Posted 8/6/2017 11:08 AM (GMT -7)
I have been through the wars with LPR and live in NYC and thought others might be interested in my experience with various doctors who specialize in LPR in NYC.
I have had Chronic Fatigue Syndrome since 1998 and was diagnosed with LPR in 2007. My main symptoms have been chronic hoarseness, occasional globus sensation, and worsening chronic sinusitis. If I don't follow the LPR "protocol" and avoid eating 3 hours before bed, there is a 50/50 chance I will wake up the next day with a sinus infection. I stopped sleeping in a bed about 5 years ago and instead bought an Ekornes stressless chair recliner. I have slept in it at about a 45 degree angle ever since, as it seems to reduce the risk of sinus infections, hoarseness and globus sensation.
For LPR symptoms, I first went to see Dr. Jonathan Aviv in 2010. He is a pioneer who developed some of the testing equipment that is used to diagnose LPR. He accepts most insurance. He is a really nice guy, seems very knowledgeable, spends time talking to his patients, suffers from severe GERD himself, and has an excellent bedside manner. The first time I saw him, he diagnosed a granuloma (ulcer) on one of my vocal cords, as well as a moderate left vocal cord paresis. He noticed I had some swollen lymph nodes in my neck/throat area, so sent me for an MRI, which came back normal.
He put me on a PPI, told me to avoid all acidic and "problem foods" (coffee, citrus, vinegar, etc.), eat nothing and remain vertical for 3 hours before bed, and come back in two months to make sure the granuloma was not something more "sinister" (i.e. cancerous). That scared me, I followed his instructions to a T, went to bed starving every night for two months, and at my follow-up visit, the granuloma had fortunately healed and disappeared.
Aviv's approach is basically dietary modification and either PPIs or H2 blockers. He does not like his patients to be on PPIs long-term if avoidable, since long-term use can lead to some serious problems like bone loss, c. diff, and stomach polyps that some believe are pre-cancerous, etc. So his approach is dietary/lifestyle modification, H2 blockers like Pepcid, and watchful monitoring. When I asked him about a fundoplication, he strongly discouraged it. He said that with a vocal cord paresis, there was a good chance I would become, in his words, a "swallowing cripple", after the surgery. This means an inability to swallow and get food through the esophagus and into the stomach because of the vocal cord paresis. There is another surgery for reflux called the Stretta procedure. He said the evidence of its efficacy was mixed.
I then went to see Jamie Koufman, thinking Aviv's dietary modification and watchful waiting approach was too "laid back" and (in my anxious mind) designed to catch throat or esophageal cancer in its early stages. I also find it difficult not to eat at night. My entire time with CFS, I have very little to no appetite in the morning and early afternoon, sometimes feel nauseated in the morning, and only really develop an appetite in the late afternoon and evening.
I thought Koufman might take a more aggressive approach than Aviv, so I went to see her. She does not accept insurance, so you either pay out of pocket or her office will file out-of-network claims with your insurer. (If your out-of-network benefits are good, Koufman will accept whatever the insurer reimburses and won't balance bill you as long as she is paid "enough" by the insurer. This is actually illegal and insurers are beginning to crack down on out-of-network doctors who don't balance bill. The insurer naturally wants out-of-network MDs to charge patients more than in-network MDs in order to encourage patients to stay in-network. By not balance billing, Koufman was actually cheaper than Aviv, since I had to hand over a $20 co-pay to see him, but never paid anything to see Koufman. Insurers regard this as fraud and are increasingly cracking down on it through audits.)
Koufman ran a standard battery of tests for new patients - a nasal endoscopy/laryngoscopy, a 24-hour pH monitor, and a manometry test. For me, all were abnormal. Because my manometry was abnormal, she did an additional test where she sticks a needle at various points in your throat to check nerve functioning (or something to that effect). In her words, this test rules out brain tumors, lung cancer, and other cancers and diseases that cause certain patterns of nerve damage. That test was normal in my case, fortunately. So her diagnosis was LPR and "post-viral vagal neuropathy", her term for what other MD's call a vocal fold paresis. My insurance reimbursed her about $15,000 for these tests, by the way, and I paid nothing to see her. If you don't have good insurance, get ready to write some big checks. It is not a surprise she only works a few days a week and spends her other days out either golfing or traveling. (She told me this.)
Her approach seems a little bit more aggressive than Aviv's. She prescribed Neurontin and amitryptiline, which are supposed to reverse nerve damage, a 30-day course of a PPI, and even more strict dietary modification. She wants LPR patients to not eat and remain vertical for four rather than three hours prior to bed. So if you go to bed at 10PM, your last morsel of food is supposed to be at 6PM. She recommends Gaviscon Advance at night before bed. This has to be bought on eBay or Amazon from UK sellers, because it is not available in the US for some mysterious reason. She also recommends an organic, simple diet that consists of lots of green vegetables, organic poultry (no beef or pork), no sweets, etc. She says she follows this diet herself, although I suspect she can afford a private chef given how much dough she is raking in.
I continued to see Koufman on and off for about two years. If I followed her diet very strictly, my LPR improved and my nasal endoscopies showed less inflammation in my throat when I adhered to all her recommendations to the letter. My "reflux score" -- her personal subjective grading system -- dropped from a high of 17 to a low of 7. My problem with her approach was weight loss -- I was basically losing about 5 pounds a week on her diet. According to Aviv, it is fairly common to lose about 1 pound per day every time you stop all food intake four hours before bed. So for thin people like myself, this can be problematic. My weight fell from about 170 lbs before I started Koufman's protocol to a low of 143 lbs. I am 6 feet tall, so 143 lbs is close to being underweight.
If I ate more during the day and closer to bedtime in order to maintain my weight, my Koufman reflux score would go back up. The Neurontin Koufman prescribed didn't seem to do much except make me feel high and voraciously hungry. Maybe it improves nerve function, but it is definitely not a magic bullet. At each visit, Koufman seemed disappointed in my progress under her protocol and seemed to dismiss me as her patient. She actually said, "I don't know what to do with you" and said she would email me with suggestions for next steps, which she never did. Overall, I think she received about $40,000 from my insurance for spending a sum total of about two hours with me. She also has a fairly awful bedside manner and a bit of a God complex, in my view.
If her protocol doesn't seem to work, it is the patient's fault, not hers. She doesn't talk to other doctors and claims she is the only one who understands LPR. She regarded me as a treatment failure, so I stopped seeing her in mid-2016.
OK, so Koufman and Aviv basically follow the same approach, except Koufman's dietary modifications are more severe than Aviv's, Koufman adds Neurontin to the mix, and she has a lousy bedside manner, the polar opposite of Aviv. Fundoplication seems to be off the table if you have a neuropathy that affects your vocal cords and esophagus, and it seems that a lot of patients with LPR also have neuropathies.
This spring, another doctor, my allergist, wanted me to have a chest CT scan because he heard some "crackling" in my lungs through his stethoscope during a routine physical. The CT scan diagnosed mild bronchiectasis. This is a scary lung disease, because it can be progressive and if progressive can lead to either a lung transplant or a miserable death...pretty scary. My allergist wanted to put me on IVIG permanently to prevent bronchitis and pneumonia that would worsen the bronchiectasis over time. The catch was that I would probably need to pay for it out of pocket, because IVIG is not a standard treatment for bronchiectasis for those with normal IGG levels. IVIG costs about $80K per year, so that didn't seem feasible for me in the long-run to me.
I made the decision to get a second opinion pretty quickly and got in to see the head of pulmonology at Weill Cornell, Dr. Fernando Martinez. This was a good decision. He is a fantastic doctor -- he accepts insurance, he spent a long time talking to me about my CT scan results, which he had studied carefully himself before my visit, he spent about 45 minutes discussing my medical history and my current symptoms, and he wrote the most complete set of medical notes of any doctor I have ever seen. His office sent his visit notes to every other doctor involved in past treatment -- Aviv, Koufman, my allergist, and my PCP. He said my CT scan was equivocal. He said 50% of radiologists would say I have very subtle bronchiectasis and the other 50% would say I have very mild bronchiectasis. He said he would call Koufman to discuss my history and her findings. At my follow-up visit, he said she never returned any of his phone calls, which tells you something about Koufman.
He recommended that I go to see Dr. Phil Katz, a reflux and esophageal motility expert recently recruited to Weill Cornell, for an evaluation. Prior to seeing Katz, I went back to Aviv for a regular follow-up. Aviv said that Katz is brillian (a "savant") who is at the forefront of medical research on reflux and LPR. He used to be based at a smaller practice in Philadelphia, so he is not as well-known as Aviv or Kaufman. But Aviv, at least, seemed somewhat in awe of Katz and said I should get in to see him ASAP.
I went to see Katz about two months ago. He used to work with Koufman and was fairly dismissive of her and her approach. He said some of her research is regarded as questionable among LPR and reflux experts. In particular, he said that the 24-hour pH test Koufman uses is not really the gold standard anymore and can sometimes give false positive or false negative results. (The 24-hour pH test involves threading a pH monitor about the width of a coffee stirrer through your nose, down your throat, and into your stomach, and leaving it in place for 24 hours. It is quite uncomfortable and seems to interfere with swallowing. Acccording to Katz, some research suggests that this test doesn't last long enough and is too invasive. As a result, it can lead to mistaken diagnoses -- false positives and false negatives.)
Katz recommended that I have an upper endoscopy, during which he would affix a Bravo pH monitor to my esophagus. The Bravo pH monitor measures the number and severity of reflux incidents over 4 days. The monitor generally is barely noticeable while it is in place, falls off your esophagus in 4 to 7 days, and gives a more complete and unbiased picture than a 24-hour pH monitor because it is much less invasive and measures reflux over a longer period than the 24-hour study Koufman uses. He then said that if the Bravo test showed significant reflux and my future manometry test was close enough to normal, then he would recommend I have surgery to implant the Linx anti-reflux device. He said it has far fewer side effects than fundoplication and completely cures about 75% of patients with LPR (90% with traditional heartburn-type GERD). I asked him about the Stretta procedure, which Koufman sometimes recommends. He said that he was not impressed by either the research on Stretta or by the feedback he has received from patients who had come to him after having the Stretta.
In any case, I had the Bravo test done. The Bravo pH monitor was not noticeable except when swallowing, when it created a mild globus sensation. It did apparently fall off after about 5 or 6 days after it was implanted in my case. I have a follow-up with him this coming Wednesday to discuss the results and next steps. Dr. Martinez, my pulmonologist, said he would discuss my case with Katz and that he and I would have a lengthy discussion about the pros and cons of surgery if I am a candidate for the Linx procedure.
Sorry to have made this into an epic post. I think my main points are as follows: (1) Koufman charges a fortune, tells you to change when and what you eat, and prescribes Neurontin as if it is a miracle drug (it is not). I am not sure this is worth the price, unless you have really good health insurance or money to burn. (2) Aviv is a good doctor who is less expensive and nicer than Koufman, who recommends the same protocol as Koufman sans the Neurontin (3) there is a new gastroenterologist in NYC, Philip Katz, who seems to be very highly regarded in the field, is at the cutting edge of diagnosis and treatment, and accepts insurance.
I will post again after I see Katz on Wednesday if others are interested. Thanks for reading!