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Old 04-09-2010, 10:46 PM   #1
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considering a nissen

hi there,

after years of no real treatment, i finally got a good doctor who had me do a manometry and 24 hr esophageal testing, which revealed that i have really bad reflux and am a candidate for the fundoplication.

here are my symptoms, they are relentless throughout the day:

hiccuping
burping
gurgling/growling in my chest
gurgling/growling/croaking, etc. in my throat
burning in throat
chest pain that sometimes spreads to my back
feeling of liquids/food coming back up

anti-acids do absolutely nothing. during my 24 hr testing, i ate/drank trigger foods and i recorded 70 burps.

my doctor will try one last med... she said that it's an anti-acid that also helps heal nerves because gerd can make the nerves overactive. does this sound familiar to anyone? if it doesn't work, we will talk about surgery.

also.... i'm just hoping for some feedback or commiseration. i'm 22 and desperate to feel better. this condition is so debilitating. i can't eat or drink anything without GI distress, but i know the surgery has risks. what kind of research did you do if you chose to do the nissen? i've read up on how successful it is... what can one do to prepare?

thanks.

 
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Old 04-10-2010, 09:22 PM   #2
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Re: considering a nissen

It sounds like you truly do have some reflux issues.

If you have tried lifestyle changes and medications, including Proton Pump Inhibitors, with no success then a Nissen Fundoplication might be worth considering. It is a serious step though and is typically irreversible.

I had a Laproscopic Nissen Fundoplication in October 2008. For me, there was instant relief of reflux symptoms. While I did have some occassional burping, my main symptom was a chronic cough and lung irritation from the acid that triggered horrible asthma attacks that became life threatening. My coughing was gone as soon as I woke from surgery. To date, I still don't have acid reflux symptoms.

The Nissen can have a fairly high success rate. From my research, the success rate often depends on the types of acid reflux symptoms you have. If I recall correctly, the average success rate is about 85% with an increase for certain symptoms such as respiratory ones.

There really isn't anything special to do to prepare for the surgery. Post-surgery, you will be on a liquid diet, then soft diet for a while. You will have to chew your food well and avoid meat and bread for a while.

My GI doc has maintained me on double-dose PPI's post-surgery. That is atypical though. I had some digestive issues develop as a side-effect from a medication I once took. He is concerned about the excessive stomach acid on the rest of my digestive system.

Let me know if you have any further questions.

MountainReader

 
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Old 04-15-2010, 03:20 PM   #3
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Re: considering a nissen

thanks a lot!

so you really have no symptoms? you can have coffee, chocolate, mints, etc. with no problem?

is it true that after the surgery, you can't burp or vomit?

did you have any trouble with gas bloat syndrome? i'm concerned about that, it sounds unpleasant. were there any side effects for you?

is there any chance that the wrap can become undone? for example, i weight lift, so would i be able to do that or could it undo the stitches?

do you mind telling me how much the surgery was and if your insurance covered it?

thanks SO much.

this new med i'm on is called zegerid. while it does take away the taste of acid, so far i'm still refluxing quite a bit. i'm supposed to give it two weeks before calling it quits and going in to talk about surgery.

 
Old 04-15-2010, 03:23 PM   #4
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Re: considering a nissen

oh, another issue... i'm hearing a lot about esophyx tif. it seems to have a similar success rate to the nissen, but with less complications. did you (or anyone reading this) pursue both? is it possible to have the tif, then have a nissen if the tif failed?

 
Old 04-15-2010, 09:56 PM   #5
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Re: considering a nissen

so you really have no symptoms? you can have coffee, chocolate, mints, etc. with no problem? I went about a year without the reflux triggered asthma problems I had pre-surgery. Had problems this last winter and my Pulmonologist thought maybe the AR was back, but my Barium Swallow showed the wrap is intact so that is good news. I still watch my diet. I just "cheat" occassionally. My stomach still produces excess stomach acid and end up with acid related digestive issues sometimes. Most people are able to eat those foods after they have healed up though. You will always need to take small bites and chew food well though so things don't get "stuck" above the wrap.

is it true that after the surgery, you can't burp or vomit?
I burped just fine after surgery. My surgeon says it is air that doesn't make it through the wrap though. I don't know if it is or isn't. I have had some nausea issues occassionally though. I didn't/ couldn't vomit. It is unpleasant, but my "before" was so bad that I can put up with it. I got a prescription for anti-nausea meds to keep on hand for as needed. I did have a bad bout of Gastroenteritis last fall. I had bad projectile vomiting. I was really really scared I pulled my stitches. My GI doc said time will tell. So far I'm ok.


did you have any trouble with gas bloat syndrome? i'm concerned about that, it sounds unpleasant. were there any side effects for you?
Yes, I had trouble with gas bloat. I tried to watch my diet to help. It wasn't pleasant, but still was better than all the symptoms I put up with pre-surgery. It took several months to heal, but no major side-effects for me.

is there any chance that the wrap can become undone? for example, i weight lift, so would i be able to do that or could it undo the stitches?
The wrap can come undone. Chances are actually higher that it will "slip". It is a chance we take. You will be restricted from lifting weights for at least 8 weeks. Once you heal, you should be ok.

do you mind telling me how much the surgery was and if your insurance covered it?
It was covered by insurance. I had to pay my portion and meet my deductible. It cost me a couple thousand.

this new med i'm on is called zegerid. while it does take away the taste of acid, so far i'm still refluxing quite a bit. i'm supposed to give it two weeks before calling it quits and going in to talk about surgery.[/QUOTE]
Zegrid didn't make any difference for me, many people like it though. Most people go off PPI's after surgery and sometimes go back on them later. My GI doc kept me on the twice per day PPI's even after surgery. I've since switched to 60mg Kapidex that has a dual time release system.

Last edited by MountainReader; 04-15-2010 at 10:05 PM.

 
Old 04-18-2010, 08:49 PM   #6
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Re: considering a nissen

do you get used to having to chew real well? that sounds annoying but maybe you form a habit and don't notice it after a while.

does your stomach feel any different after you've healed? any tightness or sense that it's been twisted in there?

i'm worried about how much the surgery will cost and how much it'll be covered... i'll look for a thread on this or make a new one to get a general sense.

i'm so glad that the nissen helped you and you're feeling better. thanks SO much for your replies!

 
Old 04-18-2010, 10:31 PM   #7
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Re: considering a nissen

I did get used to chewing well. If I forget, I'm OK sometimes and other times things get "stuck". It's uncomfortable but eventually everything makes its way down. Worst thing that I haven't been able to adapt to had been angel food cake. Even with small bites, it tends to ball when you eat it.

In general, my stomach doesn't feel different. I can tell a difference if I (or a doctor) pushes on the area though.

I'm still making payments on my surgery. It could have been worse. I had to meet a deductible (ironically, mine went up 5 days before my surgery) and ended up paying about 20% of the costs. One thing that helped is that they had me in the hospital for 23 hours so I didn't have to pay the cost of a full day's stay. They consider 23 hours as outpatient.

 
Old 04-19-2010, 09:16 PM   #8
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Re: considering a nissen

i called my insurance. i would also be paying 20% if my surgeon was out of network. thankfully my insurance is covered at the hospital i'm going to, so i may only have to pay $150 for the hospital stay.

i have one last question. it may not be relevant in my case because i assume we live in different areas (i'm seeing a doctor in boston) but who knows. when you decided to get the surgery, how soon did it happen? is this something that is planned months ahead or that can be scheduled relatively quickly? if i get it done, i am so hoping it will happen asap because i am moving in august.

again, i really, really appreciate your replies. you are being SO helpful! thank you.

 
Old 04-20-2010, 04:01 PM   #9
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Re: considering a nissen

I just had the nissen on March 24. The doctor would have done it in a week's time, but I had to quit smoking first, so it was two weeks out from the results of the scope. Scope showed I had developed Barret's esophagus.

Doctor was worried my nissen wrap was too tight, but I have actually been able to eat before he predicted, and did not lose any weight at all.

The gas bloat was very bad up until just a couple of days ago. It's starting to ease up now.

As far as cost, I figured mine up. The total, including the initial scope and everything was $28,981.83. My part after insurance is $2,565.83.

Feel free to ask me any other questions you have, I'm less than a month out from surgery though, so I don't have long term answers for you.

 
Old 04-20-2010, 08:11 PM   #10
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Re: considering a nissen

Mine was a couple weeks out, but that was only because the surgeon only operates at the hospital that takes my insurance once a week and the week before the operating room had been shut down on that day for some renovation.

I had my surgery in Utah so I figure things might be a bit different.

I did lose some weight, but in my case that was OK. I'd been on steroids for my flared asthma from the reflux and had gained about 15 pounds. I also had the diet restrictions longer than most so that made a difference too

 
Old 04-26-2010, 06:33 PM   #11
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Re: considering a nissen

Quote:
Originally Posted by mishka87 View Post
thanks a lot!

so you really have no symptoms? you can have coffee, chocolate, mints, etc. with no problem?

is it true that after the surgery, you can't burp or vomit?

did you have any trouble with gas bloat syndrome? i'm concerned about that, it sounds unpleasant. were there any side effects for you?

is there any chance that the wrap can become undone? for example, i weight lift, so would i be able to do that or could it undo the stitches?

do you mind telling me how much the surgery was and if your insurance covered it?

thanks SO much.

this new med i'm on is called zegerid. while it does take away the taste of acid, so far i'm still refluxing quite a bit. i'm supposed to give it two weeks before calling it quits and going in to talk about surgery.

 
Old 04-26-2010, 06:38 PM   #12
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Smile Re: considering a nissen

I had the lap surgery in 2001....GERD and hiatal hernia repair....4 hour surgery. First week was not fun, but I'm glad I did it.

Lingering problems: can't vomit, but could burp right away. Since gas is a problem, not being able to do that would be bad.
Had one bout of a bad virus, and not being able to vomit was horrible......pain and rumbling for over a week and I lost 12 pounds.

Now I just have to be careful with chicken and carrots (they stick in esophagus). Doctor told me to always order a cup of warm or hot water when out for a meal and down some sugar if anything gets stuck. It works.

Last edited by roverromey; 04-26-2010 at 06:39 PM. Reason: spelling

 
Old 05-28-2010, 10:16 AM   #13
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Re: considering a nissen

update!

i saw a surgeon today and she is incredible. she thinks that surgery is the right choice for me since nothing is controlling the gerd and i have pretty bad reflux. i found out my demeester score is 51! that's so insane. what's the highest score? do i get a cookie? i really wonder what caused this, as i was never pregnant, didn't have a hernia, have never been overweight, etc.

i'm feeling really, really good about this. i can't wait for it, actually. i'm so tired of living like this.

mountainreader, i glanced over this thread and saw all those questions i bombarded you with, haha. thank you so much for being so patient with me! you are such a sweetheart. i repeated some of them to my surgeon today and she echoed what you said, basically. anyway, thanks a lot.

 
Old 05-28-2010, 10:08 PM   #14
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Re: considering a nissen

That is a pretty high DeMeester score. I don't remember exactly what my last one was. I do know it went from severe to extremely severe over the course of a couple years. My score was somewhere around yours, but you may have me beat.

I don't know what "caused" my reflux either. My LES just stopped functioning well. I did end up with a hernia, but that only developed in the last year before suregery. My theory is that all the chronic coughing I had from the reflux irritating my lungs caused the hernia. When you cough and squeeze your core muscles, you squeeze the stomach also.

You are welcome for the answers. I wish I'd had more in advance of my surgery. Do you have a date for your surgery yet? Let me know if you have any questions about coping with it.

Take care,
MountainReader

 
Old 05-28-2010, 10:33 PM   #15
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Re: considering a nissen

i meant to ask my surgeon how high the demeester score goes and forgot. i found some people online saying their scores were in the 120s but that seems impossible.

the only thing i can think of that could be a cause is that i had an eating disorder and maybe the binging really stretched and loosened stuff? my surgeon said that it at least worsened my condition later on. a lot of people with EDs have reflux so i bet there's a connection. i also wonder about a genetic component because i found out that a bunch of people in my family have reflux too. who knows. i am sure they will figure it out soon. btw i asked my surgeon about the chances of the fundo failing, and she said if that ever became an issue, then by that time they'd have invented new techniques to fix the wrap, i.e. going through the esophagus. what's cool is that she is a harvard professor and i feel like she is on top of her game.

the date is july 16. i wish it was sooner. i am moving a month afterward across the country to grad school so i won't be able to help at all with transferring my things. oh well. she said i can't lift more than about 10 pounds... is that for the whole 6 weeks? and i have to go in a few weeks beforehand to meet the anesthesiologist- she just said i'd have some bloodwork. is that all? and is the pain really bad after the surgery? she said i'd have pain meds, so i'm not too worried.

there i go again rattling off questions. stopping myself now. you should have seen me in the office; i whipped out three pages of them!

 
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