Everyone handles the Nissen surgery differently, and if you go into it with your eyes wide open, knowing the risks and benefits, accepting the reality of the first months of healing, and allowing yourself to heal without feeling like you need to rush it, you will do just fine.
As you've read here many times, it's very important to choose an experienced surgeon (in this particular surgery), because your surgeon, and your attitude and acceptance of the changes that occur in your GI tract, are the most critical pieces to the recovery puzzle.
I had "atypical symptoms" as well. The docs who really knew me (asthma and family) were certain that they were being caused by GERD and would be improved with surgery.
My GI doc/s went by the tests (my first 24 PH monitor was 4 and my second, 2 years later, was 14) While my GI doc told me after my first test that reflux wasn't causing my asthma to be worse, my doctor disagreed. I was in no hurry for the surgery, because like you, I'd looked on the internet and seen the typical horror stories and people warning me not to ever have the surgery.
In addition, like your therapist, my first GI doc was very negative on the surgery--saying that half the people still have to take PPI's after the Nissen, and the new procedures were untested, and it was too soon to recommend them.
My lungs (asthma is considered an atypical GERD symptom) continued to deteriorate. After more "doctor on doctor" communication, my GI doc finally admitted that probably very little acid or bile could affect my lungs, and said I could either continue on meds (totally ineffective for my asthma emergency) or talk with a surgeon. At this point, after high doses of prednosone and inhaled steroids (my adrenal glands are still not working because of it) I decided I had to talk to a surgeon, so I did. I decided that I couldn't go on the way I was, and after talking with the surgeon made the decision to have the surgery. I felt I had to give it a try. If it didn't work, then I'd look elsewhere for answers.
Unfortunately, I waited too long for the surgery and my lungs were in such bad shape that I was coughing before during (I had a nebulizer treatment just before surgery and was given asthma meds through the anesthesia tube) that I actually ended up doing damage to my wrap. My internal tissues were so fragile (from the steroids) that my coughing was able to pull something loose. Because of this, I've had some return of reflux.
That said, even with the reflux, my lungs have been better post surgery than they had been for the previous four years. I no longer had to nebulize daily, and I wasn't coughing and wheezing nonstop. In addition, I was able to tolerate viruses better (they put me into very bad wheezing and coughing before my surgery--often requiring steroid treatment).
I may have to have my surgery redone at some point because of what happened due to my coughing and steroid use.
I would give anything to be able to have acted sooner and avoided the damage to my adrenal glands and my body in general. Hindsight is 20-20, but in my defense, my GI docs did not give me any support at all, and rather, discouraged me from going forward for those four years as my health worsened.
I have a new asthma doctor now (we moved recently) and when I asked him to refer me to a GI doc, he shook his head and said he didn't like any of them. He told me that they have no understanding of the connection between asthma and GERD. He complained that all they do is "test, test, test".
The docs and surgeon told me that the cure rate for "atypical" GERD symptoms was much lower, and that while the surgery might help me, there was no guarantee. I went forward anyway, and although I've had some complications, and am glad I did. My health would be much worse now if I hadn't.
If I am recommended for a redo, I will definitely go for it. I really have no other option. My asthma doctor is trying to get me straightened around with meds, but if that doesn't work, I wouldn't be at all surprised if he sent me back to the GI and surgeon.
So, long story short...yes, atypical symptoms CAN be improved by surgery. Yes, people often need to go back on some PPI's, but even those people are most often in much better shape than they were prior to surgery, and are glad they had it.
Keep in mind that most people who have the surgery don't bother to post online. They go on with their lives, and enjoy the improvement in their health. People who had the surgery done by incompetent surgeons can have horrible side effects, and therefore go online to search for answers.
I'm not sure I would have had the courage to go forward with my surgery if I hadn't met the fine people on this forum, who presented a positive, but realistic picture of the surgery and its results. I believe I owe my friends on this forum my life!
Good luck with your decision. As Kitt said, you're the only one who can decide what's right for you. It doesn't sound like you're ready to have the surgery. If you went forward with your anxiety and negative attitude, I'm afraid you would not be satisfied with the results. You have to really want it, and be willing to accept whatever happens. You need to feel that the way you feel now is not something you can sustain forever, and whatever happens with the surgery, it's a risk you must take, because you've exhausted all other possibilities.
I've read posts here and elsewhere by people who went into the surgery thinking that they'd be made whole again and come out feeling like they did before they had any problems at all. Not so. This surgery is a fix that can create some other inconvenient symptoms. For me, those inconvenienced are nothing, compared to what I was living with before the surgery.
Kitt suggested seeing other doctors and surgeons to discuss this. Keep in mind that many have been helped with hoarseness and breathing problems even though you'll be told that there are no guarantees. There are no guarantees on anything in life. You'll just have to decide if you're ready to give the surgery a try, and accept whatever the results are for you. I didn't really think I had a choice. I needed to suck it up and see if it helped. It has, although my case is very complicated.
If I had been braver and had the surgery before I'd been on all those steroids, I would have avoided a multitude of health problems. As I said before, "hindsight is 20-20"--woulda, shoulda, coulda...it is as it is. At least in the end I went forward with the surgery, and had the right attitude to ensure a positive recovery experience.
Good luck with your decision, Joe!
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