan has its own premiums, copays, coinsurance, pharmacy network, and drug formulary. Beneficiaries can use Medicare’s Plan Finder Tool to search for the right plan.

Your Medicare Cost-Sharing

As with all insurance coverage, Medicare covers a share and the member also pays a share of their coverage. This is called your cost-sharing and it usually comes in the form of deductibles, copays, and coinsurance.

Part A has a $1364 deductible in 2019, and Part B has a smaller $185 annual deductible. Medicare Part B covers 80% of your outpatient procedures. You are responsible for paying the other 20%.

Fortunately, you can supplement your coverage with either a Medicare supplement policy or a Medicare Advantage plan. Both types of coverage will help to limit your out-of-pocket expenses on the gaps in Medicare.

Beneficiaries can call 1-800-MEDICARE or consult a Medicare insurance broker for guidance in choosing a plan that fits their needs and benefits.

                                                               * * * *

Danielle K. Roberts is a Medicare insurance expert and co-founder at Boomer Benefits, a licensed agency that helps beneficiaries with their supplemental coverage options.

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IETF Medical Advisory Board Member on TED

Dr. W. Jeffrey Elias photo

Dr. W. Jeffrey Elias

TED, a nonprofit devoted to “Ideas Worth Spreading”, brings the world’s most captivating speakers to the masses through short, prepared talks covering today’s cutting edge technology, entertainment, and design topics. The TED conference recently visited Charlottesville, VA, where IETF Medical Advisory Board member, Dr. W. Jeffrey Elias, discussed his work on the Focused Ultrasound research study for essential tremor.

As Director of Stereotactic and Functional Neurosurgery at the University of Virginia,Dr. Elias has led a number of research investigations. In 2011, his team became the first in the world to successfully treat a person with disabling [essential] tremor using focused ultrasound that was guided by magnetic resonance imaging (MRI). This procedure and subsequent clinical trials have resulted in an outpouring around the globe of investigations using ultrasound interventions to treat disorders of the brain. ¹

In his presentation, Dr. Elias shared his study results along with a message of the importance of research to further scientific advances.

Watch the taped presentation. Dr. Elias is the second to the last speaker (click on the timeline at approximately 08:30.00 to get right to his section).

¹[Unattributed] TEDx, http://www.ted.com/tedx/events/8358. Nov.15, 2013.

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Phase III of Focused Ultrasound Trial Begins

 

Dr. W. Jeffrey Elias photo

Dr. Jeffrey Elias and the ExAblate

The first patient has been treated as part of a Phase III trial evaluating the success and safety of treatment using the ExAblate Neuro on essential tremor patients. The study builds on promising pilot studies demonstrating the preliminary safety and effectiveness of MR guided focused ultrasound technology. Read about Phase I of the trial here.

The results of this trial are expected to support a submission of the ExAblate Neuro to the FDA for Pre-Market Approval.

InSightec, makers of the ExAblate Neuro, will be partnering with BIRD (US-Israel Binational Industry R&D) and the Focused Ultrasound Foundation for this trial.

Find information on registering for this and other essential tremor studies at clinicaltrials.gov.

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Results From Focused Ultrasound Study

 

ultrasoundstudy_patients

Dr. Jeff Elias (center) and the patients who participated in the essential tremor study at UVA

The New England Journal of Medicine published the results of the pilot trial for the use of focused ultrasound to treat patients with essential tremor. These Phase I results indicate that focused ultrasound can safely and effectively treat targeted areas deep in the brain.  In focused ultrasound, more than 1,000 ultrasound waves are focused to a single site in the thalamus for the treatment.

The study included 15 patients with essential tremor that could not be managed by medication. Jeffrey Elias, MD, neurosurgeon at the University of Virginia and IETF Medical Advisory Board member, is the lead investigator of the study.

Phase I findings:

  • Dominant hand tremor improved by 75 percent.
  • Substantial improvements in daily disabilities (85 percent) and quality of life as assessed by clinicians and patients.
  • Outcomes and complications were comparable to surgical procedures for tremor, including radio frequency thalamotomy and deep brain stimulation.

Phase III of this study will begin soon. For information on how to register, visit clinicaltrials.gov.

The IETF will continue to watch as results of focused ultrasound studies are posted. Large, randomized controlled trials will be required to assess the procedure’s efficacy and safety.

Watch a video featuring Billy Williams, the first patient treated with focused ultrasound for essential tremor.

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