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Changing GI dr's at Mayo Clinic
I've had GERD for 15 years-and it's been controlled with PPI's. A year ago in November-overnight my world changed and I started getting all kinds of new symptoms I've never had-a lot match LPR symptoms, I've now learned. I was able to get into Mayo at Jacksonville-which is 5 hours away from me. Since March I've been back and forth several times and had a ton of testing done. My GI dr is Dr F in GI and she's an actual well known doctor there, not a PA or NP. I've made a ton of lifestyle and food changes on my own since learning about LPR and believe that's what I'm dealing with. She has only pushed medicine at me and requested testing. She's never asked about diet/food/had me tested for any food things, etc.
She doesn't agree that I'm dealing with LPR and says Mayo doesn't recognize LPR because it's so 'new' and there's not enough research behind it. Even when I've given her info and discussed what I'm going through-she disagrees. I've also had 2 colonoscopies in a short time frame at her request and she wants to another in March because she said it's not thorough enough. However, the dr who did the colonoscopy at Mayo said everything was fine and I did not need a repeat for 5 years. The GI dr told me she wants me to start taking Milk of Magnesia, basically for the rest of my life, even though I'm having bowel movements daily. She thinks I'm still constipated and that's what could be causing issues. She has NEVER once talked to me about food or lifestyle. In fact, when I discussed with her that I was trying Dr. Aviv's acid watcher diet, she laughed and said it wouldn't work. I also hired a private dietician who specializes in GI health on my own and she again laughed and said it was worthless. At my last virtual appt the dietician requested to be at the meeting and she was-but the GI dr was so rude to her and wouldn't acknowledge her at all. She's rude to me as well, condescending, and I feel uncomfortable to bring up anything.
Just yesterday I went on my own to my local ENT about my LPR symptoms and he talked to me for a full hour about everything and was SO supportive! He also acknowledged that LPR was very new in the medical world and he said I'll tell you what I know and be honest about what I don't know. He said I was the most knowledgeable patient he's ever worked with and really supported everything I was doing.
I feel like I'm at a standstill with my GI dr. She's wanting me to have a 3rd colonoscopy that another dr at Mayo said I didn't need (all in a 6 month's time frame), she's not supportive or acknowledging anything I'm doing, I don't agree with taking milk of magnesia daily for the rest of my life, and now she's just pushing me off to Rheumatology because she doesn't have an answer-even though my symptoms are clearly pointing at LPR. I can't go to anyone in my local area-I have gone to the 3 GI dr's in my area before Mayo and they are useless.
My family and my gut tell me to ask for a different GI dr at Mayo. I don't know how that works, or if they even will. Also, she's a dr, not a PA or NP, so I fear getting someone so new that knows nothing. For example, the ENT I've seen at Mayo is a NP and is supposed to be working with an actual dr on my case, but she's not-and her testing and advice has been useless.
Should I request a different dr? How would I go about doing that, if I do?
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What is LPR? Thanks!
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2 ReactionsSounds to me like you have your answer. Stick with the local ENT who has been so supportive. Best of health to you.
Hi @melindanorman, as the patient, you are the CEO of your team and you have several options. You can request to change your specialist at Mayo Clinic. Mayo Clinic wants you to be confident in the care you are receiving.
To submit a request to change provider, it is generally suggested that you contact your current provider or department with the request via the patient portal.
If this is not possible, you can submit your request to the Office of Patient Experience to assist.
Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu
You might also find this article and discussions to be helpful to connect with other members, including @fourof5zs @bpositive @cmdw2600
- Mayo Clinic Q and A: Lifestyle changes may ease laryngopharyngeal reflux https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-lifestyle-changes-may-ease-laryngopharyngeal-reflux/
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- Considering a visit to Mayo for throat symptoms (most likely LPR)
https://connect.mayoclinic.org/discussion/considering-a-visit-to-mayo-for-throat-symptoms-most-likely-lpr/
Other laryngopharyngeal reflux (LPR) discussions: https://connect.mayoclinic.org/search/discussions/?search=LPR
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3 ReactionsMalinda, I know that this sounds like a cliche, but I truly understand what you are going through. I am a retired nurse, and love the science of medicine, and what I know is that this diagnosis they call LPR, for what ever reason is thought to be the bible to ENT docs, and poorly accepted by GI docs. When I was feeling so distraught and miserable with the symptoms, ENT tossed a pamphlet to me on LPR and said, "this is a GI issue, so go back and see GI". Then I waited 3 months to see a GI doc. instead of a PA, and when I asked if he agreed with the LPR thing, He literally SCREAMED at me NO! ! It seems like the answer to every thing with them is to up the dose of the PPI. Proton Pump Inhibitors tell the gut to stop pumping out so much acid. I think the real culprit is the lower esophageal valve that does not close properly, thus reflux of stomach secretions back up. From all I have read, losing weight around the middle, and proper diet restictions and exercise is the only non surgical answer. If it does not work, the only surgical intervention is a fundiplication, or LINX proceedure. And from what I have heard from people on this website, they are difficult proceedures and don,t always work. I personaly do not think I could go through that at my age. But we each have to make our own choices. I will say, shame on medicine for not being more kind and understanding to people suffering with this. God bless you on your journey.
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3 ReactionsI feel for you having a physician scream at you with no willingness to remember the oath he took to help people heal. I feel that i will share a personal experience from a heart specialist (local-not Mayo) my late husband saw for 30 years. I had a case of shortness of breath and other symptoms and went to see him. He was upset with me because I had not lost the weight he prescribed. He got up and was very angry and said, “You don’t listen. You are stubborn and I can’t help you anymore.” Then, he left an slammed the door.
I was very hurt, but I decided to change doctors. I went to Mayo Phoenix and had three marvelous cardiologists. It changed my opinion on doctors.
I suggest you change and avoid further abusive, rude, unprofessional treatment.
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2 ReactionsFYI, I am looking in to that. I also know that one spoiled apple does not ruin the whole basket. I just found out he is retiring. Yay!!!
I started to eat green beans..canned and frozen, this has made all the difference in the world for me. Try it..I eat at least a can a day or frozen. Drink water also. I went through two years of diarreha and bleeding from ulcerative Colitis. I had a colonoscopy, they removed polyps and then the colitis stopped and I started to get constipated, so I added the green beans and my world has changed. Hope this idea helps you to get rid of the milk of magnesia. Sincerely, Kitty2
UPDATE! I'm the one who originally posted about requesting a different doctor at the Mayo GI dept in Jacksonville because of how I was treated. I sent in a letter to the patient experience office and they responded with a general letter saying everything had been handled correctly and my case was dismissed. I wrote them a 2nd letter and actually requested a change in dr's (I never asked for it my first letter) and a director at Mayo called me and said they were dropping me as a patient and there was nothing more they could do for me (even though I was in the middle of testing and had 6 appointments scheduled). I begged, cried, asked why and was not given an answer. This whole experience at Mayo has been devastating with no answers and being treated so poorly, even though I went above and beyond as a patient to change my lifestyle, food, habits, to try to improve things (even though that was never discussed with me). Everyone who hears my story believes the dr felt challenged by me. Not at all trying to do any of that. I'm a researcher and this is MY life-that I'm struggling with. Just trying to get relief, help, and answers. So now I have to start all over again and try to find somewhere else to go.
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1 ReactionI am SO sorry this happened to you! I wouldn’t think that it would be a problem to see a different provider if you felt uncomfortable. It’s a long story, but I’ve also had an extremely negative experience with the clinic coordinating my care at Jacksonville.
I was treated very poorly by a PT who specialized in my condition, and I asked if I could have a “do over” with a different PT—I said I didn’t feel comfortable, and it wasn’t the right fit, and they arranged it for me. I went directly to the clinic where I am a patient though, and not Office of Patient Experience (OPX).
Anyway, I wish I had more to offer you, but all I can say is: I can relate. I also saw a GI doctor at Jacksonville, and he was straight-up rude and condescending to me, but I took it no further than the survey because I have referrals (with long waits) at home to see specialists and despite his condescension, some of the info may be actionable for me.
Similar to you, I brought a case to Patient Experience because someone accidentally cancelled my Neurology appointment without informing me and after months it wasn’t resolved. After their “investigation,” they concluded they were right to cancel it because on further review of my medical record they can’t verify I have the diagnosis I have because I provided a test report from my local medical center (a top 10 medical center for neurology) “lacked numerical values.” I was livid!
Why would I provide a test report lacking numerical values and if they had a faulty one, why didn’t they ask me?
But their decisions can’t be appealed. And same as you, all my appointments were canceled and I have to find somewhere new to go.
I’m still really hurt and it hurts all the more when I see Mayo commercials and hear of people practically waxing poetic about how amazing their experience at Mayo is, when that hasn’t been my experience at all. I’ve had NUMEROUS issues come up, but this was by far the worst offense, and no one there seems to care.
I’m still deeply sad, but it’s been a few weeks since The Letter, but I decided I’m better off going somewhere where I’m treated better (at least in the case of Neurology) and the providers want to work with me instead of looking for a reason not to.
It’s horrible that you have to start all over, and I see you mentioned you’re a researcher, and I dunno maybe they found us annoying because we’re willing to advocate for ourselves and ask questions. But I’m really hoping you are able to find a new place to start over and that it’ll be better for you. I considered Cleveland Clinic and I got an appointment at Johns Hopkins. Travel is a barrier, and my reluctance to start over kept me hanging on at Mayo, but if I’m honest the team at Jacksonville has not treated me well enough to merit me staying.
I just wanted you to know you’re not alone. It happened to me too. And I am truly wishing you all the best.
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1 ReactionI was wondering if anyone has ever been helped by an actual health advocate? I was a patient at Mayo in Jacksonville for about 1.5 years and wasn't getting answers, wasn't agreeing with my treatment plan, and had a very self-righteous dr. I asked the office of patient experiences for a dr change and they dropped me as a patient. The crazy thing was I still had several appointments set up for further testing. I live in a small town with horrible health care. I've since traveled to NYC and south Florida to see 'experts' as well as trying to see local doctors. I've been denied care several times because I was told "If Mayo can't help you, how can we?" I think it's ridiculous that I'm being denied care without even being seen once. My health issues haven't changed and no once knows how to help me. I'm doing a search on other teaching hospitals to see if I should try to travel and visit one (including Mayo in Minnesota). I also don't know if I tried to go back to Mayo in Jacksonville if they would see me and place me with a different GI dr. (It's been almost a year now since they dropped me as a patient). I don't trust them though because Office of Patient Experience makes you think you can be open and honest and they'd respect you as a patient, but basically they just tattled and lied about the dr. I have proof of things said because we did a lot of video chats, but they don't care. I just want to be seen by a respectable doctor who is willing to try things and treat me. Any help?
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