Waiting for TIF ..

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Regular Member

Date Joined Apr 2011
Total Posts : 377
   Posted 4/6/2012 6:52 PM (GMT -6)   
New people on this board may not know me, but I've been around on these boards (and have been suffering from GERD) for over a year now.

In summary - early on - my GERD was severe and now it is much less so. More of LPR (throat/mouth) symptoms during the first 8 months (first 3-4 months were pure hell) - and now mostly heartburn (chest) symptoms which are still quite bothersome but nothing compared to what they were doing to me back last spring. I could've easily tamed this beast, if I could tolerate the medications. However, I was a total mess on PPIs (prilosec, nexium, prevacid, protonix) and H2s caused other other issues - and I just could not stay on any of them. When I take the meds, I start to feel better in 3-4 days, but just can not stay on them .. as they start to give me terrible side effects.

Now, because I don't have severe GERD, I feel hesitant to go for the Nissen. I am therefore looking to get TIF done. However, my insurance is giving me a ton of issues. I am going through their appeal process right now and will just have to wait out the process. I know that they will deny me since they blindly follow their policies without giving any specific attention to the unique cases. I will then work with an independent medical reviewer and if even that fails, then I will file a lawsuit (already talking to some attorneys). I feel that the insurance companies have too much of a say in matters that should really be between the doctor and the patient. In my case, I am quite confident that I can prove why they are being negligent toward the well being of the ones they've insured (me) - by denying to cover this procedure. I am hoping, this can open the doors for the others and eventually all insurance companies will have to start to pay for patients who are in similar boat as mine.

Anyway .. one good news .. tried aciphex + klonopin combo today and the aciphex side effects were fairly reduced with the klonopin. I will keep this as my reserve option when the symptoms bother me too much - as I know I should not be taking klonopin too much!

Post Edited (PPI-LESS) : 4/6/2012 5:57:57 PM (GMT-6)

Regular Member

Date Joined Jan 2012
Total Posts : 158
   Posted 4/7/2012 10:22 AM (GMT -6)   
Hi PPI-less,
How long were you on ppis? How does the klonopin help you with the side effects? My worse side effects so far on the aciphex are the dry eyes, anxiety and the trouble sleeping with nightmares. How did you heal your esophagitis? I'm struggling for a very long time, but since i have gastritis also it seems that my stomach can not tolerate anything, not even supplements. Did you have the feeling like your stomach gets ice cold sometimes? I never had this feeling and its scary now that it happened every day for the past three days.

Regular Member

Date Joined Apr 2011
Total Posts : 377
   Posted 4/7/2012 1:12 PM (GMT -6)   
I was on the PPIs for about 4-5 weeks last spring. Majority of side effects that I get are related to the nervous system: anxiety, insomnia, tingling of the nerves, knee ache, back ache, muscle twitching etc. These grow as I continue to stay on them for >3-4 days. I think since klonopin is anti-anxiety, it probably calms the anxiety and the associated symptoms down - so likely reduces these neurologic side effects.

I don't have symptoms in the stomach - but heartburn symptoms around the chest (behind the breastbone) - burning / wet / achy feeling around that area. Sometimes, these symptoms move up to the throat and the mouth area and cause bitterness in the mouth and throat hurts during swallowing etc.

Elite Member

Date Joined Apr 2007
Total Posts : 32602
   Posted 4/7/2012 1:48 PM (GMT -6)   
FYI - benzodiazepines have the potential to relax the LES.
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.


"Life is not about waiting for the storms to pass...
It's about learning how to dance in the rain."~ Vivian Greene

Regular Member

Date Joined Jan 2012
Total Posts : 158
   Posted 4/8/2012 2:02 PM (GMT -6)   
PPI-LESS, how did you heal your esophagus if you couldn't take any ppis? I'm two aciphex a day and I still get very bad burning in my esophagus even with pills and diet. I just had some yogurt two days ago and I feel I'm back to where I was one month ago.
Maybe the aciphex is not working anymore. Shouldn't it take the heartburn away?

Veteran Member

Date Joined Apr 2011
Total Posts : 1604
   Posted 4/8/2012 2:29 PM (GMT -6)   
Hi ppi-less - still a few of us old timers around. Still missing Mock Turtle sadly; he's gone away to do battle with tinnitus :-(

Did you ever give GABA supplements a try?

Glad you've found a good fall back position, drug wise, and well done taking on the Insurance Company - it should of course be a clinical decision which is individual based. Keep us updated on the battle front!

I looked into LINX here in the UK but they turn you away if you already have Barretts (in the trial phase at any rate). Although for now I've been told I'm not bad enough for surgery anyway, so I just grit my teeth day by day!

New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma

Regular Member

Date Joined Apr 2011
Total Posts : 377
   Posted 4/8/2012 11:00 PM (GMT -6)   
Dany - my GERD is new and less severe - so, no esophagitis has been observed in my esophagus yet. When I realized I could not take any GERD medications and that the surgery was too big of a hammer for my situation, I found myself stuck in between two possible solutions - both beyond my reach: 1) the meds that I can not take, 2) surgery that may be too big a solution for me which may or may not work. I therefore, went through a dark phase of anxiety and depression (was suicidal as I was certain I would be leading the rest of my life in pain. Drugs were not helping me with my mental state). I saw at least 3 psychiatrist and a therapist. I was put on anti-depressants and neuro-drugs- that also gave me side effects. I decided to quit all meds .. and weeks passed and months passed and I kept going without the meds, with diet and went through a slew of supplements (gaba, acidgone, orange peel extract, slippery elm, probiotics, and seevral others) and natural things: (yoga, breathing exercises, acupuncture, voice therapy, hypnotherapy and anything else under the sun) - and kept hoping that my GERD might just go away one day.
My GERD has definitely reduced, however I've realized that this is not really going to go away for good. I do get some good days in between bad GERD days .. those good days are really what I live for. However, I know that my GERD is lurking in there. Once the esophagus<->LES<->Stomach balance is disturbed, statistics from the medical science indicates that this will not get fixed on its own and really is going to be a chronic condition which may wax and wane through ones life.

I feel the solution for GERD really goes in this order for most people:
1. Lifestyle / diet changes
2. Occasional H2s
3. PPIs for periods of time (off and on)
4. PPIs once a day for the rest of your life
5. PPIs twice a day for the rest of your life
6. Surgical intervention: TIF
7. Surgical intervention: Nissen or LINX

I've realized that 1-5 are not going to work for me. So, I have to try the #6 option here, which is what I am planning to do.

Dany - if 2 aciphex a day are not helping you, did you try switching to other PPI types? Prilosec, Nexium, Protonix, Prevacid and others? If none of these help you, then make sure you get manometry, endoscopy and pH testing done. If you have structural issues: hernia etc., then Nissen may be a good option for you.
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