Chronic GERDs with multiple Lap Nissan failures

@barbwhc

I had my Nissen in 2000 also. It started slowly failing and I had to have a repair done in 2007 (by a different surgeon). Stomach pain was almost unbearable after the repair surgery. He said my problem was I was fat and he did nothing wrong, I was fat .. I tried to lose weight and it just would not go much of anywhere. I went from heaviest after the original Nissen at about 195 pounds down to 180 at the repair and then to 173 in 2012. I kept hanging in there bearing the pain .. I am not sure how I did.

I saw a different surgeon at my GI doctor's insistence in 2012 after the pain intensified and he did a bunch of test. My stomach was pulled way up into my chest by a giant hernia (I cannot remember the exact size) making it hard to breathe. .. the surgeon also said he thought my severe pain was from the mesh used to anchor the wrap in place. The surgeon did another test and said I needed surgery, but he would not do .. he said no doctor in our town could fix it even though they will say they can. He said I needed to go to the Mayo Clinic where surgeons are trained to fix other surgeons' mistakes. I was down to about 135 pounds by this time in Mid November of 2012. I kept vomiting. I iept bthat up and weighed around 120 pounds. I had just recovered from Morton neuroma surgery I had in April. .. It always seems to be “what next” when I am about over with something else.

The surgeon referred me to Mayo Clinic in Jacksonville FL I think that was January or February. I only had Tricare insurance … my husband is retired Army. Mayo accepted it, but my part out of pocket was more. The doctor wanted me to eat lots of eggs and other protein before surgery. My insurance declined the surgery ... the plan was a repair of the wrap in June. Tricare does not have a doctor they can just call and talk to and show the need for the surgery. It was outsourced to a private company. Is was September before approved (I think… I don't have my records in front of me so might be off on dates some). I had surgery finally mid October of 2013. The surgeon said he was shocked at what he found. Mesh was embedded into my fundus… top of stomach where the wrap goes around. It had damaged it too much to do the Nissen repair. Surgeon removed the mesh and part of the stomach. He repaired the hiatal hernia best he could. I was in hospital a few day and before I left I could tell the hernia was already pulling my stomach up. .. a swallow test showed it.

The surgeon wanted me to have a swallow test in April 2014. I did. The radiologist who is a doctor .. asked my husband to come in the room and he showed us how bad I was and result were sent to the ordering surgeon at Mayo. This surgeon had left the Mayo Clinic and I was not notified of it and we waited on a reply for .. I think .. 10 days and we called. They assigned me a new surgeon. .. Dr Bowers. He explained that it would be foolish to try and repair the hernia the standard way again and said he would do a Roux-en-Y Gastric Bypass .. with a twist, which I don't know what the twist was, just something different .. and it was planned. Again for June and it got delayed again because of insurance. I could have had the surgery mid September, but my granddaughter was due to be born on the 18. I had the surgery 10 days later.

Another “what next” happened. There was a 1% chance of my esophagus shortening during surgery. It did and when it did it brought my stomach, the hernia and one loop of intestines into my chest and shredded my diaphragm where they had anchored the hernia. They repaired me best they could . I was getting too weak for total repair. I went home with feeding tube right before Thanksgiving. The plan was to finish the repair in about six months. My body did not want to wait that long. The first week of March I was in my hometown and our 2 year old granddaughter was visiting with us. She and her Poppy were having fun, but I was miserable all day. Our son & family live about an hour and a half drive from us and we were to meet halfway to return our grand. I told my husband I needed to go to the emergency room around 3 pm and grand was suppose to be with us until 5 pm. He called his sister to come get our grand to meet her parents. I got out of the emergency room after midnight.

CT scan showed two more loops of intestines had come into my chest and had collapsed my left lung. I was sent home with pain meds and orders to call my surgeon at Mayo as soon as possible. My surgeon was out of country when we called, but got an appointment with him the following week. He said I was not in distress now physically .. I think I was a mental case. I was coping with the pain and discomfort okay. He said it would take a few weeks to make a plan with a thoracic surgeon (I had to have open surgery and thoracic surgeon took care of the lung .. he had to work close to my heart) and book the OR and staff .. I was to let him know if I got worse. I had the surgery 18 May 2015. Both surgeons said they had not experienced anything like it .. things just fell into place during surgery .. they thought it would take about 7 hours and it took a bit more than 3 hours. I continued with the feeding tube until late October. My esophagus does not work at all. I swallow .. my throat spasms and food goes down my esophagus. The sphincter into my stomach does not work all the time. Food will stack in my esophagus until it opens or food just auto comes up. I go ever year or so to have my esophagus dilated

There is a 99% chance that your surgery will go as it should when you have it. There are side effects that you need to be aware of so read up on it. It is the only next option I am aware of but the medical world is always changing.

You may have to call your insurance and explain more of what is going on. My husband did that for me to help get the ball rolling, but it still took awhile. You might have to pay more out of pocket.

Advocate for yourself and if you are like I was and not able to have someone do it for you.

My story is not the normal .. nothing the surgeons or anyone else at the Mayo Clinic are responsible for what happened during my surgeries. My body is just going to act up and give me lots of “what next” moments to keep life interesting. I am blessed to not be bored. 🥳.

ZeeGee

Thank you for your reply. I am exploring Mayo as an option plus another source. It’s frustrating that they only see the insurance codes and not the people.