Very large paraesophageal hernia with obstruction

Posted by colorado5358 @colorado5358, Oct 31, 2021

I am a 63 year old female who has had heartburn for 30+ years and have been on meds the entire time to treat it. I knew I had a small hiatal hernia, but after about 24 years and worsening symptoms, I recently had another EGD at the Denver Institute of Esophageal and Reflux Surgery to see if I qualified for the Linx procedure. I was shocked to find out I have a very large PEH (5 cm), Hill Grade 4. The surgeon also stretched a stricture in the esophagus and said I most likely need surgery. Since the procedure, the heartburn is so much worse with lots of bloating and belching. I am so uncomfortable and difficulty getting to sleep at night despite taking additional meds, raising the bed, and eating tiny meals during the day, with only a light dinner at 4-5 hours before bedtime, plus a Pepcid. (I already take Omeprazole twice a day before breakfast and dinner). I spoke to the doctor and he said it was probably from being off Omeprazole for two days prior to the EGD. The symptoms continued to get worse, so I called the office again a week later and the PA said it was because the stricture previously kept some of the gastric juices down, and now that it’s been stretched, the gastric juices flow freely (my words, not a direct quote). I was at a healthy weight before the EGD and dilation, but now I’m losing 2-3 pounds a week.
The PEH weakness must run in the family, because my younger brother had a PEH 20 years ago and had the Nissan fundoplication performed by a surgeon in Manhattan, Kansas. He experienced numerous problems years later and the surgeon refused to take his calls. My brother was then told by a Gastro specialist in Wichita that he needed a redo. He ended up going to the Mayo Clinic in Rochester and had to have his chest cut open from his sternum to his navel. The surgeon said the wrap had been done incorrectly the first time and he had to undo it and correct it. It was a painful recovery because they spent four hours scraping scar tissue. Since then he’s been much better except for occasional bloating issues and stomach pain.
My brother is urging me to go to the Mayo Clinic to have mine repaired. The thought of traveling there in the snowy winter from Colorado twice (first appointment and then later surgery) sounds so stressful to me. Has anyone had a PEH repaired by Dr. Bell in Denver, and/or what are your thoughts as to where I should have the surgery? I can have the surgery done in Denver in mid-December. Also, I’m terrified of the wrap, but I’ve been told I’m not a good candidate for Linx because of the size of my hernia.
Thanks for any feedback you may have.

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I have a large hiatal hernia at 56, I have had it for many years, I have had a couple siblings have surgery on theirs also; I’m not ready to go that far but I know at some point I will need to, I just know at one point the surgery didn’t help many, but I don’t know about now.

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@munga

I have a large hiatal hernia at 56, I have had it for many years, I have had a couple siblings have surgery on theirs also; I’m not ready to go that far but I know at some point I will need to, I just know at one point the surgery didn’t help many, but I don’t know about now.

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I’d like to postpone surgery but it’s starting to affect my breathing and the pain is waking me up at night.

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@colorado5358

I’d like to postpone surgery but it’s starting to affect my breathing and the pain is waking me up at night.

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My best suggestion is to find a surgeon who has experience in and is able to do in your case a laparoscopic surgery. I had an ‘old school doc’ who did an open procedure 3 years ago and I have been sorry ever since. Best of luck to you.

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@charle1945

My best suggestion is to find a surgeon who has experience in and is able to do in your case a laparoscopic surgery. I had an ‘old school doc’ who did an open procedure 3 years ago and I have been sorry ever since. Best of luck to you.

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Oh no!

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@colorado5358

I had a very rough journey with my paraesophageal hernia. I had a Nissen in 2001 and repair in 2007.. the surgeon put mesh in a place he should not have and caused me a lot of pain. I had a referral to Mayo Jacksonville in 2012 and had an undo of the Nissen and repair of the hernia in 2013. .. the repair failed. In 2014 I saw a different surgeon than first (he had left the Mayo). Dr Bowers decided to do a gastric bypass to fix the hernia. I had complication.. not the surgeon's fault, just my body. I was on a feeding tube for a bit over a year and had to have more surgery to repair my complication and it had to be open surgery.. cut from mid breast to mid back shoulder. A more in- depth version here … but not all of it: https://zarogasnook.blogspot.com/2015/08/a-long-time-passing.html .

Don't let my journey scare you. I am an oddity. Do a lot of investigating of a surgeon. If you decide on the Nissen you want a surgeon well versed with it. Know going in that the average is that 1 in 6 Nissen surgeries fail. Some surgeons get the Nissen a bit tight and you would not be able to burp nor vomit.. which happened to my f-i-l. .. miserable when he got sick.

There are successes… it depends on two things. How good the surgeon is and how your body will react. That last one is more of a crap shoot than the surgeon.

With your large hernia you are going to have to do something sooner or later. The hernia can not only pull your stomach into your chest, but can also pull your intestines into your chest as mine did. Boy does that hurt!

ZeeGee

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@fourof5zs

@colorado5358

I had a very rough journey with my paraesophageal hernia. I had a Nissen in 2001 and repair in 2007.. the surgeon put mesh in a place he should not have and caused me a lot of pain. I had a referral to Mayo Jacksonville in 2012 and had an undo of the Nissen and repair of the hernia in 2013. .. the repair failed. In 2014 I saw a different surgeon than first (he had left the Mayo). Dr Bowers decided to do a gastric bypass to fix the hernia. I had complication.. not the surgeon's fault, just my body. I was on a feeding tube for a bit over a year and had to have more surgery to repair my complication and it had to be open surgery.. cut from mid breast to mid back shoulder. A more in- depth version here … but not all of it: https://zarogasnook.blogspot.com/2015/08/a-long-time-passing.html .

Don't let my journey scare you. I am an oddity. Do a lot of investigating of a surgeon. If you decide on the Nissen you want a surgeon well versed with it. Know going in that the average is that 1 in 6 Nissen surgeries fail. Some surgeons get the Nissen a bit tight and you would not be able to burp nor vomit.. which happened to my f-i-l. .. miserable when he got sick.

There are successes… it depends on two things. How good the surgeon is and how your body will react. That last one is more of a crap shoot than the surgeon.

With your large hernia you are going to have to do something sooner or later. The hernia can not only pull your stomach into your chest, but can also pull your intestines into your chest as mine did. Boy does that hurt!

ZeeGee

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Thank you for your feedback. I read your blog a couple of days ago and I feel deep compassion for you. What you have gone through and continue to deal with is unbelievable. Wishing you improved health and better experiences going forward.
I appreciate the information, it is very helpful.

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@charle1945

My best suggestion is to find a surgeon who has experience in and is able to do in your case a laparoscopic surgery. I had an ‘old school doc’ who did an open procedure 3 years ago and I have been sorry ever since. Best of luck to you.

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Thank you for your suggestion. Best of luck to you also,

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I am strongly considering having the repair done at the Mayo Clinic in Arizona. I seem to also have an upper abdominal hernia, Does anyone have any experience with a paraesophageal hernia surgery at this location?

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I love Dr Madera at Mayo in Arizona. However please seek out information and ask questions. These hernias are not easy to repair. From my understanding the repairs are not a sure thing. I have a hernia and severe acid reflux. I was advised to do a gastric bypass to correct the GERD. I underwent one surgery which only repaired the hernia. It has slipped and now I have been rescheduled for surgery in January.

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