The Journey of DBS Surgery
~ By Jessica Edgar ~
About a year ago, I had the pleasure of meeting Dr. Adam Hebb, a neurosurgeon from Swedish Medical Center, and spoke to him about DBS (Deep Brain Stimulation) surgery for a story in Prime Time for Seniors. He explained what makes a patient eligible for the surgery, the procedure of laying spaghetti thin leads into the brain that is unique to each patient, and working with the patient during and after surgery to fine tune the strings for the best possible outcome. I also spoke to Gayle Schendzielos who received DBS surgery after Essential Tremors had caused her to withdrawal from day to day life activities. She had become dependent on her husband for almost everything, but after receiving DBS surgery, Gayle had become herself again.
With March being Essential Tremors month and April being Parkinson’s disease month, we decided that a follow-up story was due.
I had a wonderful conversation with Ed Billings, the first patient in Colorado to receive DBS surgery, about his journey. Jeanne Echternach, who just underwent surgery this past January, shares her experience and the steps she is now taking post-op. I also spoke to Dr. Monique Giroux, a neurologist from Swedish Medical Center and medical director of the Movement Disorders and Deep Brain Stimulation program, and Sierra Ferris, a physician assistant that specializes in movement disorders and Deep Brain Stimulation therapy. Dr. Giroux and Sierra Farris are part of a small but highly skilled and motivated team of experts at the Swedish’s Deep Brain Stimulation program.
In 1957 while serving in the Navy, Ed Billings was standing at attention when he first noticed his hand was trembling. His signature was becoming less legible. He had no idea what it was or what was causing it. After the Navy, in 1959, Ed worked in the Grand Junction Fire Department for 28 years and all the while with his tremors. It was embarrassing and started affecting his social life. Ed couldn’t stand the thought of another meal with friends where food was flying off his fork. He found the one way to control his tremors was with alcohol. He would have a drink to relax his hand, which lead to a drink with breakfast, which lead to another drink…Ed said the ease of controlling his tremors with drinking had led him to alcohol abuse. He stopped drinking in 1975 and hasn’t had a drink since even though the tremors continued.
One night while watching Barbara Walters on 20/20, there was a story on this groundbreaking new surgery called Deep Brain Stimulation and this prompted Ed to talk to his doctor about it. Kansas City University was the closest place where the procedure had already been done, but a Dr. McVicker was accepting candidates in Denver at the Swedish Medical Center. A year later, Dr. McVicker, Dr. Rajeev Kumar, and surgical nurse Kim Martin performed the first DBS surgery in Colorado on Ed Billings. Ed was awake the whole time and said it sounded like radio static when they would adjust the wires. When asked to write on a board and realizing his steady hand, Ed wrote “Thank You” as his first words.
Jeanne Echternach was diagnosed with Parkinson’s disease five years ago. About seven years prior to her diagnosis, she was having symptoms such as slowness of movement, not swinging her left arm and tripping often as she walked. When finally diagnosed, she began a medication regimen that worked at first, but became less effective over time. Levodopa was added to the regimen and Jeanne’s symptoms improved but a few years later the Off time was increasing and the unpleasant side effect of dyskinesia was starting. But because Jeanne was having a positive reaction to the Levodopa when it was “On”, her neurologist urged her to consider DBS surgery.
This past January, Jeanne started her DBS journey. She completed both surgeries within ten days. In the first surgery, where the leads are placed, she was awaken by Sierra Ferris who asked her to do exercises to determine the correct placement of the leads. Jeanne was alert and in no pain. She had no fear or anxiety while being awake, just a slight tingle when voltage was increased. After surgery, Jeanne had some nausea due to the pain medication, but was able to get it under control. She recovered quickly at home and was walking around her neighborhood within a day or two.
After having the neurostimulator implanted under her collarbone, it was two weeks before it was turned on and programming started. Jeanne felt good after this first appointment noting minor improvements. After the second appointment, with the stimulator voltage increased, movements were noticeably improved but increased her dyskinesia. She realizes this will be a slow process as her brain adjusts. It can take three to six months for programming to be complete, but Jeanne knows that all these changes are heading into a positive direction. She is optimistic about the effect of DBS surgery with her Parkinson’s and can already see the improvement in her quality of life.
Dr. Giroux and Sierra Ferris co-founded the Movement and Neuroperformance Center of Colorado. These two help form the highly specialized group that performs DBS surgery and therapy. They bring with them a rare approach to patient care where they are there every step of the DBS journey. They are there to make sure the patient is a candidate that will benefit from the surgery. They handle family concerns and expectations. They perform the evaluations and are there for consultations. They review the risks and benefits of the surgery as well as the long road ahead. The DBS team works extensively with each patient in their own unique situation.
Ed Billings had returned a few years after his surgery saying that he had numbness in his arm for some time. Ferris was able to adjust his stimulator, without any surgery, to get rid of the numbness. Sierra Farris’ DBS therapy experience is nationally and internationally recognized. She has had thousands of patients visit her from around the country and the world to use her expertise. One of her specialties is her Troubleshooting Clinic for patients with complications or unsatisfactory results from DBS. She has helped find a solution for problems patients may be having from DBS surgery.
As you see, patient care doesn’t stop after a few post-op check-ups. The DBS team is with you for the long haul with the red carpet. Essential Tremors and Parkinson’s are both degenerative diseases and DBS is not a cure for either disease, but what it does offer is a way to treat the tremors and give you a new lease on life. Each patient is unique in their journey and some may not see improvement right away. It is important to follow the steps of the journey and the DBS team is always there to find a solution. The diseases will progress once again and symptoms will begin to show again, but They will be there with support you and help you with DBS therapy.
Now, as both mentioned, it’s as though you have been given a new Mercedes and you want to keep it finely tuned and monitor what is going on inside. They will help keep you walking around in style. They want you to feel hopeful and be yourself again. Dr. Giroux and Ferris strongly urge getting a second opinion, always investigate your options, and always have hope.
The lists of accomplishments and contributions are extensive and the amount of patient care that Dr. Giroux and Ferris give is tremendous. Every person I have spoken to didn’t have enough positive words to describe their journeys with these two ladies and the entire DBS team. I strongly urge you to check out their website: www.centerformovement.org. It includes bios on the DBS team and what it is all about. They also have three office locations:
- Denver Main Office
499 East Hampden Avenue
Englewood, CO 80113
- Longmont Movement Disorders and DBS Clinic
2144 Main Street
Longmont, CO 80501
- Fort Collins Movement Disorders and DBS Clinic
1024 Centre Avenue
Bldg. E Suite 100
Fort Collins, CO 80526
Please call (303)-781-0511 for appointments, consultations, information. This is their main number for all three offices.