Post-Nissen, need support

i had similar problems and they did a barium on me post op the doc was sure reflux was gone but the barium says otherwise. for me ive decided to stay on ppis and im eating pizza, burgers, margaritas, it is no different than eating oatmeal. i decided why eat bland foods if there is no different. i know your frustration and for me i could not lose much more weight. i eat normally now but still take 2 ppis a day. i followed the rules and my throat too still seems the same. i would ask for some tests to confirm things. I am stuck now as my tests still show reflux..very frustrating. if i were u id get the tests and go from there. my surgeon says there is nothing he can do for me

i would think a negative barium would be great. like i said mine showed reflux so while i dont have the side effects as some do i still have the hoarseness, and like u i have constant mucous in the throat. honestly i think these docs really guess a lot and every surgeon is so different. hang in there i had to get anxiety meds which hurt reflux but i was so anxious but like many i think i needed the surgery but wondered if it would help. so far its like no real changes.. but have them look at the wrap via egd take pics have surgeon look. my situation is weird as i need a redo, but they arent sure if it will help. i hated the first 2 weeks after hate to do it again.. get tests done get another opinion if necessary

let me know. i was told people like u and I dont respond as well because we need total acid suppression and even the best surgery does not do that. my gi says the ents are idiots ill have to live with this forever. i believe my throat got so bad before they caught it..i complained for 2 years some of the damage is irreversible. my larynx is badly burned so i reckon its like barretts but in the larynyx not esophgus, i reckon someday they will label the damage thats possibly irreversible.

Honestly you guys are really freaking me out. Denise what do you mean by "my very irritable stomach/wrap"?

Things are still tough & confusing. I think everything still needs time to click into place. Some days I feel better, but I still get heartburn. Monday I sang well, better, but then I got hoarse from acting class & a night out. So I haven't been able to judge until that's healed; my singing hasn't been right w the hoarseness. I'm on voice rest, I don't know if the PPIs help or hurt. Waiting to see.

Hi scazzasofija,
Good luck with your healing. It's tough when your voice is your job. I just retired from teaching, and I found the hoarseness annoying because it made it difficult to read to the kids, and I love using music with them, and my singing became impossible.

I truly hope that your voice improves very soon. I would guess that the PPIs are worth using just in case they help. If it's bile that is your problem they won't help, but I would still recommend you take them.

You need to give your recovery some time, but in your case I think would be reasonable to expect some testing to see if you're actually getting reflux sooner than in ordinary situations. Your voice is too important to you.

A second opinion might be in order. You live in NYC as I recall. There must be tremendous medical facilities for you there, so while I encourage you to relax and give yourself time, still, you need to be your own advocate.

Best wishes,
Denise

Hi Rummaan,
So sorry to hear you're still struggling. I would only say this--get a second or third opinion. If the surgeon you had did not do a job that you feel worked out, it makes absolutely no sense to go back to that same surgeon. I don't know where you live, but could you make it to a center like Mayo, John Hopkins, or Cleveland Clinic, etc? Those places tend to get difficult cases, and may be better at figuring out a fix.

I had horrible asthma for years when I finally realized that I had to give the surgery a try. Scary posts on the internet made me resist the surgical option, while I was taking unhealthy amounts of steroids to try to keep me breathing. Finally, I found this forum. Unlike others, this place is populated with members who had a more realistic view of the surgery. Is it perfect? No. Has it changed their life positively? Yes. Even members who had to get redos were still happy to have that option, because they remembered how much they suffered before the surgery.

Internet sites like this and others can scare people away from getting the surgery they desperately need. I have permanent damage from waiting so long for the surgery. While the internet is a great place to get information and prepare yourself for the surgery, it can provide a skewed view of the potential for success post-surgery.

Many have this surgery and walk away, happily living their lives. They never post online. Someone like yourself, who has had a bad experience, is far more likely to write posts that vent their (very well deserved) frustration and anger.

I wish that I had had the surgery sooner and do not have to experience the side effects (tearing skin, adrenal insufficiency, bruising) that I now have. I would have a redo without hesitation. In fact, I did recently go through manometry, EGD, and a PH monitor to check whether or not my (mild in comparison to pre-surgery) cough, is related to some acid leaking. I sought out the tests right away, as I did not want to make the same mistake I did before. By the time I had the surgery, my lungs were so bad that I coughed forcefully and constantly during my recovery period, and I have always worried I did something to damage the wrap.

I have a very reactive and sensitive stomach, which causes a problem all its own. Since my wrap is created out of that not so perfect "cloth" it irritates easily. Still, I would have the surgery again in a heartbeat, as it has made my lungs so much healthier, and my life so much better. I'm seeing the surgeon on Friday to get the results of the test. During the PH test I had absolutely no sensation of heartburn, which is the total opposite of after my pre-surgery tests. I'm really interested in hearing what he has to say.

Please seek out other opinions, and look for a center where they specialize in difficult cases.
You can find help.
Hang in there!
Denise