We were fortunate 18 months ago to meet Dr. Bettina Kilburn MD, who was one of the first GERD sufferers to experience LINX surgery. In her initial story, Why I chose LINX, Dr. Kilburn shared her experience from symptoms, to diagnosis, and finally to surgical treatment. At that time she was 2 years post surgery and in her words, “I was able to work and to play—to travel, to hike, to bicycle, and more—and to enjoy each moment of life as a former GERD sufferer.” However, there were signs that all was not well, and through RefluxMD, Dr. Kilburn met Dr. Tom DeMeester, RefluxMD’s Senior Medical Advisor, and together they wrote another chapter in her GERD free journey.
Prior to choosing the LINX surgery Dr. Kilburn had fully evaluated all of her treatment options, including other surgical procedures such as a Nissen fundoplication and a TIF procedure. As she told us, “I knew that the Nissen was the “gold standard” definitive surgery. LINX had much more appeal to me because early results showed success equivalent to a properly done Nissen, but without the side effects. Plus it wouldn’t preclude a Nissen if the Nissen became a consideration.” Recognizing that she was an early adopter of a new surgical procedure, and with the knowledge that all surgeries have some risk, she chose the LINX procedure because it was reversible – a fact that became increasingly more important over the next two years.
Post-surgical problems become evident
Dr. Kilburn experienced some discomfort swallowing and several incidents of regurgitation after her surgery, however they improved over time. “As far as the stasis (residue in the esophagus) and clearance problems, I’m aware only of slight delays on occasion,” she told us two years after her surgery, and she added, “I’m able to eat a wide variety of foods without problems.”
Over time, though, she began to notice some pooling above the area where the LINX was positioned, along with some mild regurgitation. She began eating slowly to avoid discomfort.
Dr. DeMeester joins the team
According to Dr. Kilburn, Dr. Tom DeMeester was concerned as he learned about her struggle to find relief and good health. “Dr. DeMeester and I started corresponding a few weeks after RefluxMD published my story. Dr. DeMeester’s concern about my tiny bites, and snail speed eating was discouraging for me to hear. Plus, he noticed that the quality of my voice was “off.”
“It took a lot of testing to sort out what the problem was. Dr. DeMeester conferenced with my gastroenterologist and me as he went over all of the findings—he wanted to review every detail and also to help me have a full understanding. I knew that Dr. DeMeester’s concerns weren’t just the observations of a pre-eminent scientist. They came from his heart as well. ‘I’m here for you’, he said many times—and he meant it. Over time, Dr. DeMeester has become a cherished friend to me, as he is to so many he has mentored and cared for during his storied career.”
Prognosis: Another LINX surgery
The positioning of the initial LINX device was too low, which was creating problems for Dr. Kilburn. Her esophagus was “capturing” food, liquid, and small, normal amounts of refluxed acid. All of it was slow going down to her stomach. She was forced to follow a strict antireflux diet along with PPI medications twice daily to get relief. “My esophagus couldn’t work efficiently because my “too-low” LINX was blocking the way. So surgery to correct the LINX position emerged as the best option for me. Yes, LINX is reversible. But explanting it requires careful surgery to break up the scar tissue around it—taking it out does have risks. Dr. DeMeester connected me with Dr. John Lipham MD, at USC, whom Dr. DeMeester had trained. Dr. Lipham had already done several LINX revisions to correct position problems.”
“The night before surgery, Dr. DeMeester and his very gracious wife, Carol, prayed with us. On the day of “the big event”, as I called it, Dr. DeMeester helped me stay centered during the pre-op, reminded me that God is in charge as I received anesthesia in the OR, and consulted with Dr. Lipham through the entire operation. My husband and I felt a deep sense of gratitude. Given the circumstances, I couldn’t have asked to be in better hands.”
A second surgical recovery
Having previously experienced antireflux surgery, Dr. Kilburn had some idea about what to expect. “Because my esophagus had some “catch up” healing to do, and because of the extent of surgery needed for “redo”, Dr. Lipham cautioned that I might have a rocky post-op course at first. He was right. I had no honeymoon.
“Swallowing was uncomfortable from day one. Five days after surgery, food got stuck in my esophagus completely. Eventually I got it down. The same thing happened again on day 10. And then I started to get better. Day-to-day I noticed small differences but week-to-week I’ve improved significantly. And I continue to get better—more slowly than I did the first 8-10 weeks, but still better. Now at three and a half months after surgery, I’m off PPI’s –and eating more normally than I have in a very long time. My voice is back.
Dr. Kilburn has no regrets
“Medical science doesn’t move forward without patients willing to risk sailing on the shakedown cruise for new technology. GERD is still a tough disease—for all of us. The learning curve continues, and that means failures as well as successes. My journey isn’t the one I anticipated, and at times it’s been distressing. But so many people worked thoughtfully and relentlessly to find a solution. My gastroenterologist, Dr. DeMeester, and Dr. Lipham, along with the team at Torax Medical were with me, and still are, all the way. They didn’t give up. That made a world of difference to me.”
Dr. Kilburn’s thoughts for anyone considering antireflux surgery
“Barring an emergency, the decision to have surgery is huge, medically and emotionally. You and your surgeon are committed partners in a venture of both the known and the unknown–possibly a long term one. Take the time you need to feel trust and confidence– so that you’re committed 100% to the surgery and the follow up”. We strongly agree with Dr. Kilburn. A successful surgical outcome starts with finding a top GERD expert and creating a personal and trusting partnership.
Thank you Dr. Kilburn for sharing your story. We hope many others will consider a surgical treatment with her thoroughness and knowledge. If you would like to continue to follow Dr. Kilburn’s progress, she periodically updates her story at GERD Free Journey, where she also replies to questions from visitors.