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Thank you.
I thought it would be helpful to have a thread about the doctors who really know LPR and who have been the most useful to us.
Just list the name and city and state of any doctors that you would like to recommend to others in this community. Feel free to tell us why.
Philadelphia, Pennsylvania:
Dr. Sataloff - Have not been to him specifically, but have seen his partner who is just as good. I believe the practice was started by Sataloff, and
just yesterday had another doctor tell me that Satalof is known for being an ENT, but thinking like a gastroenterologist (or thinks he is a
gastroenterologist). Whatever he said, that's the kind of doctor an LPR patient needs. Huge reputation. 90% of practice is laryngeal patients.
Dr. Karen Lyons (Dr. Sataloff's partner). Used to practice surgery, but now does office visits only. Wonderful, compassionate, thorough, and
gives you lots of time. Terrific doctor in every way. Knows LPR inside and out.
Dr. David Katzka (UPENN Gastroenterologist): Considered to be very conservative (does not push surgery) and is very easy to talk to. Is a
gastro, but I believe he's in charge of the UPENN Swallowing Center. Only problem is getting in to see him - if you have an immediate problem,
he's not available. The wait is typically 2-5 months for an appointment unless you keep calling daily to inquire about cancellations.
New York City:
Dr. Anthony Jahn - ENT, I thought he is pretty good - well known for working with singers and he advocates alternative therapties like
accupuncture along with PPIs for LPR. I only saw him once, but if you have United Health Care, like me, and can't get in to see any of the other
top LPR docs, he may be one of your best choices.
New Haven, CT:
Eugenia Vining - Wonderful lady who I belive was also president of the Connecticut ENT Association. She was the first to diagnose my LPR and
recommended the right medicatiion right off the bat. There's a long wait for appointments with her.
In addition, I have the following names have come up repeatedly in my search for an LPR doctor:
1. Dr. Michael Goldrich, Edison/Highland Park, NJ. Recommended by Westminster Choir College in Princeton for students with voice problems.
The only doctor I've found in central Jersey who regularaly sees LPR patients, but doesn't accept my insurance.
2. Dr. Peak Woo, NYC, Also recommended by Westminster Choir College. Listed in Top Doctors. Ran the laryngeal neuropathy study I
discussed in another thread.
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Hey everyone I wanted to share my story to see if any of you have the same problem. After taking some pre-workout supplement
about 2 weeks ago I started having this heavy presence on my chest. Didnt really feel like a burning sensation like typical heartburn/reflux. So
after a few days of Pepcid and rolaids not helping and my anxiety kicking in thinking I was having a heart attack I went to the urgent care. They
ran a bunch of tests on me
Blood Pressure- 128/77
Checked my breathing- no issue
EKG- perfect
Chest Xray- Negative
So the doc said I probably pulled something at the gym and it will go away.
Week later im still feeling this pressure. Now im noticing that its mainly when I sit down it feels like something is laying on my chest. When I burp
or wiggle around it tends to loosen up a bit. I saw my primary and he said its nothing I pulled at the gym because he would be able to recreate
the pressure when i mimicked a movement that could of caused the feeling. He said its coming from behind the chest wall and wants me to get a
Upper GI Series and Abdominal Ultrasound.
Anyone else ever experience this feeling?
Heavy pressure on chest
Some relief when burping
Sometimes shortness of breathe
This is especially relevant to anyone whose LPR began in an acute way (you can remember the day all the symptoms started)
and especially, after or during a virus like a cold/flu or bronchitis.
However even if it began suddenly during a period of high stress or heavy binge drinking/smoking/aspirin, or if you had a surgical breathing tube
pulled out and it all began that day, this probably applies.
I don't believe we actually have reflux. Studies in the last 5 years are increasingly calling into question the "difficulty" of making an LPR
diagnosis, particularly since we mostly have no heartburn, no previous acid problems until the acute onset, no signs on barium swallow or
endoscopy. Well, that's because it's not reflux!
Don't you find it hard to believe that reflux is somehow causing these "injuries" which don't even show up on larynx exams, and acid and bile is
supposedly coming up, yet you can't feel it? That's funny, last time I vomited in my mouth, I kind of felt it. Half the stress of this disease is
knowing that your diagnosis is bunk. And there's a reason. Periodically, people have always showed refractory coughs, throat clearing, globus
problems, and there was no way to treat or explain it. So in the 1980s, a smart young doctor named Jamie Koufman started advocating "acid
reflux" as a waste basket diagnosis to treat all of these people. Somehow, it caught on in the larynology business and is pretty widespread, just
because usually doctors can solve a person's throat problems easily. When they can't and nothing really noticable shows up on the
exam......well........ it's reflux then, so take your ppis and don't come back to his office for a half a year! That will teach you, for having something
that doesn't show up on an exam.
This is, according to the most recent studies on laryngeal sensory neuropathy, a nerve related problem, caused by damage done by a virus or
idopathically (medical term for "who knows how") in the larynx. The larynx is then set off sending intense wrong messages to the brain, and
causing the larynx to overreact to anything causing the globus, the throat clearing, chronic cough, etc. So why are you taking ppis and why do
trained ENTs tell you something else? It's because the concept of laryngeal neuropathy has only been even vaguely known about for 10 years,
starting with Murray Morrison's paper on the irritable larynx syndrome in 1999.
You know the tell-tale red streak on the pharynx. More than 80 percent of healthy randomly selected people had that in a laryngoscopy
examination. The ppis work as well as placebos. In the last 5 years a lot of studies have been done, talking about laryngeal sensory neuropathy.
They treat it with drugs that help with pain and especially work on the vagus nerve (elavil, lyrica, neurontin) and the results are something like 70
percent to 90 percent of patients improving, even IF they don't show noticably motor dysfunction in the larynx.
Long story short, there are a number of articles you need to read on laryngeal sensory neuropathy, also known as post viral vagal neuropathy.
The symptoms of this disease sound......well...... a lot like the symptoms of your apparent LPR. There is hope for us getting out of the mess, but
I think you almost have to print this articles out and bring them to your next doctor's exam, if you don't have GERD. It's worth a try anyway. You
are already wasting money on the double ppis. Why not give small dosages of pregabalin 75mg or elavil 10mg a "trial". I bet you'll notice results
in less than a week.
So here are a few starter articles that you all must see. This is an article from "ENT today" in late 2008 that you can get by just searching "ENT
today pregabalin shows promise for treating laryngeal sensory nueropathy". Strangely, maybe because the stupid idea of LPR in people without
GERD or any signs of reflux in the esophagus, is so well-established now, they don't even really debunk LPR. But you'll notice the symptoms of
Laryngeal sensory neuropathy sound IDENTICAL to our bloody LPR.
Read that, and tell me it doesn't sound like those of you with an accute onset of LPR aren't rethinking this whole useless runaround you've been
doing for months and even years, wasting money and time on low acid diets and especially on the USELESS ppis.
Continue to search on the terms "laryngeal sensory neuropathy" or "post viral vagal neuropathy". Articles and abstracts will show up, about how
people with "chronic cough/globus/chronic throat clearing/chronic tickle in throat/laryngospasms" get relief with taking neuropathy drugs. The
important thing for doctors to determine if it is likely LSN, the articles say, is patient history. That means, if the patient suddenly came down with
a bunch of alternating, side-by-side throat symptoms during a cold, and never exhibited them before, and if the patient can remember more or
less the precise day of the onset, that means the doctor should highly suspect laryngeal sensory neuropathy.
Sometimes there is actual noticable movement dysfunction from it, like a paralyzed vocal fold or vocal chord, or you uvula moves abnormally.
That's called motor neuropathy. But more often, it's not detectable in that way, which means it's sensory neuropathy. The good news is that
BOTH kinds respond very highly to treatment with Gaba-a agonists and tricyclic anti-depressants, both of which calm down the vagus nerve.
The point is, these symptoms are identical to what we call the LPR symptoms, but really it has nothing to with reflux. It's a hyper-sensitive
misfiring larynx, it's nerves or a nerve damaged from the virus. If I knew all of this before, I would have been a lot more diligent with taking my
vitamin C and all that. I used to think colds were just harmless inconvenience. Now I'm afraid to get another one.
In one article I saw, 10 out of 10 patients who stayed on pregabalin had symptom relief of their Lp........ I mean, laryngeal sensory neuropathy.
How can this be? How do nerve drugs treat our invisible tiny drops of aerosole bile reflux? Jamie Koufman and others stick to the idea of LPR,
but you know there are many doctors out there who don't know about, and a lot of others who don't even believe in it.

I'm not a doctor or an expert. I'm just trying to find relief for myself and others suffering like me. But I think, the doctors would be in a better
position for treating patients if they knew more about laryngeal sensory neuropathy, and less about LPR and its so-called "treatments"...
One more article:
Evidence for Sensory Neuropathy and Pharmacologic Management by Scott M. Green and C. Blake Simpson (from 2010) . Notice how recent
all these articles are???

Based on the very high success rates for treatment of laryngeal sensory neuropathy, and the fact that the symptoms are identical to any sudden
onset LPR, I believe that this should be the first road of treatment.
There may actually be such a thing as LPR in people with reflux, and it may cause a bunch of non specific symptoms in the larynx. Maybe. The
problem is, we are all getting treated like we have acid reflux, and it's simply, totally FALSE. So please, educate yourself, bring these articles to
your next doctor's meeting, and if you get relief with neuropathic treatment, post it on these pages and help others who are going to keep coming
down with our problem in the future. And if it doesn't work, don't worry. The ppis don't work either. There's an article on that (2010 published)
that says placebos often beat PPIs in double blind studies that aren't funded by ppi makers.
Thanks for your time. And please for the future of people with our condition, do your utmost to get on a "trial" and inform your ENT. He probably
doesn't know or care about this, or he'd already have you on neuropathic drugs, so you would not be visiting his office all the time.
Best of luck. Let me know your feedback. Keep in mind, the reason you might not have heard about Laryngeal sensory neuropathy is because
it's a very new idea (with exciting results), and the waste-basket diagnosis of GERD/LPR in the face of ALL the evidence that it's wrong keeps
ENTs from moving in the right direction.
:
For the past 10 years ive had this horrible cough. I cough so much that it evenutally ends up in massive heartburn and pain. I
then get a lump in my throat and is horrible.
If i drank any spirits, fizzy pop or things lik that, id pay for it by getting nasty heartburn.
Cut along story short, after many hundreds of gaviscon bottles and tablets i got fed up and visitd my GP.
He gave me 20mg omerprazole and its sorted it out.
Ive just recovered from the terrible nova flu and left a lump in my throat. Ive started taking my tablets again and its getting better. I did eat a
sausage sarnie that got stuck in my throat for 24 hours and othr foods too, but ill put that to flu as im still not fully recoverd.
I don't hav a diet but omerprazole is the perfect drug for me. Hope this hlps others that have bad cough,heartburn,lump in throat. I can no drink
and eat anything and hav no pain.
Hey, I think I might have an acid reflux problem and I am trying Prilosec. How long before I start to feel to relief? Any ideas or
suggestions? Thanks so much for your time.
Hello all,
New here to the forum and just trying to figure out my LPR(constant mucus in back of throat, horseness, clearing throat,) and GERD symptoms
since this past July.
History - GERD diagnosed in Sept 2007.
After transferring to a new job position in April 2010 where I have experienced very high stress levels due to a difficult boss, I noticed an odd
feeling in the back of my throat in July.
I went to my family doctor who saw that my throat was red and gave me Dexilant 60MG 1x day. After a week or two, my symptoms had gone
away. I continued to take the Dexilant but after 3 to 4 weeks of being symptom free, the throat irritation and GERD came back in full force.
I went to my GI doc and had an EGD in which he saw a small hiatal hernia and gastritis in which he put me on Nexium 40MG 2 x day and
carafate.
I was also sent to an ENT who scoped me and noticed that my Larynx was pretty inflammed and diagnosed me with LPR and said the Nexium
will take care of it.
After 2 weeks all of my symptoms went away for about 3 to 4 weeks. But again have come back with constant mucus in the back of my throat
being the primary issue.
I went back to my gi doc who has now switched me to Protonix 40MG 2 x day but who did not at this time want to do a p H test since that is
preliminary to surgery which he said is usually not effective and he sees those patients back in his office a year or 2 after the surgery.
I'm just wondering why the ppis work for about a month and then completely stop??? Could the severe stress from work be contributing to this
problem?? Had anyone else experienced temporary relief from LPR after taking ppis and it comes back after a short amount of time? I'm
wondering if this is leading to surgery, which I really want to avoid at all cost, and trying to figure out what my next step will be.
Sorry for the long story but many thanks for those reading. Any advice support would be great right about now. Take care.
has anyone had the lump in throat and coughing so much that you vomit up undigested food. this could happen anywhere from
20 mins. up to 3 or 4 hours after eating. Also when i cough or sneeze my neck down to my back get a terrible shooting pain (kind of like hitting
your funny bone.)
i have had this problem for over 3 years now. I've had the swallow test as well as many other procedures to figure out what is causing this. I'm
at a crossroads because i don't like going out to eat in public because this could happen. It also happens when i go out in cold air.
HELP PLEASE
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