Koufman Reflux center or Mayo Clinic

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TheSiXness
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   Posted 7/29/2013 6:51 PM (GMT -6)   
Hey guys, I was wonder which place would be better to go to for treatment. I for the most part have LPR symptoms, but I just want to go to the place thats going to be the most effective at this point. I've been in contact with mayo clinic mn and the voice institute of new york reflux center. Anyways, which one do you think would be better to attend? Don't think I'll be able to take enough vacation for both lol

TheSiXness
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   Posted 7/29/2013 8:46 PM (GMT -6)   
or arguably, what is the best reflux center in America?
-TheSixness-

DOGGBONES
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   Posted 7/30/2013 5:55 AM (GMT -6)   
This choice is easy........Mayo! Mayo accepts insurance and isn't busy out selling books. They have some of the best medical staff as well.

TheSiXness
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   Posted 7/30/2013 7:42 AM (GMT -6)   
Koufmans reflux center doesnt accept insurance? I have cigna and wea trust ppo, i know on their website it says they accept cigna? Dont think i'll go their if im getting billed 10,000 dollars...

DOGGBONES
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   Posted 7/30/2013 8:40 AM (GMT -6)   
I haven't been to Koufman myself, I'm only going by what a few others have said. Last I knew, she did not accept insurance and it was $500 just for the office visit.....now maybe things have changed. What I do know is the members here that did go see her did not go back.
 
To me, there's just nothing to compare......Mayo has some of the best GI's in the states! I could be wrong but I thought at some point in time Koufman had nissen surgery as well. To be honest, I question weather Koufman is more focused on making money selling books etc... verses actually helping people.
 
Don't you have the "TIF" issue? I don't believe she can do anything in regards to helping you with that. She'll do a double probe on you to confirm LPR, then tell you to eat her low acid/low fat diet and buy her book.
 
I you have one chance......go Mayo my friend!

TheSiXness
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   Posted 7/30/2013 12:28 PM (GMT -6)   
At this time the only thing a doctor could do for me is confirming that the TIF is the reason i have become signficantly worse and then provide me the nissen surgery. A double probe would prove my point and my breathing issues and lpr. I still have my appointment to mayo. For whatever reason, i have just thought koufman was the best because she coined the name lpr.
-TheSixness-

opnwhl4
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   Posted 7/30/2013 2:33 PM (GMT -6)   
TheSixness

Please take this as from a surgeon who helped me tremendously. The surgeon who did my 1st redo, that I would still be on if it hadn't been for the esophagus tear. He said the #1 place is USC, then the Cleveland Clinic. HE placed Mayo near the middle for GI issues. I know we have several members who have been to USC and the Cleveland Clinic.

I was going to see about Mayo when I was referred to my surgeon at Loyola and he told me how he would rank the different places around the country. Granted he trained at USC and may have been bias, but I do know one of the surgeons there has been at the forefront of the latest Nissen surgical advances.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

ethanol
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Date Joined Jul 2013
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   Posted 7/30/2013 3:10 PM (GMT -6)   
I'm facing the same question. I live in New York so it seemed the obvious choice was Koufman. But I called and she said unless I have out of network benefits I have to pay. Which is something I cannot afford.

As I understand it, the Mayo clinic means going to Arizona.

TheSixness are you based in NY too?

TheSiXness
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   Posted 7/30/2013 6:47 PM (GMT -6)   
opnwhl4

I'll have to look into both USC and Cleveland clinic. I know Cleveland clinic has a very informational website that I use often. USC, does sound pretty good, I'll have to look into that a little bit further. I know mayo clinic usually get's ranked pretty high, but I really don't care if their topped ranked if they don't provide me with the services I need. Mayo maybe one of the best for digestive health, but how good are they interms of reflux overall? I'm scheduled for a GI dr at mayo, I'm very skeptical of GI doctors. They tend not to worry about my breathing and LPR symptoms, which are my prominent issues. Cleveland Clinic on the other hand may not be overall as high ranking as mayo, but may have a better reflux team.

Ethanol,

I'm actually from wisconsin. I'm thinking of going to see Koufman reflux center because I think she would be one of the most qualified to diagnose and treat my LPR related breathing issues. For me, I have out of network benefits that would cover 70 % with a deductible of 1,000. If my other insurance Cigna is also covered, I wouldn't be to worried. If you can't attend her location, check out cleveland clinic as well. That should be closer than Mayo Clinic Minnesota or Mayo of Florida.

TheSiXness
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   Posted 7/31/2013 7:04 PM (GMT -6)   
Hmm, I wonder why the koufman reflux center has so many openings... Usually when I schedule an appointment it takes months, I can get in within a week if I want.
-TheSixness-

DOGGBONES
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Date Joined Apr 2012
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   Posted 8/1/2013 6:34 AM (GMT -6)   
She'll do a double probe on you to confirm LPR, then tell you to eat her low acid/low fat diet and buy her book.
 
I've heard as well, she'll RX ppi's and or anti-d's.......IMO, she really doesn't offer anything different from a normal GI/ENT.

TheSiXness
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Date Joined May 2012
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   Posted 8/1/2013 5:21 PM (GMT -6)   
Yeah, I think mayo clinic will dig deeper then she would. I'm going to go there first. We'll see how things go... It's really annoying having reflux in the upper airway... Hope the GI Dr i'm going to understands this. I'm seeing Dr Ravi at mayo. I think he just got done with his fellowship or something there. He's only 34.
-TheSixness-

TheSiXness
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Date Joined May 2012
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   Posted 8/1/2013 5:25 PM (GMT -6)   
From mayo's website

Experience. Each year, Mayo Clinic doctors diagnose and treat more than 28,000 adults and children who have gastroesophageal reflux disease. Mayo Clinic specialists are skilled in distinguishing GERD from other disorders that may cause similar symptoms.

Team approach. Specialists in digestive diseases, throat diseases and surgery work together to solve your problem.

Comprehensive options. Virtually every test and treatment for GERD is available in one convenient location. If surgery is needed, Mayo Clinic doctors perform hundreds of anti-reflux surgeries each year.

Children's care. Mayo Clinic pediatric specialists are expert at distinguishing GERD from other illnesses and from normal reflux that occurs in the first year of life.

Efficiency. Diagnosing your problem and recommending a treatment can usually be accomplished in just a few days.
-TheSixness-

georgi303
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Date Joined Apr 2012
Total Posts : 50
   Posted 8/1/2013 6:42 PM (GMT -6)   
Sixness,
I too have considered Mayo clinic. Please let us know what happens. My main symptom is breathing problems also. What are your breathing symptoms, if you don't mind? All my tests show no reflux, but I have LPR symptoms. My breathing problems also get dismissed by the doctors. So frustrating....

TheSiXness
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Date Joined May 2012
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   Posted 8/1/2013 9:43 PM (GMT -6)   
Yeah, pretty much the same thing. I'll breath in and have trouble, my chest and throat get really tight sometimes. I have had 3 pulmonary function tests and all came back normal, no asthma. Umm, I'm right now the borderline for abnormal in terms of my esophagus. I have around 65 refluxes in a 24 hr period. However, 1/3 of those are proximal and are getting up to my sinuses and such... I had a phargneal probe in and I had correlation with a drop in ph with 18 shortness of breath issues....

I have lpr and I'm considered "normal" by Gi doctors... yes, it's very frustrating. I know it's reflux causing my SOB issues, but no doctor I've been to understands that even with my correlation episodes... You can't change a doctors minds overnight. That's why I like finding young ones, they come out of school knowing more then the older ones who have stopped learning over the years. I have an appointment the 26th with Dr Ravi. I'm hoping the team at mayo know what to do with me...

I'm trying to get a list of foods to eat that will superflux my episodes.

I know chocolate cheese cake kicks my butt and chedder cheese. Going to eat a whole bunch of that when I'm doing my ph probe at the end of the month with mayo.

DOGGBONES
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Date Joined Apr 2012
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   Posted 8/2/2013 9:22 AM (GMT -6)   
Sixness,
Good luck at Mayo, I'll be looking forward to hear what they have to say compared to UW.

doneanddone
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Date Joined Aug 2013
Total Posts : 1
   Posted 8/2/2013 12:26 PM (GMT -6)   
Brand new to the thread.  At the first stages of what I believe will be LPR.  If I have to go down that path, I want corrective surgery.  Who at the Mayo Clinic would you recommend?  Thank you

TheSiXness
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Date Joined May 2012
Total Posts : 525
   Posted 8/6/2013 7:11 PM (GMT -6)   
Apparently I have been set up with both an ent and GI doctor for my trip to mayo. Wasn't expecting them to set those up for me... THought it was just a gi visit. Good good. Mayo's looking more competent then others already.

TheSiXness
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Date Joined May 2012
Total Posts : 525
   Posted 8/30/2013 5:09 PM (GMT -6)   
Back from Mayo Clinic, didn't really find the route cause of the problem, but I have been following up with Asthma/Allergies specialties to determine why I continue to have breathing issues. The mayo GI doctors diagnosed me as having functional heartburn/Non-acidic reflux. They didn't tell me if It's reaching my throat or not, but from previous exams I know I have around 35 proximal reflux events in a 24 hour period.

In terms of breathing I found out that I have asthma, not sure what my "triggers" are, but it seems to be anything in the air + temperature. I did the basic 40 allergy skin test and it didn't show any reactions, however, they still want me to follow up with asthma/allergy. I did numerous tests for my breathing, I failed my methacholine was abnormal, my inhalation was abnormal and my flow loop was abnormal. As of right now I'm on qvar, nortriptyline 25, and 40 mg prilosec x2 day. My doctor pointed out that there is something in my upper airway that is causing my inhalation to be bad, could be my vocal cords, he doesn't know. I already knew this was happening, but we'll see where he want's me to go from here.

In terms of reflux, Idk if I can rule out LPR at this point, I know whenever I stop the ppi's my redness returns in my throat and I still have breathing problems + other throat symptoms that are bothering me. During my ph testing, I was having hundreds of laryngospasms an hour. I was eating very acidic foods which I avoid and my throat was just going nuts. I may still end up going to the koufman reflux center in the future because mayo clinic didn't really address the reason why I went there and the reason why I had my TIF surgery... THat being my throat. I don't think the doctors there recognize LPR as a separate condition. Seeing how a lot of people with lpr/ silent reflux don't have heartburn idk why mayo's ent wouldn't look into reflux more. It's kinda like my experience at UW-Madison, the ent doctors really don't look into reflux.

Overall Mayo is top notch. However, when going there for LPR they don't seem to fit my bill. If your having multiple problems and want to get them taken care of in a short amount of time, mayo would be great. Compared to Medical college of Wisconsin and UW-Madison. It would go Mayo, MCW, then UW-M. I was surprised by the GI doctors at MCW, they are very knowledgeable, they are willing to explore a little bit more then madison. Bottom line though, if your problem is just LPR, they won't help you as much as they should.
-TheSickness-

SunnySkyJan
Regular Member


Date Joined Aug 2013
Total Posts : 38
   Posted 8/30/2013 5:45 PM (GMT -6)   
I was going to vote for Mayo as I've been there many times. However, mine have been for brain tumors and they are the best for that. Sorry it didn't work out for you.

Terlin
Regular Member


Date Joined Mar 2013
Total Posts : 91
   Posted 9/1/2013 11:14 AM (GMT -6)   
Six how about u of m how are they ranked and do you get a constant presure pushing up your throat as I do ? And do you get numbness in the head with brain fog ?

TheSiXness
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Date Joined May 2012
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   Posted 9/3/2013 7:41 PM (GMT -6)   
Yes I do get a constant pressure reaching up to my throat. U of M should be decent. Let me know how they pan out. You can always try a different place if you don't like U of M. I know Cleveland clinic isn't to far away from Michigan... Unless your form da U P

Anyways, If anyone else is thinking of seeing Jamie Koufman, She does except insurance, but.... She does charge 950 dollars out of pocket at the end of your appointment... However this can go towards your deductible and if you have a out of pocket limit thats around 1000, everything else should be paid for... Like those expensive ph impedance tests.. yuck.

So it is expensive, but it's not ridiculous. I'd rather go to someone who's going to accurately diagnose me than to waste thousands of dollars playing patty cake.

TheSiXness
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Date Joined May 2012
Total Posts : 525
   Posted 9/20/2013 12:32 PM (GMT -6)   
Hello guys, just an update. I have followed up with my pulmonologist from mayo clinic and my GI doctors. My GI doctors I have been working with believe that there is no way what so ever that my breathing problem is caused by reflux and according to them I don't even have reflux... Pretty typical GI Doctor talk. The pulmonologist said that I do indeed have a breathing problem and it's making it harder to breath in, but he doesn't know what is causing it... He refereed me to an ENT.

In the mean time, I have been to an allergy asthma Dr that is local, I have ruled out allergies from causing my problem. I did two skin tests, blood tests multiple times and nothing... He did breathing tests also and confirmed that I had some kind of refractory asthma. He however was knowledgeable about he reflux and was fairly certain that was the cause, so he recommended surgery.

Also, instead of going through dead ends with the mayo doctors, I just went straight to Dr koufman. He studio appartment was a bit different, I was expecting more of a clinic/hospital, but she didn't disappoint. She was very straight forward and direct with me. She said that my breathing problem was 100 % reflux and that there was no doubt about my lpr. In my ph exam that I did for 18 hours... I refluxed to my throat 23 times, so like 30 ish in 24 hrs. Also, 8 of those were acidic. She explained why I had breathing problems, showed me pictures of the cobblestoning in my nose, described what was going on with my vocal cords.

Apparently, I had a white spot forming near my vocal cords, which was getting close to breaking through the skin. Kinda like the precursor to an ulcer... Also, my vocal cords we're rather large and my left one was pushing over. She put me on zantacs 4 times daily, induction diet, gabapentin, protonix. She also recommended getting the nissen over the TIF. Overall, I'm very happy with going to go see her. She said she was in the same boat I was before she had the nissen herself... She use to wake up in the middle of the night with breathing problems and not be able to sleep for hours, so she understands completely what her patients have been through.

So, I'm going to go ahead and say it. For LPR, koufman is far better than mayo. She has the experience/expertise, she had it herself, and she gives you confidences. To me, mayo didn't seem to much different from local doctors. If your going there for GI issues, they will be great, but not for LPR. At this time I'm gathering my notes about reflux/breathing issues and finding a decent surgeon. We'll see how it goes.

Harriet1983
New Member


Date Joined Dec 2013
Total Posts : 4
   Posted 12/3/2013 10:39 AM (GMT -6)   
I went to see Dr. Koufman yesterday and also was very impressed. My life has been a living nightmare for the past 4 years with choking episodes where I was unable to bring the phlegm up. I also have pressure in my upper abdomen which sometimes feels like it goes into my airways and that is when I cough and choke. I'd been to various doctors (gastroenterologists, otolaryngologists, pulmonologists) but no one was really able to help me. about 3 years ago one doctor gave me Protonix 40mgs. per day but I had severe diarrhea from it and could not tolerate it. I then decided to try some natural treatments (I was already on a vitamin regimen but I added DGL licorice, which is supposed to be good for reflux). I was doing fairly well for about a year but I came down with a cold this past July and I had several severe choking episodes since I couldn't cough up the phlegm and my primary doctor put me on Nexium 20mgs. before breakfast. I also use an albuterol inhaler when necessary. I was able to tolerate the PPI at this lower dose and it seemed to help somewhat but not completely. Dr. Koufman gave me a laryngoscopy and diagnosed me with LPR and left vocal fold paresis. She prescribed rinitidine 4x a day, gabapentin and the induction diet. Sixness--I would like to know how you are progressing under Dr. Koufman's care and if you still like her. I wish you (and everyone on this message board) all the best.

TheSiXness
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Date Joined May 2012
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   Posted 12/4/2013 8:58 AM (GMT -6)   
Hmmm, that's the same thing she diagnosed me with too. Left vocal cord paresis. She put me on low dosage of gabapentin, 4x ranitidine, 2x PPI and diet. I just had to nissen done 2 months ago. I've been feeling quite worse actually. Don't know if I need to up the gabapentin, but my breathing ( the choking feeling ) get's really bad at time and I just sit there at work. I saw her about 3 months ago... She impressed me when I was there and told me I have severe Lpr, left vocal cord paresis and that I was about medium in terms of patients she has seen. Initially she sat me down and said it sounds like post viral vagal neuropathy.

At this point now that I'm not feeling better I really don't know what. I'm outta state for her, so I can see her only every couple of months. Otherwise it gets to expensive to travel. I'm going to up my dose of gabapentin and maybe talk to their office over the phone.

Let me know how your progress goes because it sounds like we have a very similar.

Also, did she give you any words of wisdom that you could share? For me she said it was going to be a long road... 6 months... The plan was to get me off meds by 1 year.

And the purpose of the low dose of gabapentin was to ease the nerves, so they could recover once the reflux is under control. When the nerves finally heal right... my reflux should be gone. That's pretty much what I got out of it. Nerve damage leads to reflux due to getting sick and healing weird...


ahhh one last thing.. I do notice the gabapentin makes my voice a little better and my mucus problem less when I take it. I'm only doing about 200- 300 a day though. I stopped for my surgery because swallowing the pills were hard and I noticed I was basically drinking my salvia at times...

Post Edited (TheSiXness) : 12/4/2013 7:03:53 AM (GMT-7)

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