To surgery or not??

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Stockster
Regular Member


Date Joined Dec 2012
Total Posts : 54
   Posted 12/31/2012 8:46 AM (GMT -6)   
Hi everyone,

My question is one that most GERD sufferes ponder. To Get surgery or not... That is the question.

Like all of us, most days and moments come with the reminder that we have this disorder. That taste of acid in your mouth, the chest discomfort, the soar throats, the swollen vocal chords, etc. The doctors do tests and they come back showing that there isn't Barretts...yet

I'm only a year into this disorder (I don't like to call it a disease as it really isn't.. It's a mechanical disorder) and I have been to many doctors to help me try and get this under control.

Both my naturopath and my Chinese medicine Dr have told me to get the surgery if I continue to get symptoms, even though I'm on the maximum dosage of medication. More because the reflux can lead to many other issues that are a direct result of GERD. Like constant mucus, swelling, lung irritation, post nasal drip, voice issues and a number of other things that are not necessarily in the GIs wheels house.

I tend to agree, but I don't want to rush surgery, but I also don't want to wait until it's too late. My uncle died of esophagile cancer and i know his started with bad GERD.

I'm 37 and could really use you individual opinions based on your experiences

Thanks

Chris


I'm not perfect with my diet, but I'm not that bad. I avoid most common triggers, but still end up hav

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 12/31/2012 10:16 AM (GMT -6)   
Hi Chris,
Welcome to Healing Well!  Like you, I struggled with the idea of surgery for a long time. My worst symptom (and it was bad) was uncontrollable asthma.  I had a lung infection when I finally decided to have the surgery, and had it in spite of the infection (maybe even because of it).  It was pretty painful coughing post-op, but at the two and a half month mark my lungs finally healed after about 6 years of being in horrible condition.
 
Since surgery my asthma medications are a fraction of what they were.  (I have allergies, too, so they create some problems, but absolutely NOTHING like pre-surgery.)  I'm a very happy surgery customer!  It was hard to get the GI doc to recommend it, because my reflux levels weren't all that high.  My lungs are healthy now, and that is all I could wish for.
 
Here is my early recovery journal...it might give you some information to help you with your decision:
 
Again, welcome to the forum!
Happy New Year!
Denise
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

Stockster
Regular Member


Date Joined Dec 2012
Total Posts : 54
   Posted 12/31/2012 11:41 AM (GMT -6)   
Thanks for the note Denise.

I actually stumbled on your journal while looking for alternative forums that weren't so negative about the Nissen Surgery. It was the first thing I read and it gave me hope!

I'm really glad that your surgery has been a success, I will try to keep reminding myself that what ever I have to do, it will get better.

That being said, I still struggle with the constant acid and bile taste in my mouth, with a red soar throat and raspy voice (LPR) and the acid vapors getting into my lungs. I rarely can forget about this disorder.... a weak LES.... because it's always rearing its symptoms with me.

I will be more educated mid January when I get my results from the Ph test, but after reading some posts so far, I'm concerned that my results may not be accurate. I was asked to stay on my PPI's throughout. Does this matter? My GI said that i should stay on them since my my symptoms on meds are still present. I guess this will determine how well the Nexium is working.

The question I struggle with is IF I should do this Nissen? I'm so worried about being fairly young and potential complications. I think one of the major issues I have is knowing that there are other procedures out there that are being tested. Like TIF and Linx. These have potential, but not many years of results. I just fear that getting a irreversible procedure, like the nissen, would not allow me to do other ones in the future that may actually cure the issue of a weak LES. (I'm not a Dr or a Scientist, but on a side note I have a feeling this is a brain issue. If something worked fine in the past, why does it weaken when it's an invulantary response? Hopefully they can figure this out sooner than later.. for all of us)

Thanks Denise, and if anyone else can shed some light on what finally made them decide to get the surgery, that would be great. Early fixing will mean a better life, but will also put me at risk for more potential redo's
in the future. I keep toying with the thought of Quality vs quantity and to do it sooner than later, but at the same time I think I should avoid it as much as possible. I live in Canada and although we have great surgeons here, the options are limited. Pretty much a Nissen or nothing. If I were to contemplate a TIF or Linx, I would have to trek south of the boarder.... This can also work against me as I know surgeons do not like to lokk after patients that have been worked on by other surgeons!

Have a great NY everyone! I will drink tonight to celebrate knowing I will pay for it over the next couple days.

Cheers!

chris

Andy1986
Veteran Member


Date Joined Dec 2012
Total Posts : 1178
   Posted 12/31/2012 11:55 AM (GMT -6)   
The nissen isnt irreversible, if that eases your mind. Its up to you though, personally im hoping to have surgery as my symptons are constant and effect my quality of life

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 12/31/2012 12:21 PM (GMT -6)   
Chris-

I was 35 when I had my 1st nissen. For me it was the best thing I did. So much so I didn't mind having to go to an open surgery for my redo 16 months ago.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

Stockster
Regular Member


Date Joined Dec 2012
Total Posts : 54
   Posted 12/31/2012 12:46 PM (GMT -6)   
Wow... Bill,

This is your third one? Do you mind if I ask how old you are? How was the open recovery vs the lap? My dad had open heart surgery to fix a faulty valve. I know how hard it was for him, but he is now a new man.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 12/31/2012 4:59 PM (GMT -6)   
Hi Stockster,
The Nissen is the Gold Standard for reflux and will likely continue to be for quite some time.  Any GI doc I've been to (I'm in the US) felt strongly that the other options were too untested to be considered.  The Nissen has been successful for over 50 years.  The laproscopic version is maybe 15 or so years old, and it made everything easier.  Bill said his open procedure was as easy or easier to recover from.  That makes me feel better, in case I need one sometime...
 
It sounds as if you are a perfect candidate for the surgery.  It's odd that your doc wanted you on your PPI during the PH test, but it's not the first time I've heard it being done. The great majority require being off PPIs.  It'll be interesting to see how your results are affected by the PPI.  Be thankful...being off PPIs isn't fun prior to surgery.
 
If you need redos, it's not that big a deal.  They're trickier so you'll want the best surgeon to do them, but once you feel the relief of your Nissen you'll be happy to get a redo if needed. 
 
You're young, which in my mind makes it even more critical to get the surgery ASAP.  You'll be amazed at how much it will help you.
 
Stick around the forum.  It's a great place for information and support.
Happy New Year!
Denise
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

IlliniFan
Regular Member


Date Joined Oct 2012
Total Posts : 63
   Posted 1/3/2013 9:03 AM (GMT -6)   
I fought gerd for 15 years. My esophageal lining changed to abnormal cells a step before Barrett's. My diet was limited and forget any alcohol. 4 weeks post procedure, I am off PPI. I can drink orange juice which was a huge trigger for me without problems. It was a good choice for me. But it was a choice that I agonized over for a long time. The deciding factor for me was a large hiatal hernia which needed repair. Glad I had it done. 4 weeks out and nearly back to normal.

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 1/3/2013 12:12 PM (GMT -6)   
I've been in the same boat as you and wondering what the next decision is. After not being able to deal with the pain and the constant fear of barrett's or cancer, I finally moved on with all the testing. I was worried about my pH monitor coming back and not showing what I am feeling. Mine came back and proved the insane heartburn/reflux and I realize that the only real option is surgery. The PPI's don't help as much, maybe 40%, but this condition has been effecting my every day life. Good luck to you, it's hard and scary but you have to be logical and look out for your future self!

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 1/3/2013 12:12 PM (GMT -6)   
Chris-

I'll be 42 on the 15th. I actually preferred the open to the lap. I had less side effects with the open. Sure the incision was more painful for a week or 2, but I didn't have the referred pains from the gas and such. The rest of the recovery was just the same as my 2 lap nissens.
If you want to read my whole story of 3 nissens it's on the sticky page at the top of the thread list.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

Johnah
Regular Member


Date Joined Nov 2012
Total Posts : 34
   Posted 1/3/2013 1:16 PM (GMT -6)   
Sure glad to have those posting here who have been thru the surgery. For those of us considering it you can't imagine how it helps , or maybe you do since you have been there. Regardless very much appreciated !!

Go to see my GI guy next week, after a year of LPR issues , I have some good days even the occasional week but it always seems to come back. I am ready to get the tests done and proceed to the next step, if surgery is the only cure, so be it. Better than living on the pills , feeling like my lungs are being damaged. I don't mind doing all the right things , taking the pills but it doesn't seem to be enough at times.

Stockster
Regular Member


Date Joined Dec 2012
Total Posts : 54
   Posted 1/3/2013 9:52 PM (GMT -6)   
I'm with you johnah,

I usually have my LPR and GERD rule most of my days, im in sales and I talk all day. Some days I sound unrecognizable due to there acid damage. Other times I have good days and I feel like a new man. I tend to overdue it on those days because I feel normal, only to get right back to the symptoms.

Overdoing it is still eating in moderation, the foods that may trigger, but the absolute triggers are pretty much gone from my diet, like caffeine, carbonation, orange juice etc. The occasional beer makes me feel crappy, unless I drink enough of them...

The one thing that I notice, that I haven't heard of too much from others in this forum, is that when i have my LPR acid reflux taste in the back of my throat, it usually tastes so thick and acidy that it almost feels like it has a gritty texture. Almost like fine sand. I always wondered if it's doing damage, but I had a scope done a couple months ago and all looked fine. They didnt take a biopsy, but I had one 8 months earlier as well, and they did take a biopsy and it came back normal.

Fingers crossed and I will hear that I will be able to get the Nissen.

Cheers all


Chris

33333
Regular Member


Date Joined Jun 2012
Total Posts : 94
   Posted 1/4/2013 4:31 AM (GMT -6)   
Hi Chris,

Do you mind if I ask which part in Canada are you in? And the name of your ENT/GI? Did they actually acknowledge LPR?

I'm in the same boat. Tried many different things in the past 7.5 years but nothing worked.

Now trying this one last thing, I'm hoping it is THE last thing to try. See if I might be offered a nissen if this doesn't work.

Stockster
Regular Member


Date Joined Dec 2012
Total Posts : 54
   Posted 1/4/2013 9:25 AM (GMT -6)   
Hi 33333,

I'm in Toronto. My ENT it Dr. Yvonne Chan and my GI is Dr Marina Khatchatourian. I use the ENT to monitor my throat swelling and to make sure that no serious damage is being done as my voicebox and my throat are always raw, swollen and irritated. I don't think in the last year that I have had a morning when I wake up and don't hork up a gross green phlegm (Gross I know, but it's a reality). I asked my ENT, based on all I read on LPR if I had it, and she said for sure these symtoms indicate LPR. I find that I had to mention this as a diagnosis to her before she confirmed actual LPR. I actually have brought up LPR to other ENT's and they nicely dismiss me and just recommend I stay on PPI's and that I most likely have acid reflux.

My GI confirmed my Gerd after my Barium swallow came back stating i have 'Spontaneous Reflux' and she ended up doing a scope soon after to make sure no damage occurred..

I have already had Thyroid cancer and had to deal with all the medical 'red tape', with respect to Dr's tip toeing around issues that do not fall exactly in their field. This GERD issue is no different. I told my surgeon for the thyroid that I had GERD and throat irritation, along with soar vocal chords and a badly raspy voice, and I was quickly scoped with the small ENT nose camera and they confirmed there was redness and irritation. But all he told me to do was take PPI's like it was no big deal. After this I then went to the GI and told her of my finding about the vocal chords and throat and she nicely ignored it and focused on the esophagus.

In my opinion, and in my experience in the system, I have found that we have to be our own advocates to our individual health issues and be proactive in our approach educating ourselves. Yes, it is a fine line of self diagnosis (sometimes not the best conclusions to jump to), but when there are obvious issues that you feel and see, and have test result confirming your issues, then Dr's shouldn't be so afraid to call a spade a spade.

I am not hypochondriac, but I am more aware of my body since my Thyroid issue.

white lily
New Member


Date Joined Jan 2013
Total Posts : 0
   Posted 1/4/2013 2:00 PM (GMT -6)   
During the day I'm reasonably fine with my medication.
The problem starts when I go to bed and fall asleep. I wake up choking because of the acid reflux and most of the time end up throwing up.
I even tried sleeping sitting upright in bed but this doesn't help.
I have been referred for the 24 hour tests but things don't go that fast here in the UK.
It's 6 weeks ago now since the referral and still no appointment.
All doctors I've seen so far agree a fundoplication is my best option.
An endoscopy showed a hiatus hernia and abnormal stomach and esophagus. I have a constant sore throat due to the acid and the throwing up.
I'm a bit concerned about this ph test; what if it doesn't show acid reflux?

grapelady62
New Member


Date Joined Nov 2012
Total Posts : 12
   Posted 1/4/2013 3:11 PM (GMT -6)   
Chris-
are you a candidate for TIF? And hernia repair if you have one? There was a 2 year study that just ended in the US Sept, 2012 on TIF procedure. I don't know the results or where they may have been published, but maybe your doctor knows? I am in week 7 after a lap hernia repair and TIF (done at the same time). I am like a new person!
I procrastinated for years...took every PPI on the market for 11 years, and then went to a Naturopathic doctor in the last year before the surgery...to help me go through the "withdrawl" process of stopping Dexilent and all the others I had been on for years. It was a hellish year but I had to turn over every rock before deciding on surgery. My GP/internal medicine doc told me just  to "take Tums" when the rebound acid your body makes (when you stop the drugs) gets bad! That was helpful!
 
Drinking alot of water can help, and drinking Aloe juice can put the fires out for awhile. Even DGL (per the naturopathic doc) to help the LES prepare for food 20 minutes before a meal can be helpful...but the bottom line is if it is a mechanical problem (sliding hiatal hernia) or some other malformation like a floppy, inefficient LES, you need to consider fixing it. You are way too young to have to deal with this issue , as it usually gets worse with age.
 
I am 62, and I have never been so sure of a decision to have the TIF and HH repair in my life! Looking back, I wonder why I waited so long...and endured the pain and inconvenience in my life that daily Reflux causes.
 
I am super pleased with the TIF and HH repair...time will tell if it becomes as popular and time tested as the Nissen. But I do think my recovery was easier, less swelling less pain in general, able to swallow meds and vita- mins right away... and my doc told me that those funny little "H" shaped sutures can actually fall out naturally and
it won't hurt the repair outcome once the "fundoplicaiton" , sutures and sometimes mesh that they use takes hold.
I hope this helps put some perspective on it....as it is a life changing surgery! Kathleen

Stockster
Regular Member


Date Joined Dec 2012
Total Posts : 54
   Posted 1/4/2013 3:40 PM (GMT -6)   
Thanks Kathleen,

I'm gad to hear that you had a successful TIF procedure.

I have done all the Medical and Naturopathic leg work on this From acupuncture, to DGL,PPI's, eliminating key triggers (Except for the occasional drink night, that I would pay for after the fact), H2 blockers, tums, Chinese Dr's weird plant concoctions, and raised my King bed up 6 inches to help nightly upward flows of acid. I even bought that silly foam wedge to attempt to sleep on with no success. I just end up sliding off it right after I fall asleep and end up being less rested than without the wedge (that's a Christmas present that is going back!!).

I have a 'small' sliding Hiatal hernia and a weak LES. I will get the results of my Ph test in two weeks, but as usual, I was not refluxing as bad during that time...only that time. So who knows what the results will show. My Dr. even had me on my PPi's during the test to se how effective it they were at calming the acid.

Don't get me wrong. It's not EVERY MOMENT of EVERY DAY that I feel the symptoms, there are some good days where I don't have a ton of acid, but then again, I'm max dosing my PPI's, so no wonder I occasionally feel decent. Those are the days when I 'treat myself' to a coffee or a beer, to feel normal, but it's short lived. How quickly we all forget and want to be 'normal' again.

I read up on the TIF and I think personally this is the most logical option in my mind when thinking about risk/reward. The only thing it doesn't have is well documented history. There are a few horror stories out there, but that's to be expected with any surgery. Unfortunately I don't think we do not have it available in Canada, nor do we have the Linx option.

As I'm sure you researched the TIF till no end, before going in that direction, maybe you caould answer a couple questions I have about it.

1) how long does is the average TIF procedure last?

2) If there is a fail at any point down the road, can the dr re-operate and do either another TIF or better yet, a successful Nissen?

I heard that by creating a new valve, by pulling the esophagus down into the stomach and suturing, that the 'overlay of stomach on esophagus will form a bond, like scar tissue, holding the stomach permanently. If this is the case, how would they repair it again?

Once I have my GI followup I will be better armed to go to the next stage. Even my Naturopath has told me to get the surgery... this is a mechanical issue and can cause a lot more issues outside the esophagus area. So after reading a lot of positive posts I am sure I will opt for surgery if i'm a suitable candidate.

Good luck with your procedure and keep us all posted. The idea that I can't barf with the Nissen is really the only thing that scares me.

grapelady62
New Member


Date Joined Nov 2012
Total Posts : 12
   Posted 1/4/2013 5:32 PM (GMT -6)   
Hi Chris, if your "small hiatal hernia" is less than 2cm it is my understanding that during the TIF they would first use mild suction to move the hernia down to its proper position with the rest of the stomach. Then it's the surgeons choice to suture over the top of the stomach at the diaphram juncture and/or then use mesh to lessen that diaphram opening where the esophagus goes through (my surgeon's PA said that juncture is "V" shaped, and with a hernia it can become a much larger "V" shaped opening in the diaphram and that's why he uses mesh).
 
There are several YouTube videos on TIF and even an animation from the ESOPHY X medical device.
 
In answer to your questions:
1. I don't think anyone knows how long a TIF will last, although my surgeon said he feels it could be a forever fix. My doc previously only did Nissens and now he really concentrates on TIFs and has basically stopped all Nissens except in some unique cases. (I don't know what that may be, I didn't ask) So maybe my surgeon might be a bit prejudiced?
The surgery itself lasted 3 hrs. but a good 20 minutes of that is repositioning the patient from their back (for HH repair) to their left side for the TIF (lots of wires and hoses!)
The doctor who did mine was VERY VERY casual about recovery. No restrictions on coughing, burping, swallowing meds or supplements. He said "what are you going to do if you gotta burp? go ahead"...etc. He did caution against any waves of nausea but reassured me that so far that has been very minimal in his TIF patients. In one of my followup appoinments I said "are you that secure that your sutures and mesh will hold" and he said YES! I did request some Zofran (anti nausea) just in case.
 
2. Yes, if there is some kind of partial or full failure (I specifically asked my surgeon...although as he thought about it he couldn't think of any scenario where that would happen) the TIF can be repeated. As you read on the forums, I have come across some posts where people have had a Nissen redone 3 times! I believe a Nissen is a full 360 wrap. A TIF starts at 270 and it is the surgeons discretion if he/she wants the wrap to be fuller. My doc said my wrap is almost 300 degrees.
 
Your road of Naturopathic, DGL, Aloe, (I even drank slippery elm) YUCK ! sounds so familiar.  I also tried acupuncture, deep breathing, relaxation exercises thinking if I could control stress, I could control acid. When the problem is mechanical, your impact with those alternatives is minimal, but I had to try.
 
It is fascinating how the stomach tissue can "meld", or whatever word is correct, to the sides of the esophagus and reinforce a very floppy LES...I also asked specifically how that happens and got a very technical answer!
Good luck with whatever procedure you have...but it definitely changes your life in a good way to be normal again, and have a beer, wine, scotch etc. And carbonation is NOT a problem as long as you can burp!
Any other questions I would be glad to answer if I have an answer. Kathleen
 
 
 

Stockster
Regular Member


Date Joined Dec 2012
Total Posts : 54
   Posted 1/4/2013 6:22 PM (GMT -6)   
Thanks For the note Kathleen,

Since I may look into this option in the US, would you have any information on the actual cost? I'm assuming your Health insurance will cover it, but there must have been a quoted cost at some point.

I also asked my GI about how big the HH and if it was less than 2 cm's. She said yes, it was small... How can the surgeon fix the HH during TIF if he is on the inside of the stomach? I'm a little confused on that part. the procedure itself sound pretty straight forward.

And yes, I tried slippery else powder as well. but I would have that over the yucky Chinese herb powder I have been trying to drink before bed. Its revolting! lol!

I have a weird Hick-up /Burp that often happens throughout the day. They come together at exactly the same time... I think it may have something to do with the HH?! did you experience any of this?

I have watched the TIF procedure and listed to many interviews of the surgery online, but I always watch with a bit of reservation. The Dr's in the US are paid a lot of money for these procedures and I sometimes question their integrity. But then again, I really don't know. I initially thought the Linx was the best option, as it's the least invasive, but again... I'll cross that bridge when I get there. There are many who have written about the TIF not working, but I know that there are many that have had success and not written about it.

I will probably ask more questions in a couple weeks.

Still would love to hear others post surgery experiences
Chris

33333
Regular Member


Date Joined Jun 2012
Total Posts : 94
   Posted 1/4/2013 8:14 PM (GMT -6)   
Chris,

I'm in Vancouver. My preference is LINX, but like you said the post ops follow up and things like that can be a trouble. So I might end up going for the wrap...if they give me the green light.

grapelady62
New Member


Date Joined Nov 2012
Total Posts : 12
   Posted 1/4/2013 10:27 PM (GMT -6)   
Hi Chris, I was quoted somewhere between $25,000.-$35,000. and that was with minimal OR time. If the surgery goes longer like having a separate Lap HH repair and then a TIF it could be more. But it doesn't sound like you are in that category because your HH is less than 2cm. If you watch the TIF animation on YouTube they lightly touch on fixing a small HH before doing the actual fundoplication. The device goes down your esophagus and can actually make a sharp U-turn to not only see the hernia but pull it down. YouTube also has a great video about a surgeon in Chicago who is doing TIF's.....a little closer to Canada?
 
Yes yes yes, I am well aware of those hiccup/burp thingies!!!! I just don't have the burp part. I had them before the TIF and after. I can get a solo hiccup when I go from lying down to standing, talk alot...and sometimes that sharp intake of air will come for no reason at all! (hopefully not in church with my mouth open because it is loud!) I asked my doctor about it in my last appointment before being released. This is his response, paraphrased:
That is a diaphram spasm....your diaphram is a big flat muscle that divides your abdomen from your chest cavity. Your chest cavity is at -5 pressure to allow your lungs to expand, whereas your abdomen is +5. the TIF rearranges some things, irritates nerves and muscle...and the diaphram is twitchy and doesnt like to be messed with. The diaphram spasms may take 3-6 months to stop, but they should diminish with time, and then go away completely.
 
Good luck Chris, I hope things become clearer to you soon...because having "GERD" sounds so innocuous, but it really does interfere with being "normal". Kathleen
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