Posted 10/27/2023 5:09 PM (GMT 0)
I underwent a Nissen fundoplication when I was just 2 years old. For the most part, life proceeded normally until I was 32, with the exception of battling chronic asthma. about 7 years ago, I reached out to this forum, distraught and in immense pain. My GI doctor had found that my Nissen had come undone.
Even after it was repaired, I was in excruciating pain. Despite the tests showing it to be "ok" (though partially undone), my nights were filled with indescribable agony. In 2022, driven by desperation, I traveled to Austria to undergo a new procedure named RefluxStop. This involved attaching a silicone ball to the stomach's exterior to fortify the LES.
However, after coming out of the anesthesia, the surgeon informed me that due to insufficient fundus tissue (likely a result of the Nissen procedure at age 2), the RefluxStop couldn't be executed. Instead, he performed a third Nissen. For the subsequent months, I was almost certain it had failed as the acid reflux and pain persisted. However, an endoscopy confirmed that it was intact, albeit a bit loose.
My turning point came when I began taking amitriptyline. Now, 18 months post-op, I take it sporadically, mostly during flare-ups. Its nerve desensitization properties have been a game-changer for me. Although I harbor doubts about the longevity of the procedure, I've adopted a philosophy to savor the good times, as life is filled with challenges. I understand that once relief is found, it's easy to drift away from forums like this. However, today, I felt compelled to share a few suggestions for those in distress:
Amitriptyline and other tricyclics: Consider trying them. Nerve damage and pain can often mirror GI symptoms, leading to a vicious cycle.
RefluxStop: It seems to be a promising solution, offering a less invasive alternative to the Nissen. Worth researching.
Be Bold: Sometimes, stepping out of the conventional treatment box is necessary. After being turned away from both Mass General and Mayo, I ventured to Austria seeking a solution. The gravity of my pain was such that I contemplated ending my life if a solution hadn't presented itself.
Wishing everyone strength and healing. Remember, you're not alone.
-A Fellow Traveler on This Journey