When does the dysphagia ever go away?

Hello all,

I suspect some have read my previous calls for help/sympathy on this forum. Now I have an update (and new issues).

Let me, as brief as I can, explain my story. I was teaching last year (teaching 42 students, that is) one day and by the end of the day had a bad sore throat. Because I had had a terrible cold and lost voice about two weeks before, I figured this would go away after the weekend. It didn't. The first doctor I saw said there was no problem--just the dry weather and teaching. The second one diagnosed me with a fungal infection. (Why? I have no idea.) When the anti-fungal medication didn't work, based on the inflammation of my throat, he suspected I had acid reflux. An endoscopy revealed that indeed my esophagus was inflamed. One PPI a day and traditional steps and diets didn't help. So after investigating I discovered that many people with LPR need 80 mg a day of PPIs. So I tried that for about four months but again found no luck.

I flew home for the summer and went to the prestigious Cleveland Clinic. After seeing five doctors--including a voice scientist, a laryngologist and GI--several tests (including the PH monitoring Bravo test) were used to "rule out" reflux. I was relieved. Their best guess was that it was neuropathy--or nerve damage. I was proscribed 400 mg of neurontin a day. But I then had to fly back overseas. I did not improve. The Clinic told me there was nothing they could do, that my symptoms didn't fit into a "clear diagnosis." My throat worsened--it began to feel like it was constricting, I began to feel daily heartburn, and I would go to the restroom in between classes to pour lidocaine down my throat to find even just ten minutes of relief. I thought I was beginning to have a breakdown.

Desperate, I flew back to NYC in October to the Voice Clinic of New York. The series of tests determined that the Cleveland Clinic was right and wrong--I had post viral vagal neuropathy (probably caused by that bad virus) and LPR. I was put on that special diet (which I've tried several times), climbed my way to 2400 mg of neurontin a day (don't try that unless your doctor suggests), and started using elavil, zantac, etc. The constricting went away, and after finally switching to Gaviscon Advance after meals, it seems like the heartburn has been minimized. But there are still some questions I have.

1. Why, oh why, does it take 4-6 months or longer for the treatment to work? My own guess is that it has something to do with taking a while for the "digestive juices" to shut down.

2. If anyone has ever suffered through dysphagia, when did it finally go away? Mine has been present virtually every day for almost a month.

3. I still--STILL--wake up with a sore throat almost every morning. That's despite not eating hours before bed, taking zantac and gaviscon before bed, elevating my bed, sleeping on my left side, etc. Any advice?

4. Did anyone have success with the Nissen surgery?

ANY thoughts, suggestions, advice would of course be appreciated. Thanks

Oh, one more thing. I've lost way, way too much weight; skin and bones now. Will try to gain weight on a low-acid diet.

UPDATE: I think the low-acid has helped, but I especially think that taking Gaviscon Advance has helped the most. I also avoid drinking before bed, something I had never done. The results are mostly good. I have had less sore throats in the morning (though I did have a slight on this morning), and while I still have occasional swallowing discomfort, the maddening constant sensation of difficulty swallowing is essentially gone.

LPR and PVVN (both of which I have) have cost me lots of money and comfort, but I keep fighting.

Jasper607, have you had any relief????

Hi lost sub
I have continued on my path to find an answer. I know there reasons for what has happened to my health. I have decided to go the chiropractic route for now. Recently I saw a NUCCA specialist. He is convinced the problem is in my upper cervical spine. All my symptoms can be caused by misalignment and the X-rays and testing showed I definitely have some problems there. Another thing I am doing is genetic testing. I got my results back and found out some useful info. I was actually looking to see if I had inherited the MTHFR genes because they can cause a lot of health issues. I didn't have that but did have something else. The liver needs choline and if the body doesn't produce enough choline and the body doesn't get it from diet then the deficiency can cause GERD and digestive problems. That could explain why antacids and PPI's didn't work for me. Never heard of that until the genetic testing and found out that I have the genes that don't produce enough choline and I don't eat many of the foods on the list that are high in choline. I am now supplementing with choline and some bile salts for the liver. Only been taking for 3 days but there might be a little improvement. I will continue on my way to regain my health for now and if I show great signs of improvement I will be sure to come back and share in the hopes that I may help some one else who is struggling with some of the same problems that I have.

my dysphagia went away in about 2 months but still have most of the other symptoms. my first month with dysphagia cost me 30 lbs.

There is a good book called "why your stomach needs acid". In my opinion stopping stomach acid sets you up for a cascade of other problems. Without stomach acid how can u break down the food and absorb the nutrients your body needs. Sometimes when we get older our bodies produce less acid. And low acid causes the same symptoms as too much acid and can relax the LES. Just saying I tried all the traditional approaches and nothing worked for me. (Diet,elevating the bed, PPI's, sleeping in a chair, eliminate the C's. Cola,coffee,caffeine,cocktails,citrus,carbonated drinks. I am not out of the woods yet but I feel a little better. It takes time to heal the damage. But I feel u need to find the cause and traditional medicine wants to just cover up the symptom. I know its tempting because of all the pain we are in but I want to find a cure and truly heal. There are so many people suffering with this disease it is dumbfounding to me and the standard American diet probably has a lot to do with it.

I have found that Peppermint spirits taken four times a day in 4oz water , especially before bed helps ease the swallowing problems. After all the test the Docs around my area ( Pittsfield Mass. ) said there was nothing they could do for esophageal spams , so I am waiting to get into Mass General hospital which has highly rated Docs specializing with swallowing problems. I drink high protein smoothies with ice cream and eat pureed chicken and fish , also mashed sweet potatoes in butter and maple syrup , cranberry sauce , cottage cheese etc. to keep up my weight. The feeling that something is always stuck in the throat and that something you swallow could get stuck is very depressing , I had never heard of this before it happened to me , and now finding so many others have this in one form or another is amazing. After the visit with Mass General I will report back. I am jimflutes from Stockbridge Mass.

I am suffering everything mentioned. I am 76 yrs. and have had a esophageaus dilation 6 times. Now my problem is in the throat. You cannot dilate the throat. Hard to swallow food and especially liquids. Getting skinny. Lost 10 lbs. in 3 weeks. When I have a little relief to swallow liquid, I try to get drunk as I can and I feel good for a while. Drunk also allows swallowing so therefore it is a mental/anxiety issue.....maybe?

The stories described here are very similar to mine. I had the Nissen fundoplication done, and things dramatically became worse after that. I am actually waiting to get the Nissen reverted.

For people suffering from LPR is very important to understand one thing: the symptoms in the throat are caused by 2 separate failed mechanisms: reflux of gastric content into the esophagus AND the inability of the esophagus to clear the refluxate. about 90% of patients suffering from LPR have some sort of dysmotility (either in the LES or in the peristaltic movement). Long term GERD can affect the functioning of the esophageal body, leading to poor clearance and longer residence time of reflux content. Tightening up the LES through a Nissen will only make much more difficult for the esophagus to clear the gastric content when reflux happens.

Another thing to consider: having gastric content reflux into the esophagus is normal and no medication or surgery will avoid that. A normal esophagus has the ability to clear the reflux out through secondary peristalsis (the one not triggered by swallowing). Normal people have up to 72 reflux events/day. Once again, any type of the dysmotility of the esophagus may impair the clearance.

Many times, doctor only treat one cause of the problem - they prescribe PPIs, which only decreases the acidity of the stomach. However, in patients with LPR, most of the reflux events are caused by non-acid (pH 4-7) content. That's also the reason that most LPR patients don't feel heartburn. The content in the esophagus can make its way up to the throat and irritate the tissues. This non-acidic refluxate also contains pepsin, which can bind to the throat tissue and lead to chronic inflammation.

I was diagnosed with LPR last year after suffering from GERD for 15 years. I had a Nissen Fundoplication despite a normal DeMeester score (=7, normal is <14.2) because no combination of PPIs or H2 blockers ever worked for me. However, my manometry showed that I had 100% failed peristalsis (>50% swallows with <30mm Hg pressure is considered abnormal). After the surgery, hell broke lose and symptoms increased to unbearable levels. That was a clear evidence that the main problem was a dysmotility issue, rather than an acid-reflux problem. My doctor has now suggested that I should either reverse the Nissen and treat the dysmotility with some medication (Domperidome, Bethanechol or Buspirone) or convert the Nissen to a partial 180 degree wrap. This would still give me some protection against reflux but improve the motility.

So, I urge anybody suffering from LPR-related problems to ask your doctor for a manometry test. This is the only test that can measure motility issues in the upper GI tract. The more data we gather with this test, more light we will be able to shed on the real causes of LPR.

I will keep you all posted.

Post Edited (RDP74) : 4/20/2016 1:15:32 PM (GMT-6)

Thank you and hope you have a great recovery! Please keep. Us apprised

@RDP74 Just wondering how you're doing? It's been almost 2 years since your last update