I developed excruciating pain in my neck, head, cheeks, ears in July 2009. I went from primary care Dr, to Pulminologist, to primary Dr to be finally told by the last Dr, after I impolored her that my pain had been severe for 4 months and the Flonase wasn't helping at all. The Dr. told me, "...keep taking the Flonase for two more months, and if it doesn't go away than frankly there is not much more we can do for you." Devasting to hear when you know something is wrong but you can tell the Dr thinks its all in your mind.
In the 4th month, I deceided that since all the Drs kept saying I had an allergy, I requested an allergist. To this day, I still don't understand why I have to request a allergist, why wouldn't a Dr refer me to one if they thought I had
allergies causing me such severe pain. The Allergist examined me and said, "You don't have
allergies, you have silent acid reflux." It took me a moment to comprehend what he was saing. Without anymore dialogue he gave me a book to read, ran oodles of tests, all of which came back that I had no
allergies and no other problems. He sent me back to my primary who I dropped and got a new one, who then tested me for H-Palori. It came back postivie & I was put on 2 antibiotic treatments to no avail. I was in horrific pain and approaching my 5th month with no relief and working without missing a day. Finally the new primary gave me a referral to a the ENT & GI. All this takes alot of time to obtain appts, while I suffered horrifically. The GI told me on the gernie after the scope that there was nothing wrong with my esophogus or stomach. I went to the ENT and she found that I was burnt in the throat almost to where it would have caused bleeding. They tried different PPIs. None worked but I ended up being on Nexium for 2 months at 40 mg x a day. In Feb 2010 I developed severe
pneumonia that did not respond to antibiotics. My GI told me he was sending me to surgery for a hernia/fundoplication, was giving me a PH study and that Nexium causes
pneumonia in 30% of patients who take it. The Nexium only gave me 40% relief. I was still suffering with horrible burning pain and now pnuemonia. I limped along and tried to stop the Nexium from Feb to May 2010 when I had the hernia/fundoplication. My new primary advised me quite concerned that I had the worst form of GERDS and that I had to take good care of myself. I had the fundoplicaiton in May 2010 and although I had no surgical problems from the escophogus down to the stomach I burned 10x worse in my throat than before surgery. In that period i retired and moved out of the area. I laid in bed trying to get a new GI and had to wait 4 months to get in. During that time I was incapacitated from the pain and lost 2 lbs a day. I was terrified as I couldn't eat and the pain was unbearable. I drove 1 hour to the ER of the HMO and to my surprise the Dr had no idea what Laryngopharyngeal Reflux was and called a psychatrist because I was crying and told them I couldn't take the pain anymore. Looking back I don't understand why an ENT or GI wasn't called for me. I have had this happen before. When they can't figure out what's wrong they think its a emotional/psychatric problem. I was put in psyc drugs and vicodin until they could get me into a ENT & GI in Sept 2010. The new GI advised that most Drs don't believe LPR exist. I was dumbfounded. That was the diagnoises I was given and my surgery was based on LPR. They put me on medication for intestinal problems. I burned to death worse! I got so angry about my care I demanded a new GI, that believed that LPR existed as a diagnoises and I wanted someone who knew how to treat it. I got a wonderful GI who looks at me and listens and a new ENT who told me even though the tests were negative on acid my clinical presentation showed I was burning severely, so much so, that he wanted to do a biopsy on it. So over the next two months they took me of Nexium as my PH score went from a 40 to a .4. The surgery technically was a success but my GI feels that the surgery may have unmasked a second problem. They gave me a new test that is more sensitive and it shows I have mildly acidic reflux & my GI feels that my fundoplciation is a tiny bit loose but the Drs don't want to do another more surgery to tighten the LES, as it is too dangerous. Quite by accident my neighbor told me to try probiotics in the 5 month and I started with Align, then moved to Bio-Kurt (which gave alot of relief but I was taking 10-5 pills a day). Recently, my Dr seeng that priobiotics was working better than Carafate gave me a prescription for a year on VSL#3 DL which I've been on for a week. I'm off all meds accept VSL#3 DL and it gives me about a 90% relief. I still feel that reflux hitting my throat but I have some quality of life now. I'm hoping a new treatment, LINX Anti-Reflux, to tighten the Lower Esophical Spinchter (LES) is promising. They are testing it around the world right now so I'm keeping my fingers crossed it is the cure I've been praying for. It has been a painful horrible 17 months. Hope this story helps some people out there. When I look back at what I went through, what stands out to me, is how little Drs really understand and really listen to their patients. They just hand you dangerous drugs without asking and studying each of their patients better. At the time I got sick I was ingesting wine, chocolate and calcium citrate late in the evenings. Didn't think much of it but suspect in retrospect, the concentration of wine and chocolate relaxed my spinchters and the calcium citrate, taken before going to bed, caused my LES to not close properly anymore. I've read extensively the medical periodicals on the web and it appears from my readings that researchers believe that up to 40% of the population has LPR but it goes undiagnoised for decades. Many Drs brush the patient off by saying its allegies or post nasal drip or its diagnosed and medicated for
asthma. I read that children, teenagers, young adults have this too but go undiagnosed for their whole lives. Bascically from what I read LPR is either gas or fine acidic spray that is not enough to burn the esophogus but on the throat is is devasting. The tissues of the throat are not made to get hit with hydrochoric acid. And LPR is not like regular GERDS. LPR happens all day long while GERDS is generally alot more acid hitting the esophogus or when your recline. Its a horrible anotomical illness and I'm so surprised not more is being done to find a way that really works to tighten the LES. Eating is the center of life and socializing. Its impacts eveything. I wish some great minds would work on this problem as fast as they could as the acid hitting your throat is unbearable painful and devasting for the patient and whole family.
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Add a Comment6 Comments
Anon - Thank you for sharing your story, and for providing so much helpful information about laryngopharyngeal reflux. It's painful to read about what you have been through to simply get to the right diagnosis and to get the care you need. Hopefully your comments will help keep someone else from having to go through the same thing.
It's wonderful to hear from individuals such as you who are not only advocating for themselves but who also see the need to advocate and educate on behalf of others. Thanks again and welcome to EmpowHER!
December 17, 2010 - 4:48pmPat
This Comment
Thank you Pat. The pain of LPR is horrible but one of the toughest things to deal with is when a Dr thinks its a mental problem and you know its not. It gets worse when they actually send you to a psychiatrist and give you psych drugs for a urgent physical condition. I'm not sure how I got through it. I've read some articles were people have died from it as Drs didn't know how to treat it or they just brush you off just to get you out of their office. A Dr should never tell a patient in horrible pain to keep taking medicine for 2 more months and if the pain doesn't go away than frankly there is not much more they can do. What a way to leave a patient. It is outragious. Part of me wants to write my medical organization but I know my letter will be thrown out and nothing will change. Its all about money and getting you in and out of the office, taking your premium, and not doing the right thing for the patient. I wonder if there are other people out there that have had similar experiences. I use to believe in Drs now I don't.
December 17, 2010 - 7:31pmI have been suffering from what I believe is LPR for 6 months now. I too have the horrible burning pain in my throat which is constant. I had an endoscopy done and they found a hiatus hernia and a loose LES which is probably what is causing the LPR. Thank you so much for sharing your story especially the part about having the fundoplication. I was convinced that the surgery would be the answer to my problems but your story has made me reconsider things.
I have tried all the PPI meds but they all make the burning worse for me. My GI doc simply did not believe that the PPI's were making my symptoms worse. I have also encountered many doctors that think the pain is all in my head and I have been told countless times that my problem is anxiety when my real problem is being in constant pain.
The 5th primary care doctor I saw has finally referred me to an ENT to 'reassure' me. I know the ENT will find acid burns when they examine me, however I do not hold out much hope that they will be able to do anything for the pain.
The trouble is that LPR is a fairly poorly understood condition. I think a lot of doctors are baffled by the condition but do not want to admit that apart from PPI meds, there is little the medical world knows what to do about this disease. I think this fear of the unknown world of LPR is leading a lot of doctors to diagnose things like anxiety rather than telling their patients that they don't know what to do. I certainly hope more research is done on this horrible disease as I am only 25 and am currently facing the prospect of a life in constant pain.
December 18, 2010 - 2:36pmResponding to the 25 yr old. I started this blog because I suspect that LPR is more widespread than we realize and our collective experience is not "unique". People are walking around diagnoised incorrectly or told that its an emotional problem. If your in horrific pain, months on end, it can make you lose your grip on life. I felt like I was falling apart and worked so hard to keep my life going, knowing all the while something was really wrong, but I couldn't get anyone to believe me. My heart goes out to you being only 25 yrs old and having LPR. If my experience can help you a little, try to keep you diet as akaline as possible. Not easy. Very difficult. Go for a second opinion on the hernia/fundoplication. It may help some people but in my opinion, for "simple atypical LPR", that does not respond to PPIs, you should weigh very heavily about having a fundoplicaton to fix it. It helps only 50% of the patients. LPR is a strange anatomical problem that is caused by either a gas or micro spray from the stomach, that escapes because the LES and perhaps the UES have lost their function of closing off the stomach. Its a real scary illness to have as its simply not good to have any acid hitting your throat. Even weak periodic acid hitting the throat causes devasting pain in the throat and throughout the head area, cheeks, ears, and neck. What I am trying the last two months is mega doses of probiotics. My neighbor told me about it when I was searing to death. Remember, that every time your throat gets hit with acid, it takes awhile for it to heal. LPR is reflux in an upright position. The throat gets hit between a few times a day or all day long. Hydrocholric acid on the tender tissues of the throat takes forever to heal. It's a burn. My throat burning was 10x worse after the fundoplication. From what I understand my LES is still a "little" loose after the fundoplicaton. Something is escaping. I have managed to bring the pain level down by mega dosing on probiotics and recently my GI Dr went ahead and wrote me a prescription for a year for VSL #3 DS (sorry I may have incorrectly blogged "DL" instead of "DS" earlier on the probiotic name). I've been on it about 1 week and I have had a small incremental improvement. I've been supplementing with the previous over the counter probiotic, Bio-Kult, that I used before the VSL. I am thinking of increasing from two pkgs a day of the VSL to three, as the last few days I have pain behind my eyes, nose and ears. The ENT scoped me few weeks back and said my throat is still red but he sees an improvement. He told me I would have to learn to live with this and manage it. I'm scared. I know from my research that if the throat stays chronically inflamed, if there is a cure someday, the tissues may always stay inflamed. I'm scared about having this for the next 30 years. For me I'm focused on a cure. I'm going to give it my best efforts for awhile to see if I can control the acid burn on the throat with mega doses of probiotics but if it doesn't work then I'm going to ask to go to a major hospital center and see a specialist. I stongely believe that if a way can be found to effectively make the LES close and open more effectively it will solve the problem. But it is hard for research Drs to make head way on new therapies when there is alot more money to be made selling PPIs. Sad truth, but money drives medicine. What is so sad about having LPR is that your are healthy. You just have an anotomical problem with the LES closing tight and so far there are no real good methods for getting it to work better. The surgeries out there aren't terrible effective. Lets hope that the LINX Anti-Reflux will be the best method yet in "curing" this horrible problem. We have to hang for for several years of testing and to receive government approval on it. I hope I can hang on and deal with the pain until then. Please check in from time to time.
December 18, 2010 - 5:38pmHi, thank you for this powerful andd truthful account of your experience with both lpr and the medical community. I have had the same experience and it has been deeply troubling and a challenge to survive. Many a night I pray to make it to morning only to pray again to make it to night, the suffering is indescribable,
Can you provide us with an update in hopes you are better or have learned something that might help us all...is the Val still working? Any new findings?
February 25, 2012 - 9:24amYou are not alone, I am battling still.
God bless you, Elisabeth
Hello,
April 26, 2012 - 2:46pmIts good to know Im not the only person suffering with this. My infection happen back in July 2011, from a tonsil breakout. I was prescribed Clindamycin by an ENT and after taking this med for two months, I had to stop due to a horrible outbreak. I stop taking the med and all of a sudden I starting experiencing this horrific burning sensation in my throat. I truly understand your story, only thing is, I didn't have to wait to be referred to a specialist. I was going to several ENTs until one finally said, I think you may need to see a GI Specialist, this was in November 2011. After taking plenty of antibiotics and steroids I was being prescribed PPI's & H2 Blockers, non was helping. Finally, in January 2012, I had an upper endoscopy done minus the monitor capsule to measure my acid. After my procedure, I told the specialist that Dexilant wasn't helping my symptom. He told me to continue taking them anyway. Leaving the office pissed, I did as I was told. Until finally, I started bugging the hell out of his nurse and they put me on omperazole. Omperazole wasnt helping much, so I met with the GI for a consultation to inform him the meds arent working and I need help. He tells me, sounds like you have severe classic case of GERD. Just keep taking the Omperazole for 2 months and we'll go from there to monitor how much acid is in your body. I was confused, Im just thinking to myself, what don't this specialist get? I am in pain and these meds are not working. After meeting w/ him I decided to try another ENT (w/ a GI background) and she informed me that she saw GERD on my vocal cords and that I have LPR and guess what she said, to continue taking the Omperazole. Really?! (These doctors are hilarious). I wasn't and haventnot gave up. I no longer deal with the first GI Specialist. I have a new Dr., who wrote me so many meds to take that after three days, the burning symptoms came back in no time. He then referred me to a new GI. This GI was nice, but to fast. He informed me that he understood everyone body is different and that he wanted me to try one other med before considering doing another Upper Endoscopy procedure, because from my first report it shows that I have a mild case of acid reflux . So I agreed to it. He put me on Carafate. It probably help for a week and a half before the burning returned. I called him and we scheduled for the 2nd procedure for next week. But, behold, I did some research because at this point, I was considering surgery, but after reading how many people suffer just as bad after the surgery, I threw this idea out the window. Come to find out its being said that the best way to cure this disease is to change your diet, which I have done, and to possibly consider curing this disease the natural way. I have not gone for my second procedure just yet. I have decided to work with a hollistic doctor, who highly understands my pain. I just met with her Monday, and she informed me about probiotic. I ordered it online since it was cheaper and Im hearing great reviews about this product and Im praying to God this stuff will help me out. Because I am tired of being in pain and popping pills, especially when they are not helping. To be honest with you all, I think the med causes the symptoms to be worse. So right now, Im just taking Nexium until this arrive. I pray for all of us who are suffering from this and will get well soon. I have to get off these meds. They arent doing anything and so isn't the doctors. Let us know how you are doing and I can keep you inform as well.