Nissen Fundcoplication for Large Hiatial Hernia

I am a deaf 46 year old woman with GERD for over 20 years (living in Minnesota) taking Prilosec until a year ago I found out that I have large hiatial hernia in which they call "para-esophageal hiatial hernia." This was discovered from the barium swallow exam. I refused the EGD because I do not like being put to sleep. I dont like hospitals and have tons of drug allergies. I was referred to a local surgeon and immediately I distrusted him and his suggestions for the repair. I asked to be referred to another surgeon at another hospital across town and same thing he scared me to death. Was referred to the another surgeon in Minneapolis area, and this surgeon would not touch me instead referred me to a surgeon who has much more experience and expertise in dealing with my case as they call my hernia and GERD tough case. I found out more last week through a sign language interpreter about the Nissen Fundoplication. This surgeon warned me that I would have these nasty side effects that everyone has mentioned in these different forums at Healing Well.

From what everyone has written in the past several years here at this Forum has really scared me to death. My first question to the 4th surgeon I saw was why would they even recommend the surgery knowing full well that I will come out of the surgery with all of these medical problems that I did not have before...such as inability to vomit, inability to burp, gas, bloating problems, ongoing nausea and diarrhea problems, and dysphagia problems, problems eating, and heartburn will return, and medication will have to be taken again. This does not make sense to me why add more to the problem? I have none of these, the only thing I have is the GERD and pain from the hernia (chest pains). I looked into other options but none of them are anymore feasible than the Nissen procedure.

I refused to have this Nissen done because I sure do not want these added health problems that I do not have right now. So the surgeon negotiated with me to do another Barium Swallow as it was over a year ago and compare the two and I told him fine sure by all means do the test but sure aint gonna have the surgery done, it will take two to three hours to repair and I do not accept the 360 wrap and I was warned of these horrible side effects so I asked him why dont he do the 270 the partial he said cant do because I have a large hernia that is 5cm or more and it would be difficult to do it laproscopy most likely will have to repair it through my left side chest...eeek I screamed and said no way..I told him he aint gonna touch me in that aspect. I am so scared because of the potential for infections and superbug that cannot be killed by regular antibiotics. So scared of having the Nissen because of these side effects. Now I am trying to find another wya and obviously there arent any..they have not come up with a newer technology, if they did, its not effective such as the Esophyx and its not effective. My surgeon is a top chief surgeon on thoracic and forgut surgery so he does know his stuff but I still do not want the Nissen, he said its the best one for me. I said really duh best one for me and yet I will have these permenant side effects that will affect/effect me for the rest of my life such as never being able to vomit, burping, swallowing, gas, bloating syndrome and all that jazz, kind of a nice life to give me is what I told him.

I had expected that the surgeons are there to fix me up not to give me more medical problems that I did not have prior to the surgery if I went through with it. This surgeon said having half of my stomach sitting inside my chest is not normal it can twist so therefore it has to come out. I said ok then take it out but do not do the wrap, he said have to do the wrap because I do not have any les my valves are gone and its the only way to prevent it from coming back up again. I said it doesnt matter because I read that many have to have it redone after five to ten years. I read the Hills is better but also read horrible stories of unwanted side effects. I do have unwanted side effects from just taking my PPI's which is osteoporosis been on PPI for over 20 years and also in menopause.

So now that I know about this more..the more I dont want to have it and made my final decision but long term I know its risky that the hernia can twist and I guess some people are just plain lucky and I am one of the few who arent. Luck hasnt been in my life for ages.

sugarbear

Hello and welcome to HealingWell.  Remember often what you read in the forums is from people that have problems as many people never go near a forum if all goes perfect for them postop.  The member's here are wise and Alcie has adviced you well.

The decision is 100% yours but do realize that choosing not to have the surgery is most likely life threatening for you.  You have done your homework well so now you must make an informed consent to move ahead with surgery or live your life as you have been.  I am here to support you and I wish you peace. 

Kindly,

Kitt

Oh by the way, Zofran is very expensive, my medicare Part D plan does not pay for it, so I have to pay for it out of pocket and I am unable to afford that so I use coke and it takes the nausea away. I know if I have the Nissen I will never be able to drink coke or gingerale ever again because of the carbonation. The surgeon told me that. I am not too happy about that. I know coke is bad. But I only drink 1/4th or 1/2 of it and save it for next day. I like iced tea noticed it helps less acid than the coke and gingerale. Gingerale helps me a lot. I always feel better after having 1/4th of it.

Phenagan is what I take for my nausea. It costed only $7 for me.

My aunt had the paraesophageal Hernia surgery. She felt so much better after it.

My gas issues have just about gone from my surgery.

Sugarbear,
I was just where you are when I began to face the fact that I needed a Nissen Fundoplication. My problem was just a small hernia and weak LES, but the reason I needed the surgery was also that it was a life-threatening condition...I have asthma, and the reflux created lungs that were so inflamed that I had difficulty breathing.

I had also read many scary and negative things about the surgery. That said, I did finally realize that I couldn't go on the way I was...it was a dangerous condition for me. I had to try the surgery to see if it would help me--if it didn't, at least I could rule GERD out as a cause of my uncontrolled asthma.

I knew that my GI tract would be changed, and that there would be adjustments I had to make, but I also knew that I couldn't go on living as I was. I was on many medications to keep me breathing, and I still have negative effects of the years I was on those meds. I wish I'd done the surgery sooner...I waited four years because of the fear I had--just like the fear you're feeling now.

I don't know what negative posts you're talking about here...I find this group a very positive and accepting bunch. If it weren't for this forum, I might not have gotten the courage I needed to move forward toward better health. (The surgery did improve my lungs markedly, and I am very happy with the results.)

As far as soda goes...You can't drink it nonstop, but while I thought a full wrap would make it impossible to drink, I've found many soda addicts here are able to drink it without problem. In the beginning they let it go a little flat, then have found that they can drink it full fizz. You can get the stomach soothing effects from Coke and Ginger Ale after it's a bit flat. The fizz does nothing to help you.

If your doctors are that worried about you letting your hernia go, you need to take their concern seriously. As Kitt said, you are the only one who can decide whether or not you'll go forward with the surgery, but you should consider your decision very carefully.

I was worried about not being able to burp or vomit. That's not the case for everyone. I could burp immediately following the surgery, and found out in January that I could vomit. Some can, many can't...but there are great anti-nausea drugs that people keep handy for just that event.

Good luck making your decision.
We're here to answer questions and help in whatever way we can!
Take care,
Denise

I went to James Luketich at Presby.  I don't know anybody at AGH.  Dr. Luke's former students are Dr. Blair Jobe at Shadyside, and Dr. Rodney Landreneau at UPMC Passavant.  They both have experience.

Ask the potential surgeon how many he's done.  Ask your referring doc what his success rate is.  That's how I got sent to Dr. Luke.  But my case was pretty severe, needed 5 hours of surgery.

 

I suppose you could just get the hernia repaired but it wouldn't help your gerd and acid reflux because it is your LES that has been damaged so badly it will never work again without surgery.  Such is my case. This has caused gastritus, the esophogus has been getting more damage faster.  I choke on acid at night even though I sleep on a 10" incline.  Even though I take a PPI I still wake up at least once to take a tums.  More than likely every time I turn over.

The acid has burned my vocal cords to the extent of not being able to catch my breath 24/7.  My oxygen saturation has been as low as 77%.  I've also inhaled the acid during the night and have gotten pneumonia.

Given what I'm going through now and the possible side effects of the surgery, I'll go for the surgery.  When you feel that way you may change your mind.

Also, (I may be wrong) I get a feeling you have a very strong phobia of surgery and being put under.  So much that it may throw you into panic attacks.  Maybe you could address that.

Hi Kitt,

You are right I do not want the surgery but I do not have any choice. My hernia has gotten worst its now 7cm inside my chest and I have no choice. The surgeon says he has to remove it because it may strangulate and it has grown and it will continue to stay stuck inside my chest and like others above said it will kill me. I do not like the answers that they gave me. I had the barium swallow and it shows it has gotten worst. The surgeon says I cannot continue as I am, I will die if I do because strangulation is a very strong possibility with a very large hernia like mine.

The surgery is scheduled for next Wednesday Sept 29th at 9am Fairview Health Systems with Dr. Micheal Maddaus as my surgeon, he is a Thoracic and Forgut Surgeon through the U of Minnesota Fairview Health Systems. As I understand its Laproscopy Nissen Fundpolication. First phase is to get the large hiatus hernia out of the chest, sew up the hole, then do the fundus and the wrap. He said surgery is two to three hours. Anyone hear of him? People said he is a great surgeon.

In the past few weeks been having severe chest pains and swallowing problems. The whole thing bothers me on top of that I have serious fears of anethesia, its been that way all of my life thats why I do not support the idea of surgery but if I dont have it I most likely will die and the choice is surgery to live or dont and die young. I am so scared of this and I pray that somehow I have the courage to go through this surgery. Everyone is telling me I will feel so much better after surgery because I will no longer feel the hernia pain anymore and also the heartburn and burning sensation will be gone and will be comfortable. As long as I follow the diet that is prescribed to me the chances of getting gas will be less. The bloat is expected due to the gas that they use to see organs better. I am prepared for that as that was already discussed with me. Surgeon did not say whether he will do partial or full. I hope he does the partial because I do not want any other medical problems on top of what I already have.

The clinical nurse there has gotten the physican to prescribe me anti-anxiety meds so that I can be less anxious less worried since the last few weeks. I'll say it helps a lot.

SugarBear is the name of my dog that passed away on August 19th my real name is Brenda. I have set up a Caring Bridge website and if anyone wants the link let me know. Thanks y'all for the support

Good for you Brenda -

I'm glad you are listening to your physicians. The side effects are no fun, but most of them do go away! It takes time, 4 months for me as a senior citizen after 5 hours of surgery, but we do recover. I still can't eat broccoli, but that's no reason not to have the surgery. I feel so much better nearly a year later.

Don't worry about the degree of the wrap. Do whatever testing they throw at you so they can figure out what is best for you.

I am also afraid of anesthesia, but there was no choice. The only thing I would advise is to ask for an induction agent other than Etomidate. I didn't know what it was, actually asked for no amnestics, and it gave me 3 days' amnesia. It's on my list of things to refuse in the future.

Hi Brenda,
Any quirks or changes the surgery leaves you with are well worth it, considering the alternative! It sounds like you have a wonderful surgeon who will fix you right up. If you were researching on the internet, I'm sure you read many scary posts written by people who had the surgery and had horrible side effects afterward. I read posts just like that before my surgery, and it scared me so much that I waited far too long and had some serious physical problems as a result.

Many of the people who share their terrible results were operated on by inexperienced surgeons who didn't know what they were doing and had no business doing the surgery in the first place. Choosing a skilled and outstanding surgeon is the most important thing you can do to ensure that your result will be a positive one.

Yes, you'll have to put up with some differences caused by the revamping of your upper GI tract, but those quirks become second nature after a while, and you don't even think about them.

Best wishes for a wonderful outcome! Be sure to keep us informed as to your progress. You'll be joining us as a member of the "Wrapped Club"!
If you have any specific questions, ask away. We'll be here ready to help in any way we can.
Take care,
Denise

Hi Sugarbear!

I have been lurking here for about a month - because I have the same problem that you do - and I'm scared too. *big hugs*

When I saw your name, I just had to click on your post! That was my cat of 16 years' name (sugarbear) - and I'm one of those people who is always looking for "signs" haha Maybe we can comfort each other as we head into this?
I've not spoken here until now - I'm shy with strangers - but I just had to post when I read what you wrote.
I know you are scared but it's going to be okay. We're both going to be okay.
Everyone here seems really well informed, in fact, I've learned so much reading this forum that it has alleviated a lot of my fears even though some of the stories make me feel rather anxious and I could tell they had the same effect on you.
(In fact, at first when I started to read them, they scared me half to death.)
Certainly, I'm frightened, like you, about the possibilities of after effects, and of waking up in pain - but just like you my stomach is herniated out into my body cavity and that means we're going to have to grin and bear it and let the doctors fix us up.
I don't know about you - but I don't want to risk dying so I'm trying to find acceptance for my situation.
If you can do that, it'll help you to stay calm - or at least be a little less scared.
Besides, those things don't happen to everyone - and the one that scares me the most - the gas being trapped in your body after - it goes away from what I understand. Everyone who had it happen to them said it eventually went away.
Pain frightens me, it seems to frighten you too - but just think of all the people who had this done and then they got better!
It would be so nice not to have the chest pain anymore and all the constant acid (and everything I eat) coming back up into my mouth.
I figure, we're already in pain, aren't we? This next thing will hurt at first but if it goes well we might not have to hurt anymore or take these pills anymore - and that sure would be better than the situation we're in now, wouldn't it?
If we can just hang in there and be brave we might both be surprised! : )
Maybe none of those after effect things will happen to either one of us!
If they do though, there are all of these nice people here to talk us through it.
I think that makes me feel a little better.
It's nice to know that we wont be alone, isn't it?

I am really empathetic to your fears about the hospital.
I'm a high functioning autistic person with all kinds of reactions to different medicines as well as a really high tolerance to pain meds (I dont know why they just dont work on me like they do on other people and I'm allergic to Morphine) and I'm a germophobe too. You can imagine how someone with those issues might share your anxiousness about having to be in a hospital, right? haha
Hospitals are very scary places for anybody, I think, but maybe a little more for those of us who are "different" on top of everything else that makes them kind of scary.
When I get scared though, I try to find some way to get un-scared. If I cant change the situation then I want to be as well prepared and informed as is humanly possible so it will alleviate some of the fear.
If you just let yourself panic you'll be afraid through the whole thing, and it won't help a thing.

I'm a stickler for details (comes with the territory with my kind of autism), and I've been reading everything I can find on this procedure and on this forum to try and figure out what I could do to get ready for this surgery where I would perhaps suffer less afterward - and if you'd like to know what I've been doing to get read for the operation, I'd be happy to share it with you. : )
( I always feel more secure going into any situation over-prepared. Seriously, over-prepared. haha)
I think the preparations have helped to calm me down some, maybe if nothing else you'd find it comforting to feel more in control of a situation which makes you feel helpless?
I hate to see anybody so worried and afraid....you hang in there....*hugs*