- At age 74, Paul Lyman sold his Cessna 182 airplane after deciding to seek treatment for his essential tremor symptoms.
- Last April, he traveled 400 miles to have focused ultrasound treatment at the University of Utah.
- Learn how the treatment changed his life and got him back in the cockpit.
In the fall of 2021, 74-year-old pilot, Paul Lyman, sold his Cessna 182 airplane after deciding to seek treatment for his essential tremor symptoms. After hearing about focused ultrasound from a friend, Paul traveled 400 miles from his home in Montana to be treated at the University of Utah Medical Center in April 2022. Within the last year, the pilot returned to the sky. In this patient profile, Paul describes living with ET, discovering focused ultrasound, being evaluated and treated at the University of Utah Medical Center, and how his life has changed.
When did you first notice your symptoms of ET?
The symptoms appeared over a long period of time. I was about 45 years old when I noticed a very slight shake in my right hand. But a lot of older people get shakes. I did not pay too much attention to it, because it was not debilitating, and I was able to do my job. It was just a shake that did not interrupt my lifestyle—until it did.
When were you diagnosed, and does anyone else in your family have ET?
I was diagnosed with ET in my late 50s or early 60s. ET does run in families. Neither my parents nor siblings have had tremors, but two of my three kids have symptoms. My second daughter (age 36) is starting to complain about it, and my son (age 33) has also noticed some symptoms. It does not interfere with their lifestyle or job performance, but they notice it.
When did you know you needed to seek treatment?
In my mid-sixties, the shaking became more pronounced. I gradually retrained myself to use my left hand to lift a fork or hold a cup of coffee or a glass of wine. I flyfish and used to enjoy fishing and tying flies as a hobby, but I had to stop tying flies. I was an electrical contractor by trade, and I noticed that I could no longer solder fine circuits or things like that. The symptoms seemed to progress more rapidly during the last 10 years than they did in the preceding 20 years.
Did having ET affect your ability to fly your airplane?
I never felt unsafe while flying with ET but cannot explain why. Airplanes have a lot of small dials, buttons, and instruments to push, and when there is turbulence, it is not easy to operate the controls. I did not have any issues with dialing on radio frequencies, pushing the right buttons to transponder, or anything like that. When I got out of the airplane, I had tremors again. I do not have an explanation for that other than maybe it was the need for total concentration.
In late 2021, I decided to sell my airplane, because I wanted to pursue focused ultrasound as a treatment option, and I did not know how the Federal Aviation Administration (FAA)-designated Aviation Medical Examiner (AME) would view the procedure when reviewing my pilot medical certificate. I contacted the Aircraft Owners and Pilots Association Pilot Protection Services (PPS), and PPS confirmed that the FAA AMEs evaluate all medical procedures on a case-by-case basis for denial of or special issuance of a medical certificate. The AME would review my health certificate after the procedure, and I had no idea how the FAA would respond. That uncertainty was my motivation for selling the plane.
How did having ET affect your quality of life?
I learned how to live with ET, but it was not comfortable, and it wore on me. But I never really shut myself off from people. For example, I play golf with the same guys twice a week. It would take forever to tee up the ball. But the guys were good and never mentioned it.
How did you hear about focused ultrasound as a treatment for ET?
I have a neighbor in Arizona, where we spend the winter months. He also had ET (with symptoms worse than mine) and started looking into treatment options. He told me about focused ultrasound before it was even approved by the Food and Drug Administration (FDA) or Medicare. He was contemplating getting treated with focused ultrasound, and I was intrigued because I knew I would eventually seek treatment. As it turned out, I got treated first and now he is preparing to also get focused ultrasound at the University of Utah Medical Center.
What did your doctor say about focused ultrasound?
When I told my family physician, an internal medicine specialist, about focused ultrasound for ET, she had not heard of it and thought I was talking about deep brain stimulation (DBS). After I sent her some information on focused ultrasound, she cautioned me that she had heard rumors about speech, balance, and gate problems after being treated with focused ultrasound.
I learned that the University of Utah provided focused ultrasound for ET and that it was the closest center to us in Montana, so I contacted the neurology department there and then told Dr. Johnston about it. When she gave me the referral, she asked if I really wanted to try focused ultrasound. I did.
Describe your initial evaluation at the University of Utah.
My wife and I drove 400 miles from Montana, spent the night in Salt Lake City, and had the appointment with the neurologist. He explained the differences between DBS and focused ultrasound. He then had a meeting with the entire team to review my case and the options for my treatment.
Then, the neurology department nurse and focused ultrasound program coordinator, Heather Wisner, RN, called me to explain that the process involved five appointments for five different pre-procedure evaluations, which were physical therapy, CT scan, MRI, psychology, and neurosurgery. We flew up from Tucson and spent three nights there.
My first appointment was with a physical therapist who evaluated my balance and agility. The next day, I had the CT scan and MRI. That appointment took three hours, but I was in the machine less than an hour and a half. On the last day, I had an appointment with a psychologist, who did a lot of cognitive tests, looking for signs of dementia. Most of the appointments were to establish baseline measurements.
The last appointment was with the neurosurgeon, Shervin Rahimpour, MD. He explained all my treatment options and said because I was a candidate for either focused ultrasound or DBS, that it was my choice. DBS does not fit my lifestyle at all, and focused ultrasound was my number one priority from the get-go. I was back in Tucson for two or three days when the nurse called and scheduled my treatment for April 27, 2022.
How was your experience traveling out of state for treatment?
Anytime you go out of town for a procedure, you are walking in cold, and you do not know what to expect. You worry about the logistics of getting a hotel room and transportation. The University of Utah Medical Center gave us maps for every building, and they had a concierge to lineup shuttles to and from our hotel. The medical center staff even suggested places to eat. They took care of everything. It was a top-notch experience for me, and I cannot say enough good things about the University of Utah Medical Center.
The focused ultrasound team includes the nurses, a physical therapist, a neurologist, a neurosurgeon, and a neuro-interventional radiologist to pinpoint the target in the brain. I was so impressed that the team left no question unanswered. They made sure I understood everything, and they took care of every detail, including the Medicare approvals.
What happened the day of the focused ultrasound treatment?
They were scheduling two treatments each day, and my appointment was in the afternoon. After I changed into the gown, Dr. Rahimpour came in and started shaving my head—he was hands on. The nurses took my vital signs and started an IV (which is used to administer fluids or any needed medications and to draw blood for laboratory tests). Then Dr. Rahimpour put the stereotactic frame on my head to keep me still in the MRI and tightened down the screws. The only uncomfortable part for me was getting a urinary catheter. I had never had one before.
Describe the treatment.
The focused ultrasound treatment took about three hours, and I was awake during the entire procedure.
First, I went into the MRI for 15 or 20 minutes. I could not hear anything except the music that they played for me. I could feel the cold water circulating around my head inside the focused ultrasound helmet, but I did not feel any heat from the ultrasound.
When they pulled me out of the MRI, Dr. Rahimpour came in and held up the spiral for me to draw, and I was supposed to stay within the lines. He thought he could see improvement immediately, but I could not see it.
I went back into the MRI for the second time. I did not even know when they were actually sending the beams into my head, but I could feel the rush of the cold water. When they pulled me out again, I noticed a little improvement. I went back in for the third and fourth sonications.
After the fourth time they pulled me out, I drew a perfect spiral. Dr. Rahimpour said, “Okay, we have it. We are going to take you in one last time and completely ablate the target.” And that is what they did. I was not in the MRI more than 15 or 20 minutes each time.
The way Dr. Rahimpour explained it to me is that they do the tests to zero in on the target in my brain and use the tests to make sure they are at the right spot.
After the final sonication, they sat me up and began removing the frame. Dr. Rahimpour asked me to draw the spiral again, and it was perfect. He then asked me to hold up my hand. It was rock steady. It was absolutely amazing.
At the end of that day, the doctor asked me if I was happy with my treatment choice. I said absolutely.
How was your initial recovery?
After the procedure, I did not have a single side effect, gait disturbance, imbalance, or anything like that. I spent that night in our hotel room and flew home the next morning. When I got home, my daughter and grandkids could not believe the results. My oldest daughter is a physical therapist, and she was blown away with the improvement.
One thing that struck me was that although my right hand was steady, I was still picking up things with my left hand, which still has some tremor. It took about a month for me to start using my right hand regularly. It was kind of a joy to go through that retraining process. The ET is gone, and that is a big relief. I no longer have to explain myself to strangers.
What was your physician’s reaction?
When I went back for my annual physical in the spring, I told her that I had the procedure. When she saw how steady my hand was, she said, “That it’s really amazing!” She asked me if I would be willing to talk with her other patients with ET. I said, “Certainly.”
How did treatment improve your quality of life?
When I went back to play golf with my friends, all the guys were amazed. I have also been flying again. I joined the flying club here at Mission Field, and I get invitations from good friends of mine who are pilots to fly in the left seat, so I am still hanging in there. Pilots must fly to stay proficient.
Do you have follow-up appointments at the University of Utah?
I can complete my follow up checks over the phone, so I don’t have to travel. Heather is the main one who calls every few months to ask how I am doing.
Are you interested in getting treated again, on the other side?
Yes. Before having the other side treated, the University of Utah requires patients to wait nine months after the first side. Heather emailed to tell me that the University was going to start offering treatment on the untreated side and asked about my interest level. I told her I would think about it because I was still pleased with my outcome on my right hand. I talked to my wife about it, and we decided: why not? Why not have two good hands instead of one? I scheduled an appointment to get focused ultrasound to treat my left side in the fall of this year.
What do you tell other people who are thinking about having focused ultrasound treatment?
I recently watched an online seminar that featured Dr. Rahimpour. He described focused ultrasound for ET and described the entire procedure, including the test sonications. He also talked about how the risk for side effects has decreased over time, because the procedure has been continually fine-tuned and approved over the past several years.
A few people have contacted me who are considering being treated at the University of Utah. They have the same concerns I had, and they just want to talk to someone who has been there. The last gentleman and his wife were on the phone together, and he said, “I have one more question. Would you do it again?” I told him I would do it again in a heartbeat.