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Nissen #2 Complete... And The Complications Return

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Posted 2/21/2014 9:00 PM (GMT 0)
Hey all,

Just had Nissen Fundo #2 late last summer (#1 was in 2005). This was a half-wrap with a little mesh in there to help the diaphragm. The doc said it's healed perfectly and things should be normal, but they've actually begun to get worse. They did a dilation, which apparently also went well, but it still feels awful.

I'm taking a sort of muscle relaxer before meals, but my esophagus is still a constant source of pain. There's no real rhyme or reason for what causes it; even eating and drinking can inconsistently either make it better or worse. But it's present about 5 or 6 days a week and is causing a mess of me, especially with my insurance situation threatening to change if I can manage to switch jobs soon.

They didn't see any EoE when they scoped it, and he said the wrap was intact when I did a barium swallow (albeit somewhat tight, hence the dilation), so I'm wondering what to do. Does anyone have any ideas of what else it could be? I've tried pretty dramatic diet changes too with no results. I have another follow up in a couple weeks, but I want to have some ideas to throw out so I can get this taken care of before it bankrupts me and truncates my future.

Thanks.
Posted 2/21/2014 10:37 PM (GMT 0)
Have you tried amitriptyline? It can reduce the amplitude of the nerves.
Posted 2/25/2014 5:53 PM (GMT 0)
I've been on a couple pills for spasms and the sort, but no discernible changes...
I mean, I just look at a list of possible explanations and am at a complete loss here. It's awful.

Does anyone here know what the typical symptoms are of a wrap that's too tight? It was a hypothesis of the doctor but, considering I still burp regularly and all, I can't imagine that's the issue here...
Posted 2/26/2014 12:03 AM (GMT 0)
JK,

Welcome! Sorry you are having trouble. Does it feel like the pain you have when you have acid reflux or does it feel like pain you have after surgery, like raw and sore? I had a Nissen Fundo in 2009, I am scheduled for a redo on March 13. My surgeon is also going to do a partial wrap, he says everyone has to throw up some times and the partial is less likely to come undone. Keep posting about how it feels and maybe there will be someone out there that has had similar symptoms and can give you some ideas. GC1pink, Right? It sounds like it wouldn't be a big deal to make a new LES considering all the other things they make and replace for the body!
Posted 2/27/2014 10:27 PM (GMT 0)
It's not quite the same as acid reflux, but it's not entirely dissimilar. Lately it's just felt like my mid-to-lower esophagus is closed up or has an intense pressure on it. Even burping doesn't relieve the sense of pressure for long. Basically, my lower esophagus feels constantly irritated, and I don't seem to get any relief from PPIs.
Occasionally it feels like I'm choking. Generally, it's just a nagging, dull pain.
Posted 2/27/2014 10:41 PM (GMT 0)
[J.K.]

Generally an overly tight wrap will cause dysphasia, stuck food. It will feel like a boulder sitting at the wrap site and can be painful when it goes through or may have to be brought back up.

Not sure your exact surgery date, but up to and possibly shortly after the 1 year mark food can sit at the wrap site, a small amount. This can ferment and feel like reflux and irritates the wrap area. Have you tried drinking something warm shortly before you eat? Also drinking a little more after you finish your meal can help wash this through.

Sometimes if this is happening you may beed to back off your diet just a little for a seek or so and let things settle down.

Take care,
Bill
Posted 4/1/2014 7:26 PM (GMT 0)
Hey again. It's been a little over half a year since my second operation now. I've had two dilations, but I'm as bad as I've ever been. My esophagus causes pain on a daily basis and I'm really growing fatigued as my whole life has been truncated under the ceaselessness of this all.

They've scoped it and have done another barium swallow, and they seem to think the wrap is intact. I'm dealing with my third set of doctors since this began three years ago, and nobody seems to be entire certain what the cause could be.

Being that it's mostly in the chest, I can only assume it's reflux, but why would is still be happening after another intense operation like that?
Does anyone have advice about how to approach the doctor or surgeon about this? I can neither financially nor emotionally afford to carry this on, so I'd like to be efficient and expedient about dealing with it.
Posted 4/1/2014 7:53 PM (GMT 0)
Hi,

have they tried a repeat manometry and PH study, to see if that could show anything?

Hope you feel better soon

Posted 4/4/2014 4:42 PM (GMT 0)
So far, they've only done endoscopies and a barium swallow. I've created a template to track my symptoms, diet, and pain levels for a week so that when I go in next I can say: here's what I've been up to...
Posted 4/4/2014 5:09 PM (GMT 0)
Hi JK,i agree with GC1pink,i think manometry and ph studies would be the way to go.
I had two nissens done with the first being too tight as I has motility issues,my second was a partial,which has been great.Manometry showed up my problem.
Barry
Posted 4/4/2014 7:05 PM (GMT 0)
Baza, if I may ask: were the symptoms of overtight wrap nearly parallel to that of your struggles with GERD? Could you describe the pain before versus the pain after with the too-tight wrap?
I'm curious because, while I have faith in the doctor and believe that this mesh-reinforced half-wrap seems like the smartest way about things, I still find myself burping often. What makes me nervous about the burping is that it seems indicative of a loose wrap (especially coupled with my symptoms), but I can't imagine it would fail so outright.

Thanks so much. I really do appreciate this community as a resource. Ever glimmering hint of support goes a long way in these difficult times.
Posted 4/5/2014 9:05 AM (GMT 0)
Hi JK, my first wrap was a 360 floppy wrap I was told but I had no manometry carried out,its not that the wrap was done too tight,it was just not working properly with my motility problem.
I felt a strange pressure at the wrap site not so much pain,i was burping a lot which I was later told was from my esophagus and not my stomach,but the worst symptom was nausea which was constant.IT did feel like I had reflux but this was due to food and liquids not clearing the esophagus properly.
I don't know if this helps you or not? Barry
Posted 4/30/2014 3:55 PM (GMT 0)
Just had another(!!!) barium swallow, and they said the results indicate normal clearing of food and a fully functional wrap. I feel like I'm the boy who cried wolf to them, but this is absolutely wrecking me. Going to push for a motility test next, but I'm wondering if that'll indicate much of anything.
I've also been prescribed Trazodone, which may be helping (it's too soon to say, given the general nature of upswings and downswings in the problem itself), but it's putting my head in such a fog that I'm a complete wreck at work and am worried about biking to and from.

I logged the symptoms on a spreadsheet for a couple weeks, noting the time of the symptoms, their intensity, and when I ate in general. There was no real correlation between eating and the pain. For the most part, the symptoms were like a nausea or irritation in my esophagus, along with occasional hypersalivation or dryness. Antacids and PPI's didn't seem to have any influence. It's driving me absolutely mad. I'm not sure what to ask or suggest to the doctors that I haven't already. My esophagus simply feels broken.
Posted 5/5/2014 6:49 PM (GMT 0)
Went back in today and the surgeon said the wrap is good so it must be esophageal hypersensitivity, a kind of functional disorder of which neither him nor my gastroenterologist can really figure out. I've been on most of the medicines they use to treat this, so I'm slowly running out of options.
I feel awful for my girlfriend who must realize that, beneath it all, I'm slowly letting go...
Posted 5/5/2014 8:07 PM (GMT 0)
Hi jk, just wondering about the mesh was it biological mesh which is absorbed or non absorbent mesh . I was wondering if it is non absorbent would the mesh be causing you pain? there are some instances of this happening ...
Posted 5/5/2014 8:51 PM (GMT 0)
No, it's biological mesh. In truth, I couldn't even say if it's too tight or too loose or just right. At this point, it's just... pain.
Posted 5/6/2014 8:44 AM (GMT 0)
JK, I have heard that anti-depressents can be effective at treating esophagus hypersensitivity. I am on them and my esophagus feels a lot less sensitive now than a year ago, but I also think I have less reflux so not sure why it got better tbh, but worth a try especially as your mood is probably getting very low I guess.

Someone mentioned amitriptyline, that looks like it could help, I may as to try that out myself for my sensitive stomach.
Posted 5/6/2014 4:09 PM (GMT 0)
Yeah, I think a low-dose of amitriptyline was one of the first ones I tried after the surgery. Now I'm on a stronger anti-depressant that, ironically, seems to depress me (or maybe it's just that I've been in pain for most of the past 3 years now). There's been talks of trying other muscle-relaxers/antispasmodics again, but I've already tried a number of them. I've been on so many varieties of pills that I really can't imagine anything suddenly doing the trick where all other similarly applied prescriptions have somehow failed. Part of me feels like there's something physical that could be corrected surgically, but that's a tough sell when your doctors say they've already done their job correctly on the surgical front.

I may have another manometry test coming up, but the doctors aren't too confident in finding anything considering how well the barium swallow went. I almost wish my symptoms were consistently awful all the time so that these tests could see what it's like at it's worst. For better or worse, though, the symptoms wax and wane unevenly. Just having to wait to go to the doctor or surgeon, get a test scheduled, and go back in to review the results, get scheduled another drug that doesn't work and being told to suffer through it for another month... it's really taking its toll.

I've been enduring this so long under the hope that my health will eventually be redeemed. With the outlook starting to suggest that this decline won't be improving, though, one must wonder how to resolve a fruitless situation.

Post Edited ([J.K.]) : 5/6/2014 10:18:24 AM (GMT-6)

Posted 5/21/2014 6:51 PM (GMT 0)
Well, the last few days have been severe. My chest has been so bad that my head is just swirling with pain. I'm really having a hard time dealing with this, and I'm generally very tolerant of pain and discomfort. I'm scheduling a follow-up appointment, again, but I don't know how to get them to take action... no pills I've taken have yielded positive results, and I can't keep enduring this. It feels as though future keeps narrowing. I've been tempted to go to the ER these last few nights, but save for a hefty bill and a referral to see a specialist, I know there wouldn't be much resulting from that.

The notion lately is that perhaps it's esophageal hypersensitivity, which feels like a doctoral white flag and I really don't buy it. No medication has changed it, and my symptoms have only gotten worse. Has anyone ever had an exploratory surgery for this sort of thing? Would that be able to indicate anything? I'd rather go out with a bang than endure another month of this ineffective waiting game.
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