Para esophageal/hiatal hernia surgery

Hi, Sandy! I also have a para esophageal hernia. I guess, by the size of it, I've had it for years although I feel no heartburn. I did find out my anemia, and maybe even asthma is a symptom of this type of giant hernia. My surgeon and primary care doctor strongly advised me to have the surgery as it can be life threatening to NOT have it.

Now that I've decided to go through the surgery and have it scheduled for December 13th, I am really hoping it solves some of my other problems. Of course, I'm a little nervous. My primary care physician told me it was a difficult surgery, a difficult recovery but would be well worth it in the end. I hope she is right.

Best of luck to you! Starry

Sandy,
Do you know when your surgery will be? I will definitely keep you posted on my surgery. What part of the world are you in? I'm in Southern California.

I accidentally found out about the hernia years ago when it showed up in an x-ray. The doctor was shocked and said it was enormous. The surgeon I was referred to said he didn't repair hernias because they just come back. Now, several years later I am with a new medical group and the doctors feel quite differently. If I had known anemia and asthma were related to the hernia I would have pursued getting treatment long ago. I was in need of a transfusion when they discovered anemia. Still, the doctors didn't tell me the connection. I found that out by reading. It is frustrating not having more information. I guess the bottom line is you must always be your own advocate. Be proactive.

Thanks for the good wishes,
Starry

Hi Sandy and Starry. Welcome to the forum.

I had a giant paraesophageal hiatal hernia (GPEH) due to a car accident. My seatbelt pushed my stomach up into my chest where it got stuck. That was a couple of years ago, so I've been through what you can expect to get. It's not fun, but it's lifesaving surgery, critical to get done ASAP.

I posted tons on the forum as I jumped through the hoops, went through the surgery, recovered. I'm a senior, so it you are younger you will do better. Don't get too hysterical when you read my posts. But it's a lot longer surgery (mine was 4 1/2 hours) because of having to take down the stomach so much, and it's right next to the heart, separated only by a thin membrane.

My surgery was done in a large university setting, and I would not go to anything less. It doesn't matter if the surgeon has done lots of trgular ops, just if he's done a bunch of GPEH surgeries and has a good team. I had a Toupet procedure because I have a very weak swallow due to having polio as a kid. You might be able to tolerate a regular Nissen, but make sure not to skip the testing!

To read the info already posted, please put various keywords in the search box at the top of the page. paraesophageal hernia, GPEH, stomach in chest ... You can also look up just my posts by clicking on my name, then go to the older posts for the stories. I've posted links to some informative websites too.

Best wishes.

Hi Alcie,

Me again! When I clicked on your name, only the last ten posts came up. How do I view the older posts?

I too, had my whole stomach in my chest. Had some symtoms while eating more than a small amount at a time. No heartburn, just pain and pressure. I had the surgery and also a wrap last year...it only lasted a couple of months. Then alot of different symtoms. I wasn't told how long to eat very carefully, and vomited, which I think messed it up.

Finally had it redone two weeks ago. I pray it lasts this time. The surgery itself is not bad at all, altho the second one was harder on me(I am 72). Both Drs. said they had a hard time with it. I felt good this last year, but was constantly belching up food that never made it to the stomach!!! Had a huge hiatal opening.

I was very weak and tired the first week, and food has gotten stuck two times. I now know that it is swollen inside for a long time.I wasn't told what to expect with the first one, but this time, I made it a point to know about recovery, as that is the worst part of it all.

I got heartburn after the first surgery failed and had to take Prilosec. Now, I haven't had to so far...

good luck to you...

Hi, All!

Sometimes I think the doctors we speak to don't know of all the complications and symptoms of this kind of hernia. I read that about 40% of people with para esophageal hernias have anemia. Also read that many breathing problems cleared up that were not previously attributed to the hernia.

My surgeon has given me NO information about pre or post op. His nurse told me to not take aspirin the week before surgery, nothing after midnight and show up at 5 am. I'm a bit concerned because I will be recovering alone in my 2 story house. I would like to have as many things (liquids, meds) ready as possible. I've read a lot online about what to expect after and have found the instructions most helpful to me from UCLA. They seem to be very explicit and conservative, which I think is a good thing. I am going to err on the side of being too careful so I, hopefully, won't have any complications. The link for UCLA instructions, a pdf file, is esophagealcenter.ucla.edu/workfiles/surgery/nissen_gerd.pdf

I will definitely keep posting to let you know how it goes. I am continuing to read and learn. I want to be as educated and prepared as possible.Knowledge is power, right? Ther is also a support group on facebook I have joined that has a lot of info and stories. If you are on facebook search for nissen fundoplication. It is a closed group but you can request to join.

It's good to hear from people going through similar things. Thanks so much!

Starry

The UCLA link has information about post surgery diet. It looks like the first couple of weeks on liquid only, the next couple of weeks on thick liquids, the next two weeks on soft food and not back to a normal diiet until about the two month mark!

I hope to meet the dietician or nutritionist at the hospital before being discharged. Also tells not to lift anything more than 2 lbs and no bending or twisting of upper body. There is such a lot of good information on this site.

Hi Starry,

I have been thinking of you as I know your surgery is coming up very soon. How are you feeling? We are leaving on holiday the day after your surgery but I will try to check the board in case you feel like posting. You may need a few days before you actually feel like writing!

Best wishes that all goes very well and that your recovery is quick!

Sandy

Strange that your daughter is coming from Hawaii as we are going there! How nice that she will be there to look after you!

My surgeon told me that "you will be amazed at how much better you will feel after surgery". I hope it works that way for you.

Talk to you later.

Sandy

Hi Sandy!

I hope you are enjoying your cruise. Despite my nervousness, everything went great! My surgeon said it couldn't have gone smoother.

I woke up in recovery feeling quite nauseous and told everyone around me I was going to throw up and they put meds in my IV right away. Then I felt pain (felt like I'd been run over) and they took care of that. I learned, in my hospital, they don't give pain meds unless you ask for them. I slept much better and could maneuver more easily with the meds. I had pain under my clavicle from the gas they put into you during surgery. I asked my daughter to massage that area and it helped tremendously. Coughing from chest congestion (asthma) was much easier if I walked around and coughed standing. It took the pressure off the incisions by standing. I took my inhaler to the hospital (as instructed) and used it.

I could have no liquids after surgery and had bad cotton mouth. Ask for sponge pops which were like liquid gold. Day 2 I was allowed clear liquids and day 3 I had full liquids. No problems at all. I'm not really hungry yet so I've forced myself to try a little of everything but warm liquids are definitely more satisfying (warm tea and broth). I was 2 nights in the hospital and ready to come home. Sleeping in bed didn't work (too painful- pulled incisions) so I slept comfortably in an extra wide overstuffed chair with lots of pillows and an ottoman. I sleep in a gown but wear yoga pants during the day. The soft, wide band gives gentle support to the incisions. I can't wear a bra because 3 of the incisions are right under my breast.

Overall, I'm just so happy to have this behind me and to know it's getting better everyday. Hopefully, the info has been helpful to you. I know everyone's surgery and recovery is different but it helped me tremendously to know what MIGHT happen and help.

Enjoy Hawaii!

Starry

Hi Starry,

We got home today and I read your posts. So happy that everything went so well and that you are feeling good!

Thanks for letting me know about the rechargeable hot pad/pillow. I use Magic bags but they only keep me happy for 10 minutes or so.

My surgeon told me that I need to take my Bipap machine to the hospital and I am wondering how I will use it with tubes in my mouth or nose? Did you have tubes overnight?

On Monday I will need to call his office to let them know that I am back in town. Still don't know when the surgery will be but at least I got to go on my cruise - and it was wonderful! We are tired from travelling so now I will be happy to stay home, diet (!!!), and then face surgery.

Sandy

Hi, Sandy! Welcome back! It sounds like your cruise was wonderful!

I am over 3 weeks post op and still doing well. I feel like I could eat almost anything, and my surgeon said to go for it, but my primary care doctor said absolutely not so I'm still eating "bland and mushy" which is fine. I had lasagna on Christmas Eve with no problem. Luckily, I've had no swallowing difficulty and nothing's felt stuck. I still have a lot of pain in my middle but I don't need meds for it. Bending is impossible and I can only sleep on my back.

I didn't have any tubes except for oxygen while in the hospital. I had a catheter the first 24 hours and an IV, of course. Also a blood pressure cuff and pressurized boots. I'm still using my inhaler so I don't know if the surgery has helped my asthma. It's probably too soon to tell.

Something else you might want to think about getting, if you don't have one, is a tank top bra, or at least a sports bra. It drove me crazy until I found an old stretched out bra I could wear when I left the house the first few days. You may not feel the need to go out but I was Christmas shopping less than a week after surgery. I took a lot of breaks and was fine. It helped me to get out and not feel like an invalid.

Keep posting about your experience and when your surgery will be. Best of luck!
Starry