Barrett's Esophogus,2 Bravo tests, Nissen Fundoplication Sx WITH LEAK (Rare), LPR with MTD no better

I am new to the forum but starting to be a pro about reflux disease. I just turned 40/female etc. In early 2011 I started getting really sick and couldn't keep any good down and lost over 25 lbs in a few months. My GI doc did an EGD and Colonoscopy in Aug 2011 and biopsies came back Barretts Esophagus Disease as well as atypical changes in my stomach lining too. We did a 48 hour Bravo after that in Nov 2011 in which my results were off the charts so I was immediately scheduled for a Nissen Findoplacation with Hernia repair Jan 4 2012.

1 week post op I couldn't take deep breaths so we did a chest X-ray and I was borderline phemonia. 4 days later I sat straight up in bed and knew something was wrong and went to the hospital. I was in so much pain my entire torso I can not even describe it. 7 times worse than kidney stones. After millions of tests and the docs can't figure it out I was admitted. 24 hours later on heavy medication they do another CT with oral dye contrast and there it is, 7cm hematoma near the Nissen wrap. However once in surgery its not a Hematoma its a bacterial staph abscess due to a leak.

I was in critical care for about a week with infectious disease etc.

I got better however in Aug 2012 all of a sudden I started having severe chest pains when swallowing. Another 48Hr Bravo positive for chest pains 100%. They think the scar tissue around the wrap from the leak is squeezing the opening.

Jan 2 this year, EGD with Dilation to see if it helps with the chest pains and it did.... However after my consult with my Voice ENT I was diagnosed with LPR as well as MTD too.

Put back on Nexium twice a day , I go horse, clear my throat all the time, its bad.

The tension is so bad in my jaw area, clearing my throat etc all the time they decided to do a 24 Hr restech monitoring in which I get it out today.

(Basically all this before 40 years old and athletic and petite as well as I never knew I had reflux in my life)

I know its going to be positive bc of my symptoms but what else is there left to do to help me and prevent Dysplasia and more erosion ?

I'm not your average reflux patient. I'm in that classified 1 in a million section.

Post Edited (Loviedovie) : 5/8/2013 2:46:49 PM (GMT-6)

Hi Loviedovie,

Wow.  You had a rough time...as you said, you had that one in a million complication that has caused you all kinds of problems.  It must have been very scary.  Glad they got things straightened out, but you're still not being helped.

If the scar tissue is causing problems with the wrap, have you considered having the wrap taken down and redone? I know that you went through so much with the surgery it's probably the last thing you want to do, but it might be an answer.  Redos are more complex, so often people seek out specialists who do many redos/fixes of other surgeons' failed wraps.  It's a thought.

For all you've been though, you've got a great attitude.  Hang in there!

Glad you've joined the forum!

Good luck!

Denise

Hello, (Old forum name Loviedovie), I must have forgotten it and now it's Noanannuck.............. But I am just seeing everyone's replies from LAST YEAR on my situation! Thank you so much! I had no idea I had replies because I don't use forum's much and clearly didn't know how to do it. I found it by googling my Nissen Leak and found my own posting.

Update to speed, the throat, LPR, has gotten a lot better with the 1 dilation I had by my GI. I was good to go for about 7 months, then started having severe gastric bloating, gas, abdominal distention (HORRIBLE-I look like sponge bob when it happens). It's been going on since Aug-Sept 2013 and hasn't improved. I look like I swallowed a pillow (Basically what I looked like after the Nissen Leak with my upper abdomen/stomach distended from the base of my breasts to my waist basically. It's horrible. I take every gas, beeno, you name it to try to keep it down or from happening on a daily basis.

I finally had a repeat EGD but the NEW doctor/hospital did not do what they were to do and that was to focus on my stomach distention, but instead told me that I have Barrett's and did 4 biopsies on my esophagus only, nothing from my stomach. It was a total flop. I woke up crying because the total minutes (I work in surgery) was 4minutes!!!! I asked in Post op when I woke up because I knew something wasn't right. Turns out it was a teaching hospital therefore they allowed the resident to do the procedure! I even asked them to take me back and do it again while I still had my IV in! That clearly didn't happen. (I had to do this because my insurance Cobra had expired and my new coverage didn't kick in till this year).

They tried to put me on Reglan, but I started to have immediate side effects, so off that within 1 week. Once my insurance kicked in, I went back to my GI for consult. He was floored to say the least. Since we had no camera views of my stomach or biopsies, we were back at square (literally) one. I had pictures of what my stomach looks like when it is distended and he is concerned. He put me on a round of Cipro just in case I had an bacterial infection in my stomach, but my symptoms are still just as bad.

I can't sue the general surgeon, I work in the industry, he is a well known surgeon, never had this happen in his entire career and friends with surgeons I know and see. Hard place to be huh?

My question now is could the leaks created enough scar tissue damage/buildup in my abdominal region or created a possible LARGE hernia? I'm going to request a CT of the abdomen which I guess would show that.

I sleep on a heating pad on my lower back now because of the constant pressure, I am miserable. The other problem is I can't find any literature of my situation on the net at all. Nobody or any case to compare it to.

I don't wish this on my worst enemy.
Your thoughts?

We have known I have had severe reflux since 2011 hence why I am in this boat.

I don't know. I'm afraid in a way but something has to be done

Our stories are different but similar in many ways. I admire your courage. I am also at my wits end. Please keep posting how you are doing.

Loviedovie

I had a similar situation with my 1st redo. except when they took down the wrap the sutures where in a tough spot and they had to put 2 holes in my stomach. They didn't leak while I was at the hospital, but did the day after I got home. I ended up staying at the hospital for 3 weeks on TPN and not able to eat or drink until they closed.

I also had an esophagus tear that wouldn't stop leaking after surgery to fix it. Few months without eating and aggressive approach with a stent to gt it to scar over.

I had a lot of scar tissue when I had my last redo and I haven't had these issues as you have, but mine wasn't the wrap itself that scarred. I wouldn't think the hernia would return, but it may be the scar tissue is tightening the wrap and causing the bloating.

When I needed dilaton it took 2 or 3 times before it held. It's possible that is what is needed again.

Take care,
Bill

I too am shocked they haven't already done this. It's the best test to see what is going on after this surgery.

I have completely lost count of the number of these I have done with the surgeries and torn esophagus. I feel this will give you and the doctor a much better idea of what is going on.
Just proves that not all doctors are created equal. Prayers they find out what's wrong and can repair it for you.

Take care,
Bill

Results: "the wrap is seen at the esophagogastric junction. During the course of the entire study, the patient had herniation through the wrap consistent with a small sliding hiatal hernia!"

Guess I'm going back under huh? I'm so upset. It's been 2 years since the original nightmare.

I've been told I need to have the wrap redone. (Taken down and redone). Has anyone had their Nissen redone?