We met Beverly during her recent trip to Washington, DC to advocate for increased patient access to innovative treatments (see Patients and Physicians Advocate for Focused Ultrasound in Washington, DC). She is a 69-year-old family nurse practitioner in Western Montana whose essential tremor (ET) forced her to leave her beloved practice caring for American veterans.
After doing her own research to learn about focused ultrasound, she traveled more than 1,000 miles to Stanford University for the treatment in June 2018. Now, almost two years later, she remains tremor free and has become a staunch advocate for others. We interviewed Beverly to learn more about her inspiring story, including how she crowd-sourced the $25,000 needed to undergo treatment (which occurred prior to Medicare approval).
Background Information
How long have you had ET? How did it affect your life, and how was it first diagnosed?
I first developed minor symptoms about 7 years ago, in 2013 or 2014, when I noticed my index finger started twitching while I was using a computer mouse or resting my hands on the keyboard. I knew from my advanced nursing practice and my family history that the symptoms I was experiencing were likely from ET. My father had a tremor that became noticeable to him when he was in the Army. His symptoms became more apparent and debilitating throughout his lifetime, affecting his ability to write legibly and feed himself. Sadly, he was not a candidate for treatment of the thalamus, and so his only options were to use skills and tools he had learned from occupational therapy. Eventually he avoided eating in public and needed assistance to dress himself. I have two siblings, one of which has mentioned the onset of a slight tremor in her dominant hand within the past couple of years.
When my hand tremor began to impede my ability to employ fine motor skills on my job and became a distraction in social settings, I consulted with my primary care physician. She also suspected ET, but we agreed to set up a consultation with a neurologist to rule out other diagnoses, such as Parkinson’s disease. At that time, we discussed using a beta blocker to help alleviate my symptoms, but I declined because the symptoms were relatively minor, I did not think that the symptoms would progress rapidly, and I did not want to deal with any side effects of the medication.
How would you rate the severity of your symptoms over time?
My tremor was basically in my hands, but when I got stressed it would also be in my head and voice. The stress of working in a busy clinical setting would aggravate my tremor to the extent that I was unable to deal with or assist patients one-on-one. Trying to use trembling hands when writing extensive medical reports was exhausting, and it caused me to fall behind in my case load. This stress, in turn, aggravated my symptoms and lead to my retirement.
How did your ET affect your quality of life in general? Did it affect your hobbies or other aspects of your personal life?
My favorite hobby is photography. I love to shoot landscapes and also do some video work. My tremor eventually prevented me from using my camera without setting up a tripod. I could no longer grab my camera and go off on a hike in the mountains of Montana to shoot wildlife or scenery without dragging along a tripod. I was also photographing some weddings and social events for friends, but I had to stop doing these events because I was not free to move around and catch spontaneous shots. It became a two-handed job to pour and drink a glass of water or cup of hot tea. I was unable to apply eye makeup, write a check, or sign a piece of artwork. As my tremors became more noticeable and limiting, my anxiety level would increase which, in turn, would aggravate my tremor.
Treatment Options
What other treatment options did you try?
In 2016, a couple of years after seeing the neurologist, I returned to my primary care physician to begin a trial of the oral medication propranolol. The tremor had become so severe that I avoided eating out in public, I was unable to hold my medical tools steady during clinical exams or use a computer with any speed or accuracy, and I even declined an invitation to a family reunion in Florida. My primary care physician prescribed a dose of 40 mg to be taken twice daily. I was already taking an antihypertensive, but she thought it would be fine. Despite usually forgetting to take the second dose each day, I found that I literally could not get off the couch and walk across the room at anywhere near a normal pace. My breathing was labored, and I felt like I was going to pass out as though my brain was not getting enough oxygen. The medication was driving my heart rate and blood pressure to dangerously low levels. I was still presenting to my clinic and trying to perform the duties of my job; however, I landed in the emergency room due to a panic attack driven by the bradycardia and hypotension.
The emergency physician advised me to taper off of the propranolol, which I did. Unfortunately, my level of anxiety continued to rise with the prospect that I would eventually have to return to work and negotiate the pressures and requirements of full-time employment. My tremor continued to become more exaggerated, and my ability to function on a daily basis at an adequate level continued to decline. The ET became so aggravated by then that when I saw patients, I would start shaking uncontrollably, now to include my spine and whole body. There were occasions where I had to reschedule appointments because I could not control my body. I could hardly speak, and my voice was severely stuttering. I realized that I could no longer control the ET, which created another panic attack that resulted in another visit to the emergency department. I was referred to an Internist, who recommended that I leave my position in the medical field and seek a less stressful way of life. I took a leave of absence from my work for a few weeks and then eventually applied for retirement. It was at this time that I began to look for ways to treat my condition and return to a productive quality of life.
How did you learn that focused ultrasound was a treatment option for you?
I began doing research on the internet. Although I was familiar with gamma knife and deep brain stimulation, my intuition told me that there must be something else. I found the Neuravive website during my research. I was able to talk to a representative who explained the procedure to me and lead me to view some videos of other ET patients who had experienced the Neuravive treatment. I was in tears when I saw their videos. The Neuravive folks guided me through the preliminary testing via video conferencing, and together with my medical records we presented my case to Dr. Pejman Ghanouni at Stanford University Medical Center. Dr. Ghanouni got on a video conference call with me, thoroughly reviewed my symptoms, and asked me several questions. The office scheduled a CT scan of my head, which was the final step for determining whether I qualified for the procedure. The CT scan was completed in Montana and the results were sent to Stanford.
Focused Ultrasound Treatment
Editor’s note: In June 2018, there were only four focused ultrasound centers that treated ET. Now, in April 2020, there are 20 centers in 15 states.
When did you have focused ultrasound treatment?
In June of 2018. I chose Stanford University Neuroscience Center with Dr. Ghanouni, a radiologist, and Dr. Casey Halpern, who is a neurosurgeon. As with all centers that treat ET, Stanford uses Insightec’s Exablate system.
What was the focused ultrasound procedure like?
Because the procedure requires extended time in an MRI machine and I am claustrophobic, I began the practice of daily mindfulness meditation and relaxation exercises to prepare myself mentally. When I went in, I opted for mild sedation under the care of an anesthesiologist, so I was relaxed. They shaved my head and applied the halo using local anesthesia on my skull. I can barely remember that occurring besides a little needle sting and pressure at the points where the halo attaches to the head. I was fully conscious and continued to carry on a conversation with the nurses and anesthesiologist throughout the prep period. I also elected to take some anti-nausea medication because I suffer from motion sickness.
Dr. Halpern went out and told my husband that the procedure was going well and that I had accepted the halo attachment without any problems. I remember being in the MRI. They slid me in and out of it three or four times over a period of five hours. Because I learned to relax and take my mind/thoughts to a relaxing place, when it was over I thought I had only been in the machine for a couple of hours at most. I kept my eyes closed and visualized that I was hiking behind my cabin in Montana. I could still hear the noises of the MRI machine and the physicians talking to me about the sonications as they were adjusting the focus point within my thalamus. Every time they slid me out of the MRI machine, I would take a pencil and draw circles on the clipboard they were holding up, sign my name, and lift an empty glass up to my mouth as if I were drinking from it. The tremor symptoms improved each time we did this as they zeroed in on the area of the thalamus where the nerves were located that they wanted to ablate. When we got to the point that I could perform these exercises with a steady hand, they said they would do one more treatment for 20 to 30 seconds, turning up the frequency of the sound waves to heat and ablate the targeted cells. During this last sonication, I felt like I was floating. I lost the sensation of the table and the weight of the halo around my head. I felt as if I had left the planet and was tumbling backwards very slowly. It was a very pleasant sensation, kind of like the feeling I had as a little girl swinging on a swing. I experienced no other sensation – no pain, heat, nausea, or anxiety. I had the feeling of settling back down onto the MRI table about a minute later. My sense of the environment returned. I felt relaxed and calm. The treatment ended, and I recovered with no negative reactions.
How was the recovery process? Did you have any side effects?
Initially I had some balance issues and listed to the right. For example, I would be standing still and then all of a sudden without warning had to take a step sideways to balance myself. The Earth seemed to slide away on the right side. My gait was fine, but it was measured and slower. I could not walk or turn at my usual pace. I was more conscious of where I was putting my feet. These symptoms lasted for about seven days and were almost completely gone by 10 days – at which time I was moving with much less hesitation or caution. At my doctors’ recommendation, my husband stayed very close to me during this time. I would not go up or down stairs without hanging on to him. It took about a month before my gate was fully back to a normal pace. Now, two years later, I might sway to the right while walking on rare occasion. I can wear my heels and hiking boots without hesitation.
I also experienced some foggy thinking post procedure. It was like a feeling that I had a glass of wine. I couldn’t cognitively respond at a natural pace, it was slower to me; however, I don’t think anyone else was aware. I really had to think about what I was saying, like my brain synapses were not firing as normal. This led to my reluctance to drive for a couple weeks. I worried I might go through a stop sign or light or would not be fully aware of my surroundings. This experience fully resolved within two weeks of the procedure. I felt fully functional as a healthcare provider within three weeks of the procedure.
Prior to my treatment, the physicians advised me that the most common post-procedural complaints were numbness on the left side of my mouth and/or tingling in the fingertips on the side of the body treated. I did not have these residual complaints. Five months later, during my follow-up consultation at Stanford, I asked Dr. Halpern whether any of his other patients were disappointed in their outcomes or had unexpected or surprising side effects. He said, although it was listed in the procedure details as a possible side effect, one of his patients was disappointed to have lost his sense of taste.
I am extremely happy with my results.
How did you pay for the treatment?
I used a Go Fund Me page to crowd-source more than $25,000 for my treatment, which occurred prior to Medicare approval. The contributions, from 55 donors over a period of about 6 weeks, ranged from $10 to $10,800. I made a 13-minute video about my experience to thank all of the friends and family who donated. I’m so grateful to each of them.
Life After Focused Ultrasound
How are you doing almost two years afterward? Any residual symptoms or return of symptoms?
As far as my symptoms, I’ve regained only about one percent of my tremor in my right hand. This is usually apparent when I’m stressed, tired, hungry, or have low blood sugar. It’s hardly noticeable to anyone but me. Once in a great while (every two to three months), I list or sidestep to the right. Cognitively, I feel as sharp as ever. My procedure was very successful. I say that focused ultrasound took away 95% of my ET from my entire body, and Dr. Halpern rates it at 98%.
Would you do focused ultrasound again or recommend it to other patients? Why or why not?
I would absolutely, without question, recommend this procedure to others. It allowed me to go back to my hobbies and to my profession in an amazingly short period of time. It is hard for me to look at my video showing my “before treatment” symptoms and believe that I once struggled to hold a glass of water without spilling. I take every opportunity that presents itself to speak to my patients and my healthcare colleagues and providers about this amazing technology. I walk up to strangers at the grocery store who I notice have a tremor and offer them my phone number and the opportunity to share with them my success with focused ultrasound.
Any final thoughts?
This noninvasive treatment is effective, immediate, and life changing. We need to have it covered by Medicare and private insurance companies so that it is accessible to the population in need. All physicians, and especially neurologists, need to know about it and know how and where to refer patients. I have made it a part of my personal mission to educate others about focused ultrasound.
Advocacy is vitally important. In fact, when I participated in the focused ultrasound fly-in to Capitol Hill earlier this year, I was lucky to get one-on-one time with Congressman Greg Gianforte of Montana. Our Congressmen are very busy individuals, however he invited me to accompany him while he walked to a briefing with President Trump across the street from his office. I was able to use the time to show him my before-and-after video illustrating the focused ultrasound treatment of my ET. It was just him and I – it was perfect. He was extremely interested in the technology, especially because it is being used for and currently in clinical trials for many other conditions, such as post-traumatic stress syndrome (PTSD) and depression. When I told him that I worked at a Veteran’s medical clinic for 11 years, it was a bonding moment because, like me, he has a strong interest in helping veterans. My fly-in group was also able to have an audience with Senator Doug Jones of Alabama, the staff assistants for Senators Tester and Daines of Montana, and Congressman Riggleman of Virginia.
Focused ultrasound is going to help so many people!
See other articles featuring Beverly’s story:
Right Scan Right Time | Patient Spotlight: Beverly McGowan 3/11/20