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Paraesophageal Hernia Did you have symptoms? Surgery experience to share??

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Posted 4/4/2015 2:38 AM (GMT 0)
Hi everyone,

I'm new here but have been reading through posts ever since I found I have a PEH a few weeks ago. I've had a hiatal hernia for years but was recently scoped for constant pain when they found the PEH. My pain is almost always constant, has nothing to do with when I eat or don't, and really has no rhyme or reason. The pain for me is usually under my sternum and radiates through to my back.

I saw a surgeon today who suggested surgery as he said the PEH is moderately sized and will not improve on it's own. He said over time more likely it will get worse. I scheduled the surgery for next month and he will be doing the minimally invasive robot assisted laparascopic surgery. He has much experience with the procedure but I was very sad to hear he doesn't think the surgery will help at all with the pain I've been having.

I have avoided nissan fundoplication for years because of the stories I read on the internet (although I'm glad to find this forum) and also because my GERD has been well controlled for 20+ years using prilosec.

Would love anyones input on pre surgical pain and complications and also thoughts on surgery post surgery etc. This is all a bit overwhelming and I'm trying to get as much information as possible.

Thank you so much for any posts in advance!
Posted 4/4/2015 3:19 AM (GMT 0)
Hi Mijane,
I had a large PEH (around 9cm) that was repaired when I had a full nissen fundoplication in March 24,2015. I started having heart burn issues when I was pregnant and the reflux continued for the next 15 years. I tried all types of medications without any relief. about 2.5 years ago the heart burn settled down a bit as I adjusted what I ate but new problems arose. I was began having choking episode, not being able to swallow, waking up at night gasping for breath. My doctor scheduled an endoscopy and found the hernia which was followed up by a barium swallow. It indicated a fairly large hernia. Her response was to treat it with different meds. When I asked about surgery she said I wasnt a good candidate because I had a "curvy" esphogous. After a year of different meds and the same results I was desparate for help. By now I was getting spasms in my chest area and was having trouble with food even reaching my stomach...drinking water was a chore. I found a Dr. who performed another endoscopy and with the results recommended the surgery along with an excellent surgeon. I researched everything I could about the surgery and was scared to death of going through with it. I didn't want to trade in a bad hand for a worse one. I interviewed the recommended surgeon along with another and made my decision to have the surgery. My reasons were my hernia wasn't going to go away or get smaller and I was tired of the medicine that would make my bones ache. I was pleasantly surprised my surgery recovery has been very easy and nothing like the horrible experience I had set myself up for. I'm trying to be conservative with my recovery and taking the introduction of new foods very slowly. So far,I've not had any issues. I do need to learn how to eat slower but other than that I've had no choking problems what so ever. I'm now able to drink water without burping forever and I'm able to sleep thru the night without snoring like a bear 😄
I hope you in some my can relate to my experience and it can help you to feel some comfort In your decision regarding the surgery. I know everyone is different and recovers differently but I have had great results from this surgery without any complications thus far. Good luck to you.
Posted 4/4/2015 1:06 PM (GMT 0)
MiJane - Welcome to the forum. Fundrider had a great post. [please start your own thread too!] It's true that hernias don't go away by themselves. PEH or GPEH (giant PEH) are pretty bad things to deal with and the only solution is surgery. If you use the search box at the top of the page and put in some keywords you'll find other stories, including a lot of my old posts.

It's a bit more complicated to pull the stomach down from the chest, and it can be a longer recovery, but it's the only thing that fixes a potentially dangerous situation - the stomach can roll over and strangulate itself.

I also was scared to death when I had the surgery, but even though I had a hard time recovering because of being a senior citizen, it was the right thing to do!

I had one of the best surgeons and his well known team in a big university hospital where this surgery has been done thousands of times. It was pretty long because they have so much more to do than just a regular fundoplication. That's why you have to have a team with a great reputation for good outcomes.

I had a "Toupet" wrap because my swallow was wimpy to start with. [post-polio] Swallow won't change because of surgery. It was the right wrap for me. You want to let the doctor decide what needs to be done, not insist on some fad that is popular at the moment. That's where the testing comes in. They need to know how long your esophagus is - will it extend back into the abdomen below the diaphragm. I already mentioned how strong your swallow is. The amount of acid isn't important because this surgery needs to be done regardless of that.

Best wishes to both of you!
Posted 4/6/2015 1:19 PM (GMT 0)
Alcie,
If I may ask, what state do you live in and what hospital did you go for your surgery?
Posted 4/7/2015 1:25 AM (GMT 0)
MiJane,

I had a large PAH repaired on March 3, 2015. Tomorrow will mark 5 weeks post-op. Over the years a small hiatal hernia became progressively worse and I eventually ended up with a large PAH. Tried to live with associated chest pain and some trouble swallowing. I ended up in the emergency room this past fall (October 14) with food stuck. It eventually passed but they kept me overnight for observation. The surgeon on call and others thought the surgery was necessary. Thus, I used a surgeon at a major medial center who claims to have done about 2,000 hiatal/PAH hernia repairs and/or fundoplications.

The surgeon repaired the hernia and did a toupet. The rationale for using the toupet (instead of Nissen) was that he thinks the manner in which he did the repair provided better odds that I would not have a recurrence. Even though I experienced acid reflux for some 30+ years, it was not the reason for my surgery. In fact, I would not have had surgery just for acid reflux. However, my GI doctor said it best; it is better to have the surgery done on a planned basis (instead of an emergency basis because your stomach strangulates). Only your doctor/surgeon can tell you how bad the PAH is.

about the recovery. I was in the hospital one night and back to work two weeks after surgery. Eating and swallowing has been difficult for me but it seems as though I am slowly making progress. I have lost 15 pounds and would not be surprised if I lost another 5 or so pounds. I am optimistic things will improve over the next several weeks. Let me know if I can answer any other questions,

-Tim
Posted 4/7/2015 1:43 AM (GMT 0)
LS- I'm in PA. UPMC Presbyterian Hospital. You can find lots of info online. Big research program since at least the 90s. Several thousands of fundos and hernias and they pioneered lots of the procedures. I believe the Full Nissen and the Toupet still have the best results - satisfaction above 90%.

Tim - I had the Toupet also. It takes lots longer to recover from the paraesophageal hernia surgery, but we benefit from so much relief because our condition was so bad to begin with. 5 weeks is still just the beginning, so don't overdo work! Take it easy for at least 3 months, preferably twice that. Don't let them rush you into dilation for the trouble swallowing. If you can swallow at least liquid and mush at this stage you're fine. Don't let them wreck a perfectly fine surgery before all possible swelling is gone, and that can be months.

MiJane, I hope you are doing well.
Posted 4/7/2015 1:55 PM (GMT 0)
Hi all,

First thank you for the responses. I so appreciate it.

Alcie I did do a search on PEH and got a lot of results, thank you! The reason I posted a new post was just to get updates as most of the posts I saw were 2011 and older. I will try to look for yours so I can read your journey and thank you so much for sharing!! :)

Surgery scares me, as I'm sure it's overwhelming to anyone. This isn't an hour long procedure when you wake up and go home. It's a complicated long surgery. Afterwards there will be pain and recovery and then it will be a lifestyle change with eating etc. Having as much information as I can before I go is helpful. Again I appreciate all of you taking the time to respond.

Mostly I'm confused because it doesn't sound like my pain is similar to anyone elses. I've been having chest pain like a heart attack but I can reproduce the pain by pressing on my ribcage and also the pain under the sternum that radiates in my back. My surgeon said that this is not normal pain for this condition so if I wake up in the same state with horrible pain and attacks and there is actually another problem that I didn't know about it will be very hard to wrap my mind around. I don't really have the problems with swallowing but it seems to getting worse every day, although that may be partially in my head because of the stories I'm reading. Last night I didn't want to take my ppi's for fear they would get stuck. Mostly I get pain that feels like I have gas trapped. If I can get out some large burps it usually will feel better but last night I had an attack that just wouldn't go away so I took xanax and went to sleep. The ER at my local hospital told me the pain shouldn't be cause for concern unless I'm throwing up or running a fever so I'm trying to stick with that guideline and not freak out ever time the pain gets so intense. Sometimes my anxiety gets the better of me because the surgeon doing the procedure is a two hour drive from here and so if I did have an urgent problem I would be stuck with my local hospital who has little to no experience with these types of operations and then what would I do?

Leading to the other question that races through my mind. How do you ever get comfortable enough that you are choosing the right surgeon. My surgeon is at a large top rated hospital. He has done hundreds of these procedures. He couldn't guarantee he would do my entire procedure because like most teaching hospitals they usually involve Med students but I know this is the norm. He is doing the procedure I was hoping for and the way that I was hoping for. It's just hard to be 'sure'. He seems excellent and what I've read is good but you meet someone for an hour and a month later they are cutting into you.

Right now I'm doing all the things they asked me to do before surgery, walking more, watching my diet and trying to get more walking and exercise in. Hopefully it will help me in the long run.

Tim best wishes to you on your continuing recovery. I hope that it helps you with great results!

Fund thank you for sharing your experience. I'm so glad you had a great outcome. It's stories like this that help me to feel better knowing there can be good results because there are too many bad stories out there and I know that can't always be the case.

Hope everyone is having a great week and thanks again for your time and sharing!
Posted 4/7/2015 10:37 PM (GMT 0)
Hi MiJane,

I did experience some of what you experienced--chest pains, trapped gas and belching. I ended up seeing a cardiologist last spring because the chest pain, at times, was severe. After an echo stress and other evaluations, he thought it was not cardiovascular. At times, I thought my chest was going to explode and my desire to belch would go on and on. Walking never made chest pains worse and generally made it better. Eventually, with some experimenting--not eating for an extended period or eating very little for an extended period--I became reasonably comfortable it was my hernia. I have and had back pain but that is partly from back issues. I did experience shoulder pain after my surgery whenever I ate. The surgeon said this pain was referred pain from the diaphragm. Thus, I wonder if your back pain can be referred pain because your hernia is irritating your diaphragm (peer speculation)?

I know what you mean about picking a surgeon. I saw 3 different surgeons before I settled and was still skeptical up to the day of surgery. With regards to long-term results my sister had a very large paraesophageal hernia repaired about 10 years ago. She has had no recurrence and no reflux and she is able to eat whatever she wants (although it took time). She eats decent size but not extreme meals. She had open surgery in Ann Arbor, Michigan. I saw 3 surgeons and all said open surgery is rarely necessary these days. Her surgeon only did open surgery. Thus, I hope you are having it done lapr. My surgery was done at Mass General in Boston and it took about 2 and 1/2 hours. I believe you have the right to require your surgeon to complete the entire surgery (even at a teaching hospital).

I did not experience nearly as much post-surgical pain as anticipated. In fact, I was surprised how minimal the pain was after the first day. Nevertheless, getting back to normal eating does take time and eating does cause me discomfort when I push it too much. I am very optimistic about the recovery process.

-Tim
Posted 4/7/2015 10:56 PM (GMT 0)
MiJane,

I intended to mention that I drove about 1 and 1/2 hours for surgery. I opted to NOT have the surgery done locally and did the longer drive realizing that if I had post-surgical complications after I was home I might end up in a local hospital. Luckily, no post-surgical complications (a good surgeon, a good hospital along with a good attitude all help),

-Tim
Posted 4/8/2015 2:14 PM (GMT 0)
MJ,

Sub-sternum pain is quite normal for paraesophageal hiatal hernia or even just reflux. When my stomach was pushed into my chest in an accident I didn't feel anything for half an hour, probably endorphins, and then I felt like I was having a heart attack. I'd had one before, and the pain was in the same spot.

I was scared silly of surgery too, but it's the only remedy, and it's a serious, possibly life threatening, condition. If your stomach rolls it can strangle itself, and then it's extreme emergency surgery that has to be done immediately.

My surgery was 2009. Things probably haven't changed too much. I was in the hospital 3 days, because I'm older and had other problems. My surgery was laparoscopic. Almost no scars, not noticeable today.

My surgeon (actually a team) was recommended by my gastroenterologist. In fact, he insisted I go to him because of the high success rate.
Posted 4/9/2015 12:32 AM (GMT 0)
MiJane,

I had a PEH (4-5 cm at different times) repaired March 24th and am doing fantastic. I am 30 years old and otherwise mostly healthy and expected the worst as far as surgery goes. Before surgery I suffered from chronic vomiting, severe chest pain, asthma, GERD, trapped gas, no belching at times and lots of belching other times, stomach ulcers, and delayed gastric emptying. All of that is gone now. I am so amazed and thankful I had the surgery. I just posted my recovery journal today with all the details if that helps.

Surgery was not nearly as bad as I expected it to be. I have some lingering diaphragm pain still (15 days later) but no more chest pain like what I used to have. No more stomach pain or nausea either.

If you have a good surgeon, follow his/her lead. I surrendered to the recovery process, hoped for the best, and expected the worst. It was far better than I thought it would be and I would do it again in a heartbeat!

Good luck,

Heather
Posted 4/9/2015 3:05 AM (GMT 0)
Thanks again everyone for the replies!!!!

It is a relief to know some of you have had symptoms like I have. It gives me hope some of my problems will be resolved. It's also so good to know of the great outcomes.

I have three additional questions

1 - have any of you had the robot assisted minimally invasive surgery or all normal laprascopic. If you went the non robot way was there a reason you chose that?

2 - Did they use mesh in your repair?

3 - What type of surgeon was your lead surgeon? Was he/she a thoracic surgeon, general surgeon, gastro surgeon? I saw one that was a thoracic surgeon and I see one tomorrow that is a general surgeon but specializes in disorders of the esophagus and pretty much does nothing else.

Heather thanks for posting your journal. I will go find it now.

Tim Ann Arbor is where I saw my first surgeon. I've heard there are still surgeons there that will only do the surgeries the traditional way but mine will do it minimally invasive.

Alcie - I'm so sorry you had an accident that caused this for you. Both surgeons I've seen have also had good outcome. I hoping I will just know which one is the right one for me. Really there is no right answer right? :)
Posted 4/9/2015 3:30 AM (GMT 0)
MiJane,

To answer your questions:

(1) My surgery was normal laprascopic (no robots). Five small incisions.
(2) My surgeon used no mesh. He told me when I first met with him that the decision to use mesh or not is based on how healthy my tissue is.
(3) My surgeon, David Rattner at Mass. General Hospital, is a general surgeon specializing in GI surgery. I have always been told that Mass General is a world-class hospital and my experience was great. A link to my surgeon is below if you wish to read (either click or cut and paste). I seriously considered Cleveland Clinic (my first choice) as I grew up outside of Cleveland and have a lot of relatives in the area. However, I was happy with the surgeon I found. Given that I currently live in Rhode Island, Boston was an hour and 1/2 drive and a lot easier than staying with relatives in Ohio.

http://www.massgeneral.org/surgery/doctors/doctor.aspx?id=16613

-Tim
Posted 4/9/2015 3:38 AM (GMT 0)
MiJane,

I am glad I did not hesitate to have the surgery. I found the following article, even though it is several years old very comforting. I read a lot of research and concluded that with an experienced surgeon, a positive long-term outcome is very likely. The procedure done in this article is pretty much what I had done. If you wish to read, cut and paste, and then click on the pdf to open the full article. If you are in Michigan, maybe the Cleveland Clinic is a possibility.

http://www.ccjm.org/index.php?id=107937&tx_ttnews[tt_news]=354489&cHash=e58db8ebb4feb0347189bfaedec781cc

-Tim
Posted 4/9/2015 4:03 AM (GMT 0)
Tim,

Thanks for the article. I actually got referred to a surgeon in Chicago that seems like he has much experience. I see him tomorrow and will let you know how it goes. It's funny I was just reading an article he wrote on the procedure... Thank you for sharing your article. It's a bit easier to read with less technical terms.

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&cad=rja&uact=8&ved=0CDcQFjAD&url=http%3A%2F%2Fwww.researchgate.net%2Fprofile%2FMarco_Allaix%2Fpublication%2F257534204_Laparoscopic_Paraesophageal_Hernia_Repair%2Flinks%2F5469f1680cf2f5eb1806de4b.pdf&ei=7_olVcbcB4a-sAW9roQ4&usg=AFQjCNEgmMCwj6IEdKTO8VB36xfzKE8cTQ&sig2=4-NSSaUu3f7H3SG-oqYfTQ&bvm=bv.90237346,d.b2w
Posted 4/9/2015 2:46 PM (GMT 0)
Hi MiJane

here is your cousin from Finland

Everything is fine with me.
My RPEH was on 2011

You asked some questions, here is my small answers
1) Yes, mine was robotic one
2) no mesh, thank God
3) my surgeon was/is gastrosurgeon
Before the op they thought this my hernia is just normal quite large sliding one, but during the op they noticed this is the PEH (10 cm in thorax area)

As I have said before, my op and recovering time was quite easy
The op took 2 hours
I spent 2 days in hospital
and the sickleave was 2 weeks.
...and that's all.

Nowadays it's 4 years and and everything is working well
Just only saying thank's to my surgeon and his team !!!

Hoping all the best to all PEH cousins!
Posted 4/9/2015 3:18 PM (GMT 0)
MiJane,

Good luck with the appointment and let me know how it goes,

-Tim
Posted 4/10/2015 2:35 AM (GMT 0)
Hi miss lapponia and thank you for your reply!!!

Tim I met with the other surgeon today. This is him by the way, he seems very very qualified to me. http://www.uchospitals.edu/physicians/marco-patti.html

He was very nice but recommended against me having the surgery which was a bit confusing to me.

He said there are three main things that indicate a PEH that needs to be operated on. They are:
1. Trouble swallowing
2. Acid reflux that is producing pieces of food at times
3. Food actually sticking when swallowing

Since I have none of the three he said he would prefer I see another gastroenterologist because he believes my pain is still something wrong with my stomach.
I don't know if I've mentioned it but a year and a half ago I had pancreatitis. Since then I have had several times with elevated lipase levels. This dr thinks
I'd be better off finding the root cause of that and my pain (the under sternum almost constant pain) and once I get that resolved see how my symptoms are and
come back and see him if I still think it necessary to have this operated on. He said there is nothing wrong with a wait and see approach for PEH and that
not all need be operated on. Again coming from a surgeon that does as many operations as he does I was very surprised.

He couldn't have been nicer and him and his staff were great but now I'm confused as ever.

What do you all think?
Posted 4/10/2015 12:28 PM (GMT 0)
MiJane,

I did not face the same issue as you because I spoke to 3 surgeons and they agreed with my GI doctor that surgery was necessary in my case. I am not qualified to render an opinion as to what you should do. Never hurts to see another GI doctor and see what you can find out. Good luck and don't give up until you get to the bottom of your issues. Sometimes you need to be really persistent with doctors.

-Tim
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