My Nissen is finished - So when can I expect improvement?

I had my nissen 9 months ago and I haven't had any pain spikes from heartburn! However, my esophagus still radiates pain just as much as it did immediately after the surgery. It's not a sharp pain that has any identity or triggers that make it better or worse for a short amount of time, but it is dynamic enough to give me good days and bad days.

My throat is always in pain, always radiating that pain directly to the front of my mind, always creating so much saliva that I need to swallow every 5-10 seconds or else I start to choke, there is always at least one place on my body that is extremely itchy, and I have no idea if there is even any use in itching an itch or not since it doesnt feel good either way, I am always hungry, never get full for more than a few minutes, and I dont get to the bathroom more than twice a week no matter what I take, do, or how many doctors I see. This is quite a long list of things that immediately affect me at all times. I understand there are doctors out there that can treat some of these things, but is it worth fishing around with all the doctors that can't help me with any of these problems? I have already seen so many, been misdiagnosed so many times, and come to so many dead ends of doctors saying "I have nothing to help you" or "you should see this specialist," only to be told the exact same words about a different specialist. Does anyone here have any good ideas for me to move towards improvement in my health, or do I just have to keep ignoring all these things that constantly lie in my immediate memory?

I saw my surgeon 1 week after my surgery and he said he didn't want to schedule any more follow ups unless I needed to. I guess the way you put it, I could go back to see him, but from my experience, surgeons have a lot of medical expertise in surgery and not very much in talking to or treating patients. Both my neruosurgeon and my nissen surgeon tended to not be fond of clinic appointments and seemed to have less to say to my questions about treatment than other doctors would.

If I did see my surgeon, he would probably refer me to a specialist, likely a GI. The problem I have had with seeing doctors for GERD and eosinophilic esophagitis is that both of them are located in the gastrointestinal tract, but tend to interact with many other systems in the body, making GIs not the only specialists to deal with. For instance, EoE is a disease located in the esophagus that interacts directly with the stomach by having symptoms related to GERD, but it is also related to other completely different systems in that the mechanism that EoE acts through is entirely immunology. If I mention a breathing problem to a GI, they will first say that they think it is asthma (which I don't have) and that I should see a pulminologist and an ENT. The best part of being referred to all these doctors is that each appointment takes several months of waiting from when you can schedule them. The only thing the GIs I have seen have ever done for me is put me on PPIs and then ask me if its working. Past that, they have all agreed that they have nothing else for me short of surgery. Now that I have had the surgery, I would hate to go back to GIs and be told that they have nothing at all for me, but that is probably the truth at this point.

DSMB you have been through so much. I agree with your remarks about the doctors. The surgeon (in my opinion) should take responsibility for helping look into why you are having ongoing problems-- should not send you to someone else until he can PROVE that necessity. His job is not done -- seems like he would want to know or learn from this.

Doctors seem outstanding with trauma stuff. When one sees a doctor, he asks a series of questions and, perhaps runs a series of tests to determine your symptoms---the purpose being-- to match the symptoms with a specific named category known as a disease. They need to think outside this narrow box and HEAR and consider the WHOLE person-- yes, even if he is a surgeon. (This is my opinion based on my experience). I now educate my self before blindly following his advice.

Doctors don't seem to listen to your opinions or thoughts in trying to analyze ones illness. Even armed with a written sheet of questions, one gets interrupted within 1-2 minutes after describing symptoms. In other words, he's heard enough and already put you in one of those 'boxes' and your opinions are of no value.

I've even said I'm not through yet and he backed down and listened for a few more seconds. We've been to many disciplines and have come to pointedly asking "why are you sending me to another doctor, what is your reasoning for it--just getting me out of your hair?" (Please know that not all doctors are like this--I feel like ranting today and certainly don't mean disrespect).

DSMB. Please continue to let us know how you are doing and what you are doing. Our hearts are with you and wish you the best. This is an awful health issue to deal with. Kindly. Pat F.

Most days have been the same, but being chronic pain it gives me some good days and some bad days. All I can do at this point is continue trying to ignore the pain. Nothing else I have tried since the surgery has made any difference, even after losing 30 pounds from biking 1500 miles this summer. I also spent this summer working in a lab on a genetic engineering project that I designed, so I am getting closer to being able to research this disease on my own. At the rate that doctors have been able to help me, I will definitely be able to develop a better treatment from research before doctors can treat my pain.

I am so sorry to hear that. Could it be the eosinophilic esophagitis that's causing your pain? I've heard that doctors sometimes are reluctant to do the Nissen because pain from EE can be confused with GERD pain, and if you've not been through the proper tests to confirm that GERD is your main problem and the EE is secondary, there is a chance the surgery won't help you. Did you do all the necessary tests before the surgery and what did they say?

On my first endoscopy I was diagnosed with EE. The suggested treatment was to swallow steroids. I did not want to do that so I did some research on my own and tried an elimination diet. I stopped consuming all milk and wheat products completele up until the next endoscopy, and this time there where no signs of EE. You need to be very careful here because there are traces of milk and wheat in so many products.

On this diet my hearthburn symptoms also got reduced and the PPIs actually started working again. Even though none of the conventional allergy tests could confirm I was actually allergic to these two I could see a noticable difference

Obviously I am no doctor but it could be worth looking in to.