Tif failed; Bravo score pre-surgery lower than post-surgery

Hi Everyone,

I apologize in advance if I sound  a bit down but it's been 2 days since getting confirmation of this. I had my TIF surgery May 10,2010. My Bravo PH test showed that" significant acid reflex peresits."  My test score

went from a 20 to a 44 post-surgery.  I talked with my surgeon the other day for 50 minutes and he has not a clue why it didn't work for me.

My surgery is intact and looks beautiful he said from my Endo.  I followed my diet as was instructed .  He wants to repeat 2 other tests that were previously normal.  One is the stomach emptying test and UGI (Upper Gastrointestional Barium) study.  He wants me to me continue all meds prior to surgery.  I hate the side effects that I get form my meds.  I also hav e to take Zofran every 6 hrs which make me tired. He also wants to add meds bec/ during a recent Endo he found Bile reflex that are a result of 1/09 Gallbladder removal.  The only recommendation is to do a Full Nissen.

During recovery I had all Gerd symptoms and was worried I was suffering for nothing.  Now that I medical evidence that it failed I am sooooo sad.  I feel as if there is no hope an I will never get better.  I always used to think when I get better....and I was soooo looking forward to this.  I really believed I was going to get better.  My Dr. confirmed I am the only one with an intact procedure that has failed.  He and his partner have only done 12 TIF's.

Has anyone ever dealt with this?  What did you do?  Did the TIF fail and the Full nissen work for you?

sorry to hear this. i think your fear is one we all have. the tif is newer and from what ive read seems more user friendly, but is failing a lot. if you have worse reflux your only hope may be the fundo. i just did it 5 days ago and noticed symptoms the next day and today i noticed more after i ate more. it is not perfect, but may help. maybe consult another surgeon..they should be able to explain whats going on to you

Gerd 11

My TIF surgery failed also.    I had tests done in Pittsburgh, Shady Side Hospital.

The only thing I know about my test results is that my motility test was probably normal as the tech said she wasnt supposed to tell me but she didnt see any problem.

After my Scope the Dr said the valve was open, but everything looked ok.

I have an appointment Sept 14 to find out what the dr says.    I am assuming it will be to have surgery, but you know what they say, never assume.

Sorry to hear your surgery failed.   Hope you are doing ok.

Dencha,

Thanks for responding. I can't sleep I am so upset about the TIF failing.  I thought the recovery wasn't easy.  I think the recovery is the about the same with both surgeries.  My Dr. chose the TIF bec/ I didn't have a Hernia. I am very interested in your story.

Can you share more?  When did you have your NIssen?  Was it ever working?  Did you do a PH BRavo to see if it is working?  Are you on meds still?  What relief if any did you have?

Thanks for sharing and caring.  Its been really tough to accept that this failed and I'm not having an easy time.  I

GERD11

Gerd11    I dont really know what caused my surgery to fail.   The original surgeon said it was intact.    I only had a brief talk with my new surgeon after my scope and he said it was open.   So I am assuming it (LES) wasnt intact.   I will find out at my appt. next tuesday.

I have burning nose, and tongue.   Sometimes burning and sore throat.  I also have a sinus drip feeling.   I have this all the time.   It never goes away.   Sometimes I have a little burning in my chest, but not all the time.   The burning is kind of like a menthol feeling.     It is very annoying and not something I think I can live with the rest of my life.

I will probably have the Nissen if that is what the dr recommends, because I have short segments barretts.

My surgery was done on April 9, 2010

I will let you know what I find out on Tues.

Hi GERD 11,
Sorry I didn't get back to you sooner. It has been very busy around my house these days.

I had my Nissen in February 2009. I had the atypical symptom of asthma. My reflux, while annoying at times, was not bad enough to warrant surgery by itself. My esophagus was not damaged, because I was put on PPI's immediately after discovering that I was having reflux.

The problem was that the reflux, no matter how mild, was causing my asthma to be much worse. Over the years the reflux got worse, and my asthma become uncontrollable. I was on high doses of inhaled steroids to try to control it, and even oral steroids didn't relieve it. It because life-threatening.

Through all that, my GI doctor never thought my GERD was bad enough to have surgery. It was my family doctor and asthma doctors who pushed for it. Finally, my 24hr PH monitor put me at 14--very unimpressive, but with the urging of my doctors, decided that yes, it's possible that a little reflux could do a lot of damage to lungs.

So...he told me I could continue to treat my reflux with meds (kind of a stupid idea, since I was already doing that to no avail), or go talk to a surgeon he recommended highly. I didn't really have a choice at that point.

I talked to the surgeon, then made the decision that I had to give the surgery a try. I brought my husband back with me to hear what he had to say, then scheduled the surgery.

My lungs were so bad that we couldn't wait for them to heal prior to surgery. I went into it with a pretty severe lung infection. I was also on high doses of oral steroids. (The extensive doses of steroids had done damage to my skin...it is now thin and tears very easily, and I bruise with the slightest bump.)

I had the surgery (I was having adrenal insufficiency due to the steroid use, and had to have a boost of steroids so I didn't go into shock from the surgery), and when I talked to my surgeon afterwards, he said that my internal tissue was so fragile (from the steroids) he was afraid the stitches wouldn't hold, so he put in extra ones for good measure. He considered using mesh to secure my hernia (a small one) but said that mesh can cause it's own problems, so he decided against it.

Fast forward to recover time. I continued to have horrible lungs, and coughed up mucous incessantly. I was on steroids, a nebulizer, all kinds of inhalers, and my lungs were awful. I ended up on a course of antibiotic shots, which finally cleared up the infection.

It took my lungs two and a half months to clear up. In the middle of May, in the height of allergy season, my lungs finally cleared.

After four years of horrible, sickly lungs, I finally had relief.

Yes, the surgery did work. It worked like a charm. I have and still do have concerns (and am pretty sure I'm right) that the extreme coughing I had to do during the healing process did some damage to the wrap.

That said, my lungs have continued to be 100% better. While I get some allergy/asthma symptoms, it it nothing, nothing, nothing like what I experienced prior to the surgery.

Last Christmastime I caught a bad cold, and was back to coughing a lot. In January, I noticed some sour taste in my mouth.

I waited a while, then went to the GI doc, who ordered a barium swallow. The results were that the hernia was intact, and the wrap looked like it was fine. There was no indication of reflux.

I did have some barium that was retained in the esophagus after swallowing, and seemed to move up and down the esophagus propelled by air released by the stomach. My GI doc said that was a first--he'd never gotten that diagnosis. Go figure.

My GI doc diagnosed me as having a little bile reflux. I find it very intermittent. Comes and goes. My guess is that my coughing did something to a stitch, and it moves a bit, sometimes allowing a little reflux.

I take Carafate Suspension fairly regularly to protect my esophagus and stomach. I've got an extremely reactive and sensitive stomach. When I eat something that is irritating (roughage or something extremely acidic, etc.) it can get my wrap feeling irritated. The Carafate is a wonder drug for me. It coats my ornery stomach, and calms things right down.

So...if my wrap should fail, and I get enough reflux to get my lungs acting up again, I will be right back for a redo without hesitation. I will not live like I did. It was a dangerous situation, and I was not well.

I would urge you to consider the surgery. While it's not perfect, and those of us in the "Wrapped Club" have a few little quirks in our upper GI tracts, it's well worth any inconvenience it causes. I wish I hadn't needed it, but still very glad the procedure was there for me. It was my only hope.

Sorry for your disappointing TIF result, but be glad that there is another option. The Nissen has been around for over 50 years (close to 10 laproscopically), so it is a tested procedure.

Hope my diatribe was helpful!
Take care and try not to get down. There are so many things to be thankful for!
If I can help by answering any other questions, let me know.
Denise

gerd 11 so i thought long and hard about the anatomy before surgery and the way i understand it is even those of us with weak and lax les it still works sometimes.. mine was open lax, but had pressure..low, but pressure. if the wrap doesnt get closed at least as much as our body then we can get worse. i think. thats all that makes sense is somehow our new passive valves dont work as well as the old one which wasnt working great either, but now we have more side effects. i figured exchanging some was well worth it, but so far i have all the old and new symptoms. so frustrating. for me i talked with the doc about this even the morning of surgery and he said he could improve me and said my other tests showed reflux..albeit the probe was normal..but done on acid pills. I am giving it 3 more weeks then will get a barium swallow to see for sure.. that way we know. hope you get it under control. like denise i take acid pills as im taking no chances as i got pretty bad before this and should have had it done a yr ago. with that said the gi doc says if im no better afterward theres no point in keeping it and he will find a skilled surgeon to take the wrap down.. he thought i needed it, but says he only wants me to endure the side effect from fundo if it helps. i agree. not sure where your at but if i get testa that show its worse mines coming down. either way its misery but if they can restore you and me then maybe. iagain im way ahead of myself, but i will do a redo with someone more skilled or ill take it down.

i know i just thought id have some relief, and when i couple that with burping normally, water brash, no trouble swallowing , constant throat clearing i wonder if he got it tight enough.. sometimes my burps bring up cold liquids. nothing else, only colds. if its tight should i be able to belch stuff up. anyway im not going to post for a week take it easy, get back to work..starting anxiety med.. anyway im going to relax and i guess we will hope for best and if the wrap isnt good theres always a redo..but i will give it a month at that point the docs said if im not feeling any better he will order barium swallow. so i will relax next 3 weeks and then go from there..hopefully it will be better then. thx for your help

sounds good, glad you can burp too, probably save us from other pain. when i see the surgeon next week i will ask him what he thinks should be a fair time table..with that said im not sure he really understands gerd-symptoms. i think though if im worse or no better..not even a little i may ask for a month..if im making baby steps i have no problem waiting...well thats not entirely true,, but you know what i mean :)

Hi GERD 11,

No, the bile reflux that I get doesn't make me nauseous, thankfully.

Just because the TIF didn't work, doesn't mean the Nissen wouldn't. the TIF is much newer and less tested. The first GI doc I went to said that the new procedures haven't been around long enough for him to recommend them. He wasn't all that hot on the Nissen either, but that wasn't helpful to me, since partly because of him, I avoided the surgery for far too long, and have some serious side effects because of it.

I had asthma that was uncontrollable due to reflux, and there was no guarantee that the surgery would help. I didn't have a choice, though. I had to give it a try. Thankfully, it worked, although it took a couple months for my lungs to heal after years of irritation.

My recovery from the surgery was much easier than I had ever expected. I was really ready for anything. Of course, attitude is a big thing, and I was very positive about the recovery, and was determined not to fight it. I decided that whatever path my recovery took, I'd let it lead and I would follow. If you can go with the flow, everything goes so much easier.

My surgeon was very up to date with his post Nissen diet. I was on liquids in the hospital, then soft foods until i saw him at 5 days post op. At that point he warned me to stay away from steak and soft bread, but told me I could eat anything that could be chewed to a liquid, and believe me, that includes a lot of things. Being able to eat normally (although very little--the swelling in the stomach mimics fullness, and you won't be able to eat much in the beginning) made everything better!

At four months post-op, we went on vacation, and by then I could eat anything and normal amounts. Really, the recovery was much better than the reflux episodes I'd had before the surgery.

If you're suffering, and the TIF hasn't worked, I would urge you to consider the Nissen. If my coughing post-op damaged my wrap and I eventually need a redo, I will have it done without hesitation. Some of us don't have the luxury of being able to manage our reflux with meds.

Good luck with your decision. I'm here for you if you have any additional questions.
Take care, and try not to worry.
Denise

Hi GERD 11,
Absolutely, my GERD got worse over time. I started on fewer and less extreme meds, and ended up on Protonix 40 mg twice a day, and Zantac 300mg at night. As my GERD got worse, so did my lungs, which finally (too late) led me to surgery.

I was never on Motilum, but did take Reglan for quite a while. I don't know if it helped, but it didn't seem to, and I didn't want to take any chances with the weird side effects. It's not the same as Motilum, though...although it might do the same thing. It helps the stomach empty faster.

They did a stomach emptying test when I was hospitalized for asthma caused by GERD, but stupidly, they did it while I was on Reglan. Either I didn't need the Reglan, or it was doing its job, because my stomach emptied just fine.

Have you had that test? Maybe that would be a first step before taking a med to help stomach emptying. You might ask.

Good luck with your visit to the surgeon. Try to take a list of questions, so you don't forget what to say. That always helps me!
Let us know what happens.
Denise

Hi Tammi,
I did some looking online, and in many locations it states:
"People who have had their gallbladders removed have significantly more bile reflux than do people who haven't had this surgery."

So, your GI doc is correct in pinning the blame on your gallbladder removal. Of course it also has to do with the valve between the stomach and the duodenum that allows the bile into the stomach, but there is apparently no doubt that gallbladder surgery is a culprit.

Seriously. Your two docs are tossing you back and forth--neither wanting to take the lead.

Do you think you have a motility problem? Do you feel that your lower GI tract is slower than usual?

Do you have a good primary care physician? I'd be inclined to go back there for help. He/she sees you as a whole person--not as just the individual parts that your GI doc and surgeon are focused on. Your PCP should be able to help you decide what your next move should be. Specialists only see their specialty. It seems to me you need someone to intercede in your behalf, and figure out where you should go next. Let your PCP know your frustration and how poorly you've been treated.

I definitely don't blame you for being upset. Anyone would in your situation. Those specialists should be ashamed for their behavior and lack of caring.

Actually looking at the motility issue now, is a little "bassackwards", don't you think? Didn't they think of that before putting you through the TIF surgery?

Anyway, most importantly DON'T GIVE UP! I totally get your frustration and sadness, but don't let it get the best of you. You WILL get better. You WILL find a way to fix your reflux.
Like I said, you need to go to the doc who sees you as a complete person, and get him/her on the case. You have the right to be listened to and responded to respectfully.

You also have the right to expect the doctors you see to know what they're doing and find the answers to what's going on. If the ones you've seen don't satisfy you, go to others until you find someone who can help. There is more than one GI doc out there. See if your PCP can recommend a different one.

I wish I had answers for you, Tammy. All I can do is be your cheerleader as you go out and find answers to your questions. We're all here to support you as you go forward!

Keep your chin up. You will find the answer.
Denise

Hi Tammy,
Well...you can still go back to your primary care physician with a list of your issues and the non-answers you've gotten from other docs. Insist that he refer you to someone else, if those "jokers" aren't taking any responsibility for what has happened.

I'm sure when your primary doc sent you, it was in good faith that the surgery would be an answer for you. Now he is responsible to a large degree for what is happening, so you have every right to go back to look for plan B.

If you need to find another Primary care doc, start asking around for referrals. There are answers out there. You just have to look, and insist that you are heard.

Good luck. We're here to support and encourage...Keep us informed, and feel free to ask questions and vent your frustration!
Hang in there. There are answers, and you will recover.
Denise