We often hear from readers looking for more information about the LINX Reflux Management System. This relatively new procedure offers relief from reflux without the side effects associated with the traditional Nissen Fundoplication. Dr. Bettina Kilburn was one of the first patients to receive the LINX implant following FDA market approval. We reached out to Dr. Kilburn after she commented on RefluxMD, and she graciously agreed to share her story here. Keep reading to learn why she chose LINX and to see how she’s doing today.
My GERD Diagnosis
I’m a psychiatrist. Being a physician but neither a gastroenterologist nor a surgeon, I wasn’t knowledgeable about GERD until it impacted me personally. In November 2010, my dentist noticed some acid damage on my back teeth and recommended taking TUMS at night. I should have been more concerned, but at the time I didn’t pursue any further evaluation. Within a few months, I noticed that some foods started to “come up” and I experienced “heartburn”—and then some foods and liquids started to “burn” going down. I got myself to a gastroenterologist. On EGD (upper endoscopy) I could see the ulcers in my lower esophagus for myself. By the time I was diagnosed with GERD in March 2011, I had erosive esophagitis.
Learn more: Inside your esophagus: The damage caused by GERD
Living with GERD
I started a strict regimen of disciplined eating, elevation of the head of the bed at night, and a once daily proton pump inhibitor (PPI). All of that helped greatly in terms of symptoms. I made it a point to learn more about GERD—a progressive disease with serious risks. I had seen it progress to Barrett’s esophagus and to esophageal cancer in my own circle of family and friends. Within a few months, my own GERD progressed to include a nagging cough, sore throats, and hoarseness. After more evaluation, I was diagnosed with laryngopharyngeal reflux (LPR or “atypical reflux”—the acid was getting high enough to affect my throat and voice). I started taking PPI’s twice daily and continued the other lifestyle changes. By fall 2011, my symptoms were reasonably well controlled, but not fully so. Controlling my GERD symptoms impacted nearly every activity in my daily life. Plus, I had become concerned, increasingly, about the long-term risks of PPI’s, especially in high doses. Forefront in my mind was the potential for progression to Barrett’s and esophageal cancer.
Consideration of surgery
I took the initiative in exploring surgery. The main surgical option available at the time was the Nissen fundoplication. My investigation of the Nissen included consultation with two gastroenterologists and two surgeons (I sought a second opinion) and discussions with a medical school classmate surgeon and with three colleagues who had undergone the Nissen and were pleased with the results. I learned about the drawbacks. Not everyone with whom I conversed or consulted had the same thoughts or opinions. I concluded that in the hands of an experienced surgeon, I would have a good chance at achieving good results and that likely, on balance, I could deal with the risks and the side effects.
Learn more: GERD Procedures at-a-glance
While I was considering the Nissen, and leaning toward going ahead, I did more research and learned about previous U.S. trials of magnetic sphincter augmentation called the LINX Reflux Management System. I found the idea of a magnetic bracelet augmenting my natural valve intriguing and wanted to know more about the status of the device and to determine if I would even be a candidate. I reached out to the device company and to one of the surgeons who had participated in the FDA trials. At an evaluation at Mayo Clinic Jacksonville in December 2011, I received mixed news. The good news was that I was a candidate. The challenge was that the FDA had not yet approved the device for market and there was no way to predict if and when that would occur.
I chose to wait for a while to see what the FDA might do. The track record for LINX results was small and not long term, but promising. Implantation with LINX wouldn’t preclude later conversion to a Nissen in the unlikely event that conversion would be needed. On April 10, 2012, I had the privilege of being the fifth person in the United States to participate in implantation following FDA market approval of the device. I was among those willing to take the risks of joining the early post approval learning curve because I had so much to gain.
Surgery and recovery
My implantation was minimally invasive (laparoscopic) ambulatory surgery. By late afternoon, I was in recovery. By evening I was out of the hospital and eating normal food, as per dietary instructions. I stopped my PPI medication immediately and said farewell to slant pillows. For the first time in forever, I was able to enjoy chocolate, fresh squeezed orange juice, pasta with tomato sauce, and many previous “no” foods—with no GERD symptoms.
The recovery was not without its challenges. About two weeks after the procedure, I had some definite discomfort swallowing and a couple of episodes of food coming up from my esophagus. It wasn’t fun, but I noticed that what came up didn’t burn like stomach contents would, so what did get to my stomach was staying there. The discomfort and regurgitation resolved quickly.
Learn more: Ten things you need to know about LINX
After several wonderful months, the swallowing issues discomfort returned, along with some other unpleasant experiences, including pain and a food impaction—food got “stuck” temporarily in my esophagus before finally going down. Testing showed that the most likely problem was esophageal stasis and lack of clearance. What was getting to my stomach was staying there, but not all of it was getting there promptly. The solution was making dietary changes to prompt better esophageal peristalsis (movement to get food from my esophagus, through the device, and into my stomach) and to absorb the residual food acid in my esophagus. I followed my surgeon’s recommendations. Also, I kept a food diary and identified additional changes I could make. At the time, this was very distressing. Later, I learned that my experience was similar to that of other early post approval patients. Surgeons and gastroenterologists know much more now about the post-LINX esophageal healing process and about how to reduce and deal with these problems. Dietary recommendations to patients have become more specific than “eat normally”.
At two years after surgery, I remain 100% free of GERD symptoms and off PPI’s and topical antacids. As far as the stasis and clearance problems, I’m aware only of slight delays on occasion. I’m able to eat a wide variety of foods without problems. I’m 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.
Pizza in Italy…something I couldn’t have contemplated enjoying pre-procedure.
What I Hope You Will Take Away
My journey with (and now without) GERD is one story among the many, many stories that make up GERD statistics and research. I’m honored to share it as a GERD patient advocate. GERD falls into a “gray” area—not exclusive to one medical specialty. I learned early that different specialists involved in treating GERD (in my case gastroenterologists and surgeons) will likely approach GERD from their own “take” and knowledge. You are your own best advocate. It’s critical to have a good GERD specialist/team, but you have the most invested in your long-term health and are the most important member of that team.
I offer more information and welcome questions and conversation at http://www.gerdfreejourney.com
Thank you to Dr. Kilburn for sharing her story! If you, too, are concerned about the long-term side effects of PPIs or the risk of esophageal cancer, consider seeing a GERD expert to learn about your surgical treatment options.