Failed Nissen, volvulus, and now maybe another surgery?
Hi, there. I'm new to this site, and am reading lots right now. Thanks for all the good information here! I wanted to tell you about my situation, and ask some questions. Any comments/suggestions you may have are very appreciated.
I had surgical repair of a very large paraesophageal/combo hernia in August 2009, done laparoscopically and including a Nissen fundoplication. I was having a lot of problems before the surgery, with shortness of breath, chest pain, sleep apnea, cardiac symptoms, reflux and regurgitation, etc. The surgery worked great on one hand, but left me with some problems.
In November 2009, I had emergency surgery for an acute gastric volvulus. The surgery was "open", and I had a very large incision (10+ inches). The volvulus was apparently a complication from the Nissen. I had a lot of adhesons form, and one in particular was like a clothesline between the liver and stomach, and my stomach twisted around it.
During the emergency surgery, the surgeon noted that the Nissen wrap was comng undone. A recent upper GI confirmed it, and if I understood the tech correctly, the parts of the fundus used in the wrap are above the diaphgram. The test also showed that I am refluxing very high. I haven't talked to my GI doctor or surgeon yet about the results, as they want me to have a 24 hour impedence test first (which is scheduled for this week).
I have a number of issues since the first surgery - including strictures after both surgeries, pain while swallowing and eating, feeling like food is getting stuck, a return of reflux, often feel full after eating just small amounts, gastroparesis (but that may have actually been my stomach twisting before it went into an acute/life-threatening situation), etc etc. Some of my symptoms are now better after being back on zantac 150 for a while, though.
I certainly want to hear what my local doctors recommend at this point, but I am also planning on heading to an out-of-state expert for consultation (reaching out to University of Washington/Seattle). If I need surgery again (and I hope I don't!) I understand it would be best to have someone highly specialized in this kind of stuff do any repairs that may be needed.
Anyone else have a gastric volvulus as a complication from a Nissen? Any ideas about the chances of having another volvulus? It was pretty horrible, and once was enough :-)
I'd prefer not to have surgery again if at all possible, but not sure it is okay to leave the anatomy as it is. When a wrap comes undone, does it always have to be fixed? Or does the way it came undone make a difference in determining if it needs surgical repair?
If I have to have another surgery to repair the Nissen, do you think it could be done lap?
And, have people here generally had success with a repair?
Sorry about all the problems you are having. From what I understand, it is very difficult to have a nissen done when you have a 'very large' HH. But, if it was done and the surgery is now coming 'undone', I have to wonder about the original surgeons competence. If you recently had a surgery to repair the volvulus, and the surgeon noticed that the nissen was coming undone....why didn't he fix it at that time...you were already open?????????????
Hi, and thanks for the response, and good question :-)
The emergency surgeon said he didn't repair the wrap, as his primariy job was to get in there - fast - and deal with the emergency situation. I got in to surgery in the nick of time, and was lucky to come out with my life and all my GI system (and still spent 7 days in the hospital, with a pretty painful/tough recovery). I'm also guessing that he wasn't comfortable trying to do a revision of the Nissen, as that is so specialized. He also didn't do any kind of "preventive fix" to prevent a volvulus from happening again, as he said it would have interfered with the future Nissen repair, and he thought the odds of having another volvulus were pretty slim. (but on the other hand, I have to wonder what would keep a volvulus from happening agaiin..especially given that they are a possible complication from a Nissen)
In making the initial decision to have the hernia repair, I interviewed two surgeons who both recommended surgery sooner than later as it was already very large (we didn't know at the time that it was a paraesophagel/combo hernia - apparently sometimes it is difficult to know that until the surgeon is actually in there). I made the decision to proceed with surgery given how severe my symptoms had become, especially over the past year, and how much larger the hernia had gotten in that time (from large to very large).
(Not really) Funny how it worked out though. With a paraesophagel hernia, surgery is usually not considered "optional" given the risk of stomach strangulation. I have the surgery....and ended up with a volvulus anyhow :-(
Sorry you've been through so much. My lap Nissen has been fine (coming up on 10 years), but I had a pretty straightforward case, unlike you. One thing you learn here is that everyone's situation is different, so it's sometimes difficult to generalize.
My surgeon told me that a large HH is very difficult to repair, due to the nature of the muscle, and thus Nissens can fail as a result. She actually refused patients with large HHs, becuase she did not like to put them through everything, only to have the long-term outcome be what it is. Sounds like that might be the case with you.
None of us knows what sort of fixes might work for you -- you will have to ask doctors (we are not) who have faced similar challenges and who have reviewed your records. Make sure you find ones who are interested in your case.
Hang in there, and good luck!
Hi, Thistle, and thanks for your comments. It was good to start getting my thoughts/questions organized here as part of my preparation for upcoming appointments. Thanks for listening to my story in the meantime.
Meant to mention that prior to my Nissen, my doctors disagreed about whether I had an HH. (I was born without an LES, and that's why I had the operation.) Turns out that I did not, something my surgeon proved when she got in and looked. So I can believe that your situation was the same sort of situation -- they didn't know what was going on until they saw it.
Hang in there, and good luck!
Wow, Thistle! I'm glad your surgeon was able to help you, and that you've been doing so well.
Thanks again for the support.
I know exactly what you went through! I had a volvulus 3 days post nissen. Get in touch with me!
Hi, Martin93100. So sorry to hear that you have been going through this too. I would like to connect with you as well.