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blamed for my condition, kicked to the curb again

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Posted 11/23/2011 11:00 PM (GMT 0)
I got told yesterday (blamed) that the only treatment for my chest pain after eating is  (1) I have to sit up straight when eating, although I wasn't asked if I do, and (2) endoscopy by my surgeon's minion PLUS a dilation.

Huh? I don't want a dilation! That defeats the purpose of the wrap.  I have chest pain from the stomach not being where it's supposed to be when I eat.  It's OK when the stomach's empty - on endo or scan.  Last year's barium swallow showed stomach partly above diaphragm.  My swallowing problem (just uncoated tablets and beef) isn't going to be fixed.  I had POLIO.  The weak swallow is in my record before the wrap.  That's why they did the Toupet instead of the Nissen.  I told him all this, but he insisted.  I would accept another endoscopy, but I don't trust them not to do the dilation against my wishes.

Although I went to a huge university center for the op, which was the right thing to do for a really bad case (GPEH) where experience counts a lot, I haven't seen the doc who reportedly did the procedure since a few days BEFORE the op.  This time it was another new resident I haven't seen before.  Drive an hour, wait 2 hours, see an incompetent, get kicked to the curb again.

I'm losing weight slowly, chest pain on eating or drinking anything is getting worse, higher up (sub sternum).  I'm getting a second opinion next month, but since I have gray hair I don't expect a different outcome.  I will call my new gastroenterologist for a review also, but he's so busy he doesn't even remember patients.  I can live like this, but it's not pleasant. 

Posted 11/24/2011 1:33 AM (GMT 0)
Hey Alcie,

I think I missed out on reading your post about this to begin with, but it sounds like you have a Nissen that failed (like mine). It didn't fail in the traditional way....that is, the actual esophogus was not having acid back up again (at first), but it caused major esophogeal spasms!!! Now...well I'm back where I started and even worse. I NEVER was able to give up the GERD meds and I have had to have the EGD (w/dilation) recently. Nothing has worked! After the dilation, my actual reflux with the fluid re-entering the esophagus has started again.

I don't mean to be negative, but I have yet to find an answer to what happenedl It appears I have to just live this way.....

I hope you will have a better result!
Posted 11/24/2011 3:52 AM (GMT 0)
I don't blame you for not trusting them, I wouldn't, so just if you can
wait unit next month for a second opinion....So very sorry your having
to go thru all this run around...Sure hope things will get better for you, many well wishes...
Keep us posted will be thinking of you, many Prayers...
Posted 11/24/2011 2:35 PM (GMT 0)
RetiredMom - You may have hit on something I didn't know about!  Esophageal spasms!  That could be part of why after tablets stick, it hurts even after I get them to go down.  My original testing showed esophagus spasming but now bad enough to prevent surgery.

I'm sure the wrap is working well enough, because I don't have a lot of heartburn.  But I'm also sure the hernia re-opened when I had a bad vomiting episode, just a little blood, 3 months after the original surgery.  That started pain which was just like, but not as intense as, the original sub-sternum pain when the seat belt shoved my stomach into my chest, which felt just like a heart attack.  Esophageal spasms could also be triggered when the stomach slides up through the diaphragm when I eat or drink.

I won't allow dilation because right now I don't need GERD meds.  There has to be something else! 

There are meds that stop esophageal spasms, heart meds, maybe something else.  I had to start a tiny dose of atenolol because I am getting tachycardia way too often.  My tach is generally triggered by the esophagus not liking foods containing sulfites, and I've been eating a bit too much junk food lately.  So far the atenolol is reducing the tach, but it's not doing anything for the chest or esophageal pain.  Maybe a different heart med or a higher dose, hmmm.

Chartreux - I truly appreciate well wishes and prayers.  I can wait.  I've been waiting for a cure for 2 years; another month is nothing.  We have to study our own problems, and this board helps a lot.

Posted 11/24/2011 9:22 PM (GMT 0)
Hopefully you find a way to actually treat it, rather than just being told anecdotal advice like to sit up straight while you eat.

So you have problems swallowing things, like pills too? I used to get that every time I swallowed pills, but I'm on an antacid now that actually helps. Plus, I found that swallowing with my head forward or 'down' actually helps to avoid that feeling. Though my esophagus is relatively normal, so I doubt it would help in your case even if you hadn't already tried it. (Since you mentioned the partial stoppage marked on the GI test.)

My neighbor had some issues with swallowing pills and it evolved actually, and she began to say that she 'couldn't eat'. Basically, every time she would eat she would think it was stuck in her chest. She takes anti-anxiety medication now, and it helped her. So in her case it seemed to be mental, though I guess the tranquilizing effect of the drug could possibly have helped 'relax' something if it was a physical issue though like spasms. Either way, it was bad enough for her whether it was physical or mental, or both, so I am sorry you're having the issues that you're having!

Sorry that I don't actually know much about these types of things, but I do wish you well and I hope you figure out what exactly is going on!
Posted 11/25/2011 4:41 PM (GMT 0)
Thanks, misterkatamari, for the suggestion about antidepressants for esophageal spasms.

I have been thinking of asking my PCP for a low dose of amitriptyline for depression. (pain doc wants me off tramadol, won't let me take 1 lousy mg diazepam for back spasms; shoulder pain not getting any better 2 months after surgery; sinus pain much worse after surgery, doc doesn't believe the deviated septum blocking the max sinus has anything to do with the chronic infections. Ribs, knee ... Stomach docs ... In other words pain not getting treated.)

Concern: pain doc me on Topamax. (I haven't tolerated any of many alternative pain meds.) It may interact with amitriptyline. I tried it in the summer and got hot, no sweating. I'm trying it again now, OK at 1/4 pill, but no pain relief.

Antacids didn't do anything for pain from swallowing pills for me in the past. PPIs did relieve stomach pain. I don't want to lower my stomach acid, not having reflux, although new gastrografin swallow showed it. I reacted very strongly to gastrografin, think it was esophageal spasms, as it was awful on beginning the first swallow. It was loaded with sweeteners and flavor, which contain sulfites - my worst reflux trigger. I had diarrhea for 8 hours afterwards, despite ignorant tech saying that wasn't possible. I should have gone to the ER instead of back to the test area. Couldn't get anything to stop it until I got to my paregoric at home. Then the surgeon who ordered the test said, "Oh yeah, that's what I use to clean out colons."
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