My journey through nissens and esophageal tear

Thought I would post my journey over the last 5.5 years

Well that's an interesting story, kinda long too. Here goes.....
I had my first nissen 6/6/06. After about 3 years of dysphagia and about 15 dilations with no help I was referred to Loyola Medical Center in Chicago. I had all the same initial tests and the finally found an abnormality on the 4th barium swallow, but they weren't sure what was causing it. After my wife and I insisting on having something done my surgeon decided to do an exploratory surgery. So on 5/18/09 I had my first redo. While in pre-op he asked me what I wanted him to do if they didn't see anything wrong or if they did find something wrong. Since he is a very experienced surgeon on nissen redos I opted for him to do what he would want done if it was him on the table. After waking up he said he was very glad we kept after him to do the surgery because it was done incorrectly and was at a 90 degree angle at rest. No wonder food was getting stuck. Since it was done wrong it took almost 6 hours to redo it and I found out he brought in a lot of surgeons in training to see what not to do. I didn't ask enough questions of my first surgeon. I just asked if he could do it and he said sure. Since he had removed my gallbladder a year earlier I figured he could do it with no problem....WRONG.

Anyway, had some complications from the tough time they had undoing the original nissen. But after 3 weeks or so I was good to go. Everything was perfect for almost 2 years. Then I had a follow up EGD to check the Barretts and my esophagus was torn by the scope. That was 2/28/11. I was sent to University of Iowa hospital and had surgery to repair the tear. When I had a barium swallow to see if it held we found out it was still leaking. They put in an esophageal stent, used to open the esophagus when there is cancer there. When they rechecked it, it still leaked. The barium was following the stent back up to the hole and coming out. The decision was made to remove my esophagus, but just before surgery they decided to advance the stent through my LES into the stomach. This time noting followed the stent up and out. They tried feeding me with a regular NG feeding tube, but when my stomach filled it followed the stent up and the food came out my chest tube. Back to square one. Another surgery to remove my esophagus was scheduled and 2 hours before surgery they changed their mind again and decided to put in a feeding tube through my belly and into my small intestine. This worked great. After 1.5 months with the stent in place the hole finally closed up.

In June the hole opened back up and I spent a week at Iowa City and 2 weeks at Peoria. It was then found out my LES was wide open and during a barium swallow the barium actually bounced back up into my esophagus.So after waiting 6 weeks for things to heal more I had my 2nd redo done open this time. On 8/24/11I had my 2nd redo. It had to be done open so they could take down the scar tissue to ensure a tension free wrap. After surgery my surgeon told me the wrap was completely torn apart. This was from the esophageal stent being through my wrap. Bad thing is I asked if it would damage my wrap and the surgeon at Iowa City told me "no". I couldn't see how a sprung open tube wouldn't do damage, so I was expecting it to be damaged.

Surprisingly the open surgery was my easiest recovery of all 3 Nissens. Seems strange, but it's true. all is basically going very well. I can eat about anything I want. No heartburn so far. Do still have some sternum pain from them torquing up in my rib cage so he could get his hands in there, but it's getting better every day.

Take care,
Bill

Ps. My new GI doc told me I should write a novel on all my issues and experiences the last 5 years. Or at least write a blog on it. I told him I was a moderator on this site and he told me he was happy there is a site for support and was happy I am so involved with it.
Oh, he also was at Iowa City while I was there. He just finished his training there this June and knows all the doctors I had there very well. Kind of strange to have a doc who was there the whole time I was there.

As of 2/8/12 No heartburn and I can eat anything I want. Much fewer days of nausea also.

Bill, I joined the forum recently and just read your post about your NFP surgeries and redo’s. Thank you for sharing. You mentioned that you were in Peoria, was the surgery done in Peoria? I am asking because I am considering a redo and it is with the surgeon who did my NFP about 10 years ago, in Peoria. Just curious about how you ended up in Peoria and why. Thanks for sharing.

hi bill,

thanks for sharing your story.

did you ever get discouraged after all the set backs? and how did you cope with them.

how does one find a good surgeon anyways? its not like there reviewed on the web or something.


hope your doing well,

-Jesse

Jesse-

I did get discouraged at times, but tried to take things in stride. Got a lot of help and support here also. Mainly I learned to take things one day at a time and deal with that day on it's own.

As for surgeons, I made a bad decision for my first nissen and got lucky to have had a very good surgeon who did surgery on my lung. He has great connections and referred to a surgeon who specializes in difficult swallowing problems and nissen redos. I had my local surgeon do my 2nd redo. He did a great job, but I already knew how good he was from my lung surgery.


Take care,
Bill

Hey guys, bassically i have had all the tests done Endoscopy, bravo study, barium swallow but according to these tests my hiatal hernia surger is still in tact. HOWEVER, all the symptoms are back and I am regurigitating and having deep belches unlinke i before when the surgery was working, oh and of course the dreaded burning sensation is back as well. This is all abosultelty terrible and i have lost about 15 pounds. The doctors keep giving me the run around.

------Essentially its not doing its job anymore it feels looser, but I can't seem to prove it everything easily comes back up now. I'm in need of answers here any surgeons or extreme specialty groups that deal with this unique issue?? Please help!

I wanted to give an update to this thread.

It's been 13 months today since my last redo and all is well. I am able to eat anything I want and have even had a few bears and a bit of moonshine too. . I do have food hang up once in a while, but usually that is my fault for going back to old habits of fast eating.

If I ever need another redo I will be asking for an open surgery again as it was much easier for me to recovery from. I didn't have the shoulder pains or the lingering pain at the left side rib area I had with the 2 lap surgeries.

Take care,
Bill

Jonh71-

The issues with the lap like shoulder pain, sore left rib area, dumping syndrome from gas pressure on intestines were not existent or very minimal. I did have a wrap that went around my belly to keep the muscles tight and made it easier to get out of bed and chairs. Sure the hospital stay was longer, but my over all pain during recovery was actually less than my 2 lap nissens.

I know it sounds strange, but for me this is how it was. As for the eating recovery part it was the same with both.

Take care,
Bill

My self I wasn't up to long drives for about 6 to 8 weeks. Short drives were alright, but anything over 30 minutes was tough.

Take care,
Bill

Yolee-

My belief is that my GI got in a hurry. Also he was kind of new. His father was my GI doc, but retired and his son took over, so I started seeing him.

Now I also had many other issues that probably made my esophagus weak. I have had about 15 or so dilatations and have very bad uncontrolled reflux for many years. I am not quite the normal case as far as the esophagus goes.

Take care,
Bill

Yolee-

The nurse is right. If you have a tear most likely you would have unbearable pain and a very hard time breathing from the pain. That was my experience. I started out with the usual sore throat type pain and took a nap. I woke up 30 minutes or so later and had worse heartburn and took antacids. I did this wake up and take antacids every 20 to 30 minutes for about 3 hours. Every time I woke up the pain had spread across my chest. By 3 hours after the scope I had severe pain all the way around my chest and could barely breathe from the pain.

My tear was the size of the end of the scope, not very big at all, but I knew something was way wrong within 2 to 3 hours. I think you may just have a hyper sensitive response to the scope and biopsies, but keep in touch with your doctors if it doesn't go away soon.

They can tell if it's leaking with a barium swallow.

Take care,
Bill

pennie-

Shoot me an email and I will give you his info. I prefer that way. My email is under my user name and on my profile page.


Oh, As an update to this, I missed non's response about the EGD tearing my wrap. My wrap wasn't torn by the scope just my esophagus. My wrap was torn apart from the esophagus stent they had to use to help the repair from leaking. Sorry if there was some confusion.

I am also officially 2 years and 3 days post redo. No reflux to mention and I can still eat and drink anything I want.

Take care,
Bill

Bill,

Hello, you helped me post op a few weeks ago. I was suffering from some bad loose stool which did clear up. I am 6 weeks post op today. Everything was going so well. I was sleeping without snoring and coughing. I did not hack anymore in the AM. I felt rested. I was eating all sorts of things without issue, I can burp, and I never had an issue with swallowing. The last couple of days have had me worried. I have had my old symptoms back again. I wake up with my upper throat hurting/burning. It lasts all day. My tongue is getting that white fur on it again as well. I do not usually get the standard GERD symptoms of burning lower, but as I type this when I swallow my drink it is burning going down. Is this normal? Does this mean the surgery failed? I don't understand how I was doing so good then bam back to how I was before. I must admit sitting here I could cry. I don't think I have it in me to live with the acid again or re-do the surgery. I called my dr and the RN said I would have to come in and see the surgeon. She acted like it was impossible it was the wrap. She also said to not take anything OTC. Im temped to take the protonix again and see if it helps. I also think that maybe the wrap was too lose if I could swallow so easily right away. I just don't know what to do. I want to just curl up and go to sleep, I am feeling way to hopeless. Thanks for your time.

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