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Extremely apprehensive about surgery

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GERD & Acid Reflux
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Posted 10/4/2013 2:25 PM (GMT 0)
To get right to the point, I'm actually scheduled already for the nissen fundoplication surgery. I am in fact scheduled for it November the 1st. But I am getting cold feet about it. I am truly concerned that maybe my symptoms aren't "bad enough" to justify this I need to know what I am doing is the right thing. Both my specialist and surgeon have said okay to the surgery. Its like you spend next to no time talking to them and they jump to surgery conclusion all in 3 hours of the time they've ever spoken to you. I've suffered from GERD my whole life, I'm 28 years old, I'm usually an active runner, about 5'8" just under 180 pounds.

I had the endoscope done where they take the camera down my esophagus and they found a hiatal hernia. First thing the specialist tells me, I am a candidate for surgery. I had the motility study done where they put this probe down your nose to check to see that your esophagus functions properly. Mine functions just fine. But then I had the PH study done, and they documented 87 occurrences of acid reflux in 24 hours, WHILE I was on the maximum prescribable dose of acid reducers (40mg of omeprazole twice daily). Then after I spoke with the surgeon to schedule my surgery he had me to the esophagram. Its where they have you swallow this nasty (not nearly as gross as I had imagined based on peoples posts about it) and you see in real time on this video like screen it moving through your esophagus. Guy looks at me and says, "I don't see any sign of a hernia at all!!" What the ""ll! Tell me that I'm supposed to feel just as fine about going through with the surgery after I hear that, and its not like they've scheduled anything for me to actually talk about the results!

I called in afterwards to speak with my surgeon. Naturally lady tells me that he can not come to the phone and nurse will call me back. Still waiting after a few days. Normally I'm a super nice guy, but we are talking about a life altering surgery here.

I don't experience heart burn at all like most people who have GERD. I am told that I cough more than four of other people's smoker friends combined, and I never stop clearing my throat pretty much ever. I bring hard candies to work to suck on the whole time just to manage the really thick flem (its like glue much of the time) that just sits in my throat. So I am always clearing my throat with out much success. The acid reducers even at the maximum dose only mask my symptoms, never make them go away.

When I wake up in the morning its the worst, I have a wooping cough with continuous throwing up of acid. I spit in the sink maybe twenty times during the course of getting dressed and use a special toothpaste to try to manage the acid on my teeth. It feels like there is battery acid always in the back of my throat. I get confused though because there are times at work I feel fine. Still I spit out blobs of thick acid that sticks to my napkins like glue most days and when I wake up I ritualistically throw up acid in a tantrum of coughing every morning.

It sucks -- but all of this talk is very scary, possibility of never being able to burp again, not being able to throw up, never being able to drink alcohol, and NEVER? being able to have the sensation of being full again when eating to know when to stop?!

Anyone that is willing to post about what they feel about my situation would be great. Thing is I have terrible symptoms but it seems all I have to compare my situation to are people who post about chronic heartburn which I never get, just the constant acid that sits in the back of my throat.

For those who read through my whole post, I can't thank you enough. Hope to hear from you soon!
Posted 10/4/2013 2:37 PM (GMT 0)
Hi there! I am 29 F 5'5 145. I had similar symptoms and was just as worried as you before surgery.

I will tell you that if they think you are a great candidate, you probably are and the surgery will really really help you and make your life better and you will heal from it faster than you think.

I had a nissen on August 9th of this year, so I am just about two months out and I feel wonderful. My lungs feel clear, I am no longer regurgitating all my food, I don't take medications.

I can burp!

I can eat pizza too.

And I am not the only one on this forum to have a great success story with the nissen. Its ok to be scared though, but just know that its most likely not as bad as it sounds.

Please check out my journal on here and let me know if you have questions, or even if you just need an ear.
:)
Steph
Posted 10/4/2013 3:21 PM (GMT 0)
Thanks Stephanie! I need all the words of wisdom and positive feedback I can get.

Post Edited (Diaas2) : 10/4/2013 9:31:10 AM (GMT-6)

Posted 10/4/2013 3:31 PM (GMT 0)
Hi

I'm 6 weeks post op and its the best thing I ever did,I would o through it again tomorrow .
No more pain ,no more reflux,no tablets,my asthma has calmed down,no more feeling of having something stuck in my throat,the list goes on.
I can eat most things and I get the feeling when I'm full.
Everyday is better than the last and as I said if I had to go through it again I deffanatley would its the best decision I made regarding my health.
All those symptoms you describe will all stop once you have had surgery and it will so be worth it,
Good luck with whatever decision you make
Ali
Posted 10/4/2013 3:34 PM (GMT 0)
Hi Diaas2,

I just wrote this post on another thread and will copy it here for you.  It describes my journey toward surgery, which I had in February 2009.  This forum, actually, was one reason I had the courage to move forward.  Like you, I was fearful.  (BTW, I suspect you have a "sliding hernia", which moves up and down--sometimes being invisible to testing...which is why the radiologist didn't see a hernia.)

 

My symptoms were "atypical" which makes surgery results much less clear-cut.  What you're describing are typical GERD symptoms, which makes you a great candidate with a very high probability of success, as long as you've chosen a skilled and experienced Nissen surgeon.  You're one of those "sure thing" candidates that surgeons love.  The surgery is sure to do wonders for you.

 

Here's a link to my recovery journal FYI...it'll give you a glimpse into what my experience was like: https://www.healingwell.com/community/default.aspx?f=45&m=2183443

 

This forum is a great place to get support and information.  People like StephanieJean do a great job of providing lots of support and first-hand experience.  I got so much help when I had my surgery (and I knew that type of information was sorely lacking on the internet) I decided to stick around and "pay forward" the help I'd received!

 

Here is my post-surgery description: 

Hope it helps!

Best wishes,

Denise

My PCP pushed for 6 years to get me to a surgeon. My GI doc wasn't impressed with my PH monitor/DeMeester scores, and kept telling me that my lung issues weren't GERD related.  I went along with that without a fight, because I'd read so many scary posts online, and was fearful of the surgery.

My lungs got worse and worse.  I was coughing constantly, and got multiple lung infections.  Even simple allergy/sinus-infection induced bouts of asthma were made SO, SO much worse due to the reflux effects.  I ended up taking tons of steroid inhalers and even prednosone, and nothing worked at all. 

My PCP and asthma docs both wrote letters and called my GI doc, telling him of their concerns and suspicions.  My asthma doc didn't have the personality to push back, but my PCP sure did.  He continued to push me toward surgery, and finally, in desperation, sent me to a surgeon himself.  The surgeon did his own testing and said I was a good candidate for the surgery (I'm sure based mainly on his respect for my PCP's opinion.)

Since I had researched quite a bit and had even found this forum, I knew the importance of finding a skilled, experienced NISSEN surgeon.  Not just ANY surgeon would do.  It needed to be a surgeon who'd done hundreds and even better, thousands of Nissen surgeries.  It's an art form, and even an acclaimed surgeon who hasn't done enough Nissens isn't good enough.  My daughter-in-law is a PA and she had earmarked a brilliant surgeon for me, and another surgeon said no...and steered her toward a surgeon who specialized in the Nissen fundoplication.

Because of that, I went back to my GI doc with the information from the surgeon.  At that point the GI doc scheduled another PH monitor test, which came out just barely over "normal".  I think he realized that my PCP was serious and very concerned about my lungs. He told me after the test that "probably a few good reflux episodes in a day could create problems with your lungs" and gave me two choices...continue to take medication for the reflux, or he could set me up with a consultation with the surgeon he uses. 

It was a simple choice.  The medication wasn't doing a darn thing, so of course I chose the surgeon.  By now (6 years into my lung nightmare) I was willing to take the chance.  I knew that the surgery might not fix the problem...I was more than willing to have it anyway. At least it could be ruled out!  People at this forum (most of whom have gone on their merry way) were extremely positive about their outcomes.  I made an appointment with the surgeon and had the surgery 3 weeks later.  Even the surgeon had concerns about my low DeMeester (PH) score, but said he'd do the surgery on the recommendation of my doctors.

The rest is history.  I struggled after the surgery, but knew that my lungs hadn't gotten so damaged in a few weeks and it would take time for them to heal.  It  was almost like magic...it was May, and during my worst pollen season, and suddenly I no longer needed the nebulizer treatment!  It was wonderful to be able to breathe and not have to cough up gobs of mucous constantly. 

Of course hindsight is 20-20 as they say, and I wish I'd done it before getting all the steroid skin effects/adrenal insufficiency.  My adrenal glad is back to normal again now that I'm not filling myself full of steroids. I'm a happy camper!  I can breathe again, and most of all, I'm not coughing coughing coughing.  My PCP was thrilled with the outcome.  I really have him to thank for my recovery.  He was the one who persisted and made it happen.

Posted 10/4/2013 3:50 PM (GMT 0)
I can already tell joining this forum is the best decision I've made in a while. Thanks guys.

Denise, your thoughts on a sliding hernia are very insightful.
Ali, I appreciate your encouragement.
Posted 10/4/2013 4:46 PM (GMT 0)
Oh by the way, I totally had two (smallish) glasses of wine last night.
I miss beer, but trading carbonation for not having that disgusting sore throat and cough is a good trade to me.

They say that after you heal up, if your wrap is sufficiently loose you can enjoy beer and stuff. Its not because it is bad for you, but you will notice that stuff will bloat you. Its my only real complaint from the surgery. I have had a drink or two of a nice craft beer when someone will come over because I feel like I HAVE to taste it :)

about throwing up-you dont really need to be able to do that. Some people say they still can after the surgery although I would try to really really avoid it so you don't damage your wrap. I keep Zofran in my purse, desk drawer, car, at home...just in case and just know you can always run to the ER and they can help you too. Don't let that be a deciding factor to not get the surgery.

I never had typical heartburn symptoms either and its hard to decide to get a surgery done when you are just a little more than mildly inconvenienced by your symptoms, because most people reserve surgery for when they are in loads of pain and its an emergency. You are doing the right thing for yourself. Your symptoms and side effects of reflux will only get worse as you get older and the surgery will help you live a normal healthier life.

We will all be here for you before your surgery and during your recovery. The weirdest thing to get the hang of is the diet post surgery, something I am still dealing with because of the dreaded bloat (which sucks if you are a salad eater like I was in my pre-nissen life) but its not anything you cant manage. Everyone's recovery is uniquely weird and luckily we have a great group of people with a variety of experiences to help you get through it!
Denise and Bill are wonderful resources too, they have been here for longer than me and have so much wisdom and experience and are always there to help however they can. I know they helped me so much through my surgery, I owe so much to this community because I would have been so lost without everyone here.
Posted 10/4/2013 5:00 PM (GMT 0)
Diaas2,

Hello and welcome! I think you've found the right place to be. This forum, and its members, are filled with stories of apprehension just like yours. I had the Nissen procedure back in April, and I wouldn't change it for the world. I'm a little older, almost 40, but had struggled with GERD for as long as I remember...back to when I was a teenager. After being going through the gamut of prescription PPI's and landing on Protonix 4x's a day with minimal relief, my surgeon said, "The only way out of this is if you have surgery". By this point in my life I was frustrated, in constant pain, and having horrid reflux from doing basic things like brushing my teeth and drinking a glass of water. I couldn't even walk by the bathroom when my daughters were getting ready for school because the smell of hair products would send my reflux through the roof and I'd have acid in the back of my throat for most of the day. On top of having to sleep sitting up for the last year and a half, I was ready for some permanent relief.

In any case, we all had to have the same procedures you did. EGD's (I've had 5!), manometry studies, barium swallows, and the horrid 24 pH study. One thing to note is that hiatal hernias aren't always visible on barium swallows. Especially if they aren't significant in size. I had a very small one, just a few centimeters and it was not visible on the barium study. In fact, my surgeon didn't even see it until he went in to perform the Nissen. The only thing the barium study showed for me was that my LES completely shot. Imagine the gasps in the room when the Radiologist tilted the table back and saw the barium come right back up without any resistance!

There is hope, however. And don't be afraid about not drinking alcohol again. That's certainly not true. I had a rather large beer last night with dinner and didn't have a single problem. That said, everyones healing is different. I still can't really get out a good burp but I'm not worried. My surgeon told me it'd take up to a year to be able to do that again. So, I trust the process and wait. And, I don't know where you heard/read about not being able to feel full ever again because, as I'm sure others on this forum will tell you, you DEFINITELY notice when you're full. Especially in the beginning (I never thought I'd get full off of 5 spoonfuls of oatmeal, but it happened!). As your body adjusts to it's new-ish anatomical layout, you'll get back to your normal diet. 4 months out and I can say I'm pretty much eating anything I want and still am able to know when I'm getting full. It happens a lot faster than it used to pre-Nissen.

The recovery period isn't pretty. You've just had major abdominal surgery (anyone that tells you differently is a quack!) so expect to have your up and down days. However, from personal experience, I'd take the healing process every single time over having the horrid reflux and GERD symptoms I dealt with. Like others have said, it's probably one of the best decisions I've ever made and I couldn't be happier with my recovery and how I feel.

One thing I can't stress enough is to do your homework. Know the procedure (I watched so many videos and read so many medical journals I could have done the procedure myself!), and talk to people on this forum. They were fantastic help to me and helped me know what to expect. I warned my caregivers so that they were prepared as well. In the end, it went off as smooth as I could have expected. I attribute that to the research I did, preparing my home & pantry for my after care, and most importantly, letting my body tell me when it was ready to move to the next step in the recovery process.

You'll be fine, eventually. Trust your surgeon, the process, and your body. In the meantime, ask as many questions as you want. This forum and the people that participate are here to help you. We've all been through it and know what it's like first hand.

Be well and take care!
-TonyG-
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