I don’t know where to start but I think I have found the right place here to at least start my journey of finding a solution / physician interested in helping me.
about five years ago (38 years old) I underwent a Nissen fundoplication and developed a stricture at my GE junction that could not be corrected through dozens of dilation & temporary esophageal stent placement procedures. I was on TPN for about a year (completely unable to pass solids or liquids through my GE junction). Ultimately my surgeon completely undid the Nisssen wrap & removed 2” of my stomach & 2” of my esophagus at the GE junction and simply spliced things back together. Also through all of this I developed gastroparesis.
I have been “surviving” since then but due to my situation of not having a sphincter / valve at the GE junction I get chronic phenomena due to frequent aspiration. I have a bed that goes up but still I can’t completely prevent the aspiration that I fear will eventually ruin my lungs and eventually kill me when I get older. The gastroparesis compounds my troubles because food sometimes takes 24 hours to move through my stomach so there is never a good time to eat. I do my best these days purposely not eating for days to minimize the chances of aspiration but then I am starving so when I do succumb to hunger I go back to getting pneumonia & feeling crappy for days. I can’t describe how bad it is to aspirate in the night, it’s like drowning with your lungs on fire.
So, LINX. My original surgeon does do the procedure but he told me it’s currently “restricted” by the FDA to people that have _not_ had previous surgery like mine. Is that true or do I just need to find a qualified & experienced surgeon that is willing to perform the surgery in an “off label” fashion for a unique situation such as mine? I am a realist and understand that perhaps the LINX surgery simply isn’t applicable to me for various reasons, I just want a shot however to be evaluated and understand WHY I would not be a candiadate on a technical basis rather than just dismissing it because the FDA says its “restricted”.
I have an inherent “moderate” hiatal hernia now due to the partial resection mentioned above (i.e. less slack in my esophagus now) and I haven’t had a manometry study in a while to see what my LES pressure is these days. These could be disqualifiers for me but as I said I simply want a “shot” to be evaluated from a technical perspective to see if the LINX device would even possibly be a good fit to solve my issue with frequent aspiration and phenomena. The way I see it I have a basic plumbing problem so if I could just restore my GE junction somehow it would make a tremendous improvement to my quality of life. Also the procedure / surgery itself seems minimally invasive so if it didn’t work worst case it would just need to be removed and I would have a relatively low risk of further complications (again perhaps just wishful thinking on my part).
So, any advice of where / how I need to start my journey? I live in Delaware and found the list of doctors on the Torax web site but I have no idea where to start or even what the best approach would be to contact these doctors. Before making travel arrangements to one of these locations it would be good to be able to talk to someone just to understand if they would even be willing to evaluate me…
Any suggestions would be greatly appreciated.