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joe1619
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Date Joined Dec 2009
Total Posts : 293
   Posted 7/30/2010 4:21 PM (GMT -6)   
So i was ready to schedule surgery but i am getting cold feet. i have a very burned larynx from acid but many people say fundo does not help clear throat symptoms let throat heal. has anyone seen a burned throat with constant throat clearing(mucous to protect burn). i am petrified of doing a maybe surgery and deal with the symptoms of the new stomach any advice please help

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/30/2010 6:05 PM (GMT -6)   
I had a mucous filled throat before my surgery. Whoever said it won't go away forget them.

My only post surgery symptom once my healing was done (about 3 months total) is a little gas. It's slowly fading away here at 7 months.

Don't freak out. It will be worth it. Anything is better than feeling like you're doing now, right?

My doctor was a nay sayer for me. "It won't help you. It's going to take months of healing, meanwhile your going to be hurting."

None of that happened. I believe he was giving worse case senerio.


Joy

joe1619
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Date Joined Dec 2009
Total Posts : 293
   Posted 7/30/2010 6:29 PM (GMT -6)   
joy, so i am an anxious person, that is waht i was told horrible pain, atypical symptoms only better 10% of time. I am miserable throat hurts and has been very red for 2 years probe shows acid to throat even on 2 ppis and barium shows reflux to clavicle. surgeon is confident and can do any wrap 180, 270 or 360 but gi doc doesnt think it will help. did you have a sore or red throat. also is mucous the bodies defense mechanism and that is why it wont leave

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 7/30/2010 6:35 PM (GMT -6)   
My throat was very irritated. I felt like I had to clear my throat before I could speak and then clear every few seconds.
My GI didn't think it would help either, but it did!

I had very little pain during my recovery.
Joy

Problems too numerous to name. :)

stkitt
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Date Joined Apr 2007
Total Posts : 32602
   Posted 7/30/2010 7:51 PM (GMT -6)   
Joe,
 
The final decision is yours and perhaps getting one more opinion from another surgeon will reduce your fears.  You do sound like you are pretty miserable now and if you have the opportnity to feel better I think you should seriously consider having the surgery.
 
JMHO. 
~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Herat/Cardiovascular Disease.
~Today is the tomorrow we worried about yesterday~

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5028
   Posted 7/30/2010 7:59 PM (GMT -6)   
I had only a partial wrap, but I have no reflux anymore, and don't use acid reducers either. Let your surgeon decide on the amount of wrap you will tolerate, based on the manometry testing. Basically that means you get wrapped tight enough, but not so tight that you can't swallow past it. I have a very wek swallow - hence the partial wrap.

I can't see why a proper surgery wouldn't stop the reflux that is causing the sore throat.

Yes, it takes 3 months for most people to heal. So what?

You said you have atypical symptoms. Is there anything besides the sore throat?

Have you asked your surgeon what his rate of success is? Mine has a rate in the very high 90's.

My only serious complaint is gas. Since I don't burp hardly at all, I do have a problem with gas-producing foods like legumes and lots of vegetables. I didn't mind giving up most of my bread. I've been trying to add vegetables, but so far haven't had much success - 9 months out. Better than a constant sore throat!
Alcie
 
 

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 7/31/2010 9:07 PM (GMT -6)   
alcie, constant throat clearing, very red/burned larynx that it now hurts to swallow. drink so much i cant leave bathroom or sleep. i am not suicidal, but man i dont know if i can continue with this pain..worse pain ever and it is constant. some minor heartburn. 24 hour probe showed lots of reflux on ppis and 18 made it to throat..throat can only handle like 1 a week they say..gi docs say im fine, ents disagree

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 7/31/2010 9:10 PM (GMT -6)   
skitt so my family says i should go for it as i am so miserable. i actually consulted a therapist and he says the risk is to high with a murky reward at best. talked with a surgeon today former director of surgery at the univ of ia, with harvard credentials. she no longer does this but is referring me to 2 colleagues. i hope they can help. thanks for the feedback

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/31/2010 9:21 PM (GMT -6)   
Did the therapist have gerd? No one know how to advise on the surgery unless they have gone through it.

Joe ask yourself: in three months where will you be? The same or better.

Even if you go through the surgery and it fails even a little, atleast it's better than where you are now. Take that leap of faith.
Joy

Problems too numerous to name. :)

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5028
   Posted 7/31/2010 9:27 PM (GMT -6)   
Joe - They let you have ppi's with the probe?  That's totally not standard.  I had to be off everything for a week the first time and 10 days the second time I prepped for the probe.  Plus being off for 2 days with the nasty capsule pinned in place.
The 24 hour probe is to measure acid.  Manometry measures strength of your swallow.
 
Somebody doesn't know what's going on here.  Maybe they didn't explain to you what they were doing, of maybe they don't do things the standard way.  Either way I'd get a second opinion.
 
For one thing a gastroenterologist isn't a surgeon.  Did you see a gastro or a surgeon?  It makes a lot of difference.
Alcie
 
 

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/31/2010 9:35 PM (GMT -6)   
My doctor let me stay on my PPIs and H2 blocker. He figured if he took me off of them my lungs would get more damaged. Maybe his doctor believed the same. My doctor is considered the top GI in north GA. Even other GIs go to him for treatment.
Joy

Problems too numerous to name. :)

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 8/1/2010 9:23 AM (GMT -6)   
the therapist never had gerd told me to deal with it and not worry said its like tinnitus no cure. as far as the acid pills we stayed on them to see if they were working. that was done by a gi. the one surgeon said the test means nothing now because the gi did not do it right. i have a second opinion on friday. got email from a doc a few minutes ago..email is wonderful. but on the ppis i had 20-30 episodes of reflux ph under 4, most happening during the day when upright. demeester was normal so gi calls the ent an idiot regarding my throat and said my esophoghus is fine. ent said lpr is a disease and said 20 episodes of acid to the throat in 24 hours is 23 too many. he said i needed surgery. he sent me to a friend surgeon 2 months ago who said he does not believe in atypical symptoms being caused by reflux in spite of the dual probe. this is all so confusing/frustarting. i cannot sleep and am very thin. i went so long without a diagnosis because in cedar rapids iowa the doctors are not knowledgable about reflux, and they almost all say lpr is not even real. the only surgeon who seems to understand the disease does operation in 20 minutes. i am thankful for those who have explained their atypical symptoms are better most things i have read people claim their ent symptoms are not improved and they regret surgery. one person explained with us upright refluxers its more the upper esophgeal sphincter and i dont thing you can fix that. all comments are welcome and appreciated it is so nice to talk with real people facing this

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/1/2010 2:43 PM (GMT -6)   
I remember my surgeon telling me that GIs are just beginning to recognize the connection between Gerd and ENT problems. It's still beginning to be recognized as a symptom of GERD. There are some who are still thinking "old school" ways that Gerd is heartburn only.

Listen to your surgeon. My surgeon told me he could do the surgery in 20-30 minutes. I watched a video of the surgery on the internet. Once the patient was sedated and prepped, the doctor did the actual surgery in 30 minutes laproscopically.

You will do okay, believe me. Relax...
Joy

Problems too numerous to name. :)

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 8/1/2010 2:56 PM (GMT -6)   
joy, do you think esoph-x is worth a shot. i called folks in ga and i have a small hernia so wonder if it would help. do mot like thought of fundo. good to know on 30 minute thing. most say 1-2 hrs who else does esoph-x. i heard not very effective

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/1/2010 3:04 PM (GMT -6)   
I'm hearing more and more of the esophyx surgeries failing.
What bothers you about the fundo? Maybe I can help put your fears to rest?
Joy

Problems too numerous to name. :)

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 8/1/2010 3:08 PM (GMT -6)   
i feel like i am choking now and my throat hurts, at times it is hard to swallow. i do not know if i can handle more swallowing issues from fundo. if i would have done this when symptoms were not so bad but docs kept jacking me around i too want esophx but not if it does not work. i am so desperate and scared i am irrationally considering stem cellss overseas. the one doc from spain offered me fundo, but that is too far for that..for stem cells to grow new throat tissue i am all for. i am turning crazy

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/1/2010 3:29 PM (GMT -6)   
I think your swallowing issues will be helped when you stop the acid from getting into your throat. Mine became so much better after my surgery.
Joy

Problems too numerous to name. :)

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 8/1/2010 4:57 PM (GMT -6)   
joy, how is your eating i did talk with your surgeon and have a call out my reservation is ga to ia, but in ia i can only find one doc whos done a lot of fundos. hes been sued 6 times, not sure if thats bad for a surgeon and met 1 person with a horror story the people at a local univ messed me up with meds during endoscopy that literalyl about killed me. i told them not to use so my trust is minimal. also, did you feel like you were choking/gagging on the mucous its horrid and it got better i think the throat clearing is hurting my throat worse

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/1/2010 5:57 PM (GMT -6)   
Yes, I was choking/gagging on the mucus.
The traveling is hard to do, but for me it was well worth it. He is a superior surgeon.

I eat anything I want. The other night I had laid down to sleep and my stomache started growling. In the past, I'd just suffer. But I got up and drank some fruit juice (a past no-no) and laid down to sleep. I had no trouble at all.

The hospital staff that he works with was wonderful. The nicest nurses and doctors were there. They're wonderful about bringing the liquid diet he requires for the first weeks.

I did my follow-up on the phone with his nurse, instead of having to drive back to see him.
Joy

Problems too numerous to name. :)

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 8/2/2010 5:10 PM (GMT -6)   
joy my surgeon says 99% success does that sound too good to be true

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/2/2010 5:50 PM (GMT -6)   
Nope. I think that's wonderful. That's if he's done a 1,000 only ten had trouble.
Joy

Problems too numerous to name. :)

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 8/6/2010 7:54 AM (GMT -6)   
joy, some say those with throat issues wont be helped because we have a badd upper sphincter too. do you know anything about this

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/6/2010 5:57 PM (GMT -6)   
The only sphincter I'm aware of is the one above my stomach and below my stomach.
Now the LES, if it is bad the acid is flowing up. If the lower one is weak it's going down. The flap over our esophagus I am told is a weak one. If something is coming up there is no resistant. Everything's fair game once it reaches it.
With me it was my lungs and vocal cords getting damaged.
Joy

Problems too numerous to name. :)

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 8/7/2010 7:43 AM (GMT -6)   
Joe,
Everyone handles the Nissen surgery differently, and if you go into it with your eyes wide open, knowing the risks and benefits, accepting the reality of the first months of healing, and allowing yourself to heal without feeling like you need to rush it, you will do just fine.

As you've read here many times, it's very important to choose an experienced surgeon (in this particular surgery), because your surgeon, and your attitude and acceptance of the changes that occur in your GI tract, are the most critical pieces to the recovery puzzle.

I had "atypical symptoms" as well. The docs who really knew me (asthma and family) were certain that they were being caused by GERD and would be improved with surgery.

My GI doc/s went by the tests (my first 24 PH monitor was 4 and my second, 2 years later, was 14) While my GI doc told me after my first test that reflux wasn't causing my asthma to be worse, my doctor disagreed. I was in no hurry for the surgery, because like you, I'd looked on the internet and seen the typical horror stories and people warning me not to ever have the surgery.

In addition, like your therapist, my first GI doc was very negative on the surgery--saying that half the people still have to take PPI's after the Nissen, and the new procedures were untested, and it was too soon to recommend them.

My lungs (asthma is considered an atypical GERD symptom) continued to deteriorate. After more "doctor on doctor" communication, my GI doc finally admitted that probably very little acid or bile could affect my lungs, and said I could either continue on meds (totally ineffective for my asthma emergency) or talk with a surgeon. At this point, after high doses of prednosone and inhaled steroids (my adrenal glands are still not working because of it) I decided I had to talk to a surgeon, so I did. I decided that I couldn't go on the way I was, and after talking with the surgeon made the decision to have the surgery. I felt I had to give it a try. If it didn't work, then I'd look elsewhere for answers.

Unfortunately, I waited too long for the surgery and my lungs were in such bad shape that I was coughing before during (I had a nebulizer treatment just before surgery and was given asthma meds through the anesthesia tube) that I actually ended up doing damage to my wrap. My internal tissues were so fragile (from the steroids) that my coughing was able to pull something loose. Because of this, I've had some return of reflux.

That said, even with the reflux, my lungs have been better post surgery than they had been for the previous four years. I no longer had to nebulize daily, and I wasn't coughing and wheezing nonstop. In addition, I was able to tolerate viruses better (they put me into very bad wheezing and coughing before my surgery--often requiring steroid treatment).

I may have to have my surgery redone at some point because of what happened due to my coughing and steroid use.

I would give anything to be able to have acted sooner and avoided the damage to my adrenal glands and my body in general. Hindsight is 20-20, but in my defense, my GI docs did not give me any support at all, and rather, discouraged me from going forward for those four years as my health worsened.

I have a new asthma doctor now (we moved recently) and when I asked him to refer me to a GI doc, he shook his head and said he didn't like any of them. He told me that they have no understanding of the connection between asthma and GERD. He complained that all they do is "test, test, test".

The docs and surgeon told me that the cure rate for "atypical" GERD symptoms was much lower, and that while the surgery might help me, there was no guarantee. I went forward anyway, and although I've had some complications, and am glad I did. My health would be much worse now if I hadn't.

If I am recommended for a redo, I will definitely go for it. I really have no other option. My asthma doctor is trying to get me straightened around with meds, but if that doesn't work, I wouldn't be at all surprised if he sent me back to the GI and surgeon.

So, long story short...yes, atypical symptoms CAN be improved by surgery. Yes, people often need to go back on some PPI's, but even those people are most often in much better shape than they were prior to surgery, and are glad they had it.

Keep in mind that most people who have the surgery don't bother to post online. They go on with their lives, and enjoy the improvement in their health. People who had the surgery done by incompetent surgeons can have horrible side effects, and therefore go online to search for answers.

I'm not sure I would have had the courage to go forward with my surgery if I hadn't met the fine people on this forum, who presented a positive, but realistic picture of the surgery and its results. I believe I owe my friends on this forum my life!

Good luck with your decision. As Kitt said, you're the only one who can decide what's right for you. It doesn't sound like you're ready to have the surgery. If you went forward with your anxiety and negative attitude, I'm afraid you would not be satisfied with the results. You have to really want it, and be willing to accept whatever happens. You need to feel that the way you feel now is not something you can sustain forever, and whatever happens with the surgery, it's a risk you must take, because you've exhausted all other possibilities.

I've read posts here and elsewhere by people who went into the surgery thinking that they'd be made whole again and come out feeling like they did before they had any problems at all. Not so. This surgery is a fix that can create some other inconvenient symptoms. For me, those inconvenienced are nothing, compared to what I was living with before the surgery.

Kitt suggested seeing other doctors and surgeons to discuss this. Keep in mind that many have been helped with hoarseness and breathing problems even though you'll be told that there are no guarantees. There are no guarantees on anything in life. You'll just have to decide if you're ready to give the surgery a try, and accept whatever the results are for you. I didn't really think I had a choice. I needed to suck it up and see if it helped. It has, although my case is very complicated.

If I had been braver and had the surgery before I'd been on all those steroids, I would have avoided a multitude of health problems. As I said before, "hindsight is 20-20"--woulda, shoulda, coulda...it is as it is. At least in the end I went forward with the surgery, and had the right attitude to ensure a positive recovery experience.

Good luck with your decision, Joe!
We're here to talk and help you work through your insecurities! We've all been where you are.
Take care,
Denise

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 8/7/2010 5:30 PM (GMT -6)   
denise, you know me very well. i too have been strung along and the surgeon says gi/ent people should have acted sooner and now i also suffer worse and some will never improve. i just wish it was straightforward, surgery..fixed. i am bitter i guess but am tired of this but am afraid. i know that every day i worsen and only wish i had that crystal ball i know about wanting redos and gripe woulda coulda all day but i probably have to give this a shot my family says its worth it and to believe i will get better. also afraid of not eating as i am paper thin due to insomnia, anxiety and not eating because of lpr
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