Hiatal hernia and getting treatment at Mayo Clinic

Posted by elleheart @elleheart, Feb 16, 2022

Having struggled with a hiatal hernia for many years and now facing serious issues with it I went to see a surgeon at John’s Hopkins who seriously recommended surgery as my hernia is large. After much research I thought the Mayo Clinic would be the best place to have surgery and an experience practitioner would be best to do the job. Mayo seemed like the best choice as the surgery is no joke. I sent in all my records but found that the hospital was lax in getting back to me. As a nurse myself, for many years, I found this extremely disappointing. I essentially did all the calling to find out the status of my case and was told by one department that I couldn’t be seen there but could surely be seen in the esophageal clinic who could determine the next step in my case. Well no one in the esophageal clinic got back to me so I took it upon myself to call and find out about my case. The woman I spoke to stated my case had been refused and that I should seek treatment locally!! No cogent explanation for why my case was refused. I have excellent health insurance and I have tried all recommendations over the years to reduce the suffering I have experienced with this hernia. Nothing has helped except not eating. Not really a good approach to a health condition. At this point I am convinced that being seen at Mayo is like applying to an elite college. I also suspect having some kind of connection would help open the door for me. I am beyond disappointed as no one would opt to have this surgery if they did not need it. I am not impressed with the experience I had with Mayo it was unprofessional and left me with the feeling that you need “Ruby Shoes” to be seen there.

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

@happy2bhear

What test are they doing? Wasn’t the test outlawed in Dec for giving more positive than negative?

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I don't know which test they do. I assume that the Mayo knows what they do. One cannot outlaw any tests, one can just advise about them. If I want to have surgery at the Mayo, I have to follow their pre-surgical protocol, and Covid testing is part of it.

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@lindes

I don't know which test they do. I assume that the Mayo knows what they do. One cannot outlaw any tests, one can just advise about them. If I want to have surgery at the Mayo, I have to follow their pre-surgical protocol, and Covid testing is part of it.

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Thanks I was curious. I’ve been choosing strange words these days. Maybe I can blame it on some medication changes instead of reality that my mind is slowly going. Good luck with all they’ll do. As for cold feet, how’s that doing? I’m new to Wisconsin, but my feet have been cold in Miami to Iceland. 😊

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@lindes

I don't know which test they do. I assume that the Mayo knows what they do. One cannot outlaw any tests, one can just advise about them. If I want to have surgery at the Mayo, I have to follow their pre-surgical protocol, and Covid testing is part of it.

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@lindes and @happy2bhere With my recent Covid test at Mayo~Rochester, it was the swab inserted into the nose to the back of the throat. The nurse who administered the test was so gentle and explained that the long swab gives the bigger picture of where the virus might be. There are cases of people who don't have a positive test with just a nasal sample, but are positive when they test the back of their throat.
While I dreaded the thought of it, in reality, the test was so smooth and absolutely painless lasting mere seconds.
@lindes I see your surgery is coming up Feb 24th. But I missed which Mayo Campus you’ll be attending. Is this Rochester (my home away from home) or Jacksonville?

@happy2bhear welcome to Wisconsin. It’s my home state. I love 30-ish miles southwest of Green Bay. Where are you?

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@elleheart

Agreed. Covid has changed the fabric of everything. Have been able to see Doctors fairly regularly out here on the East coast but I guess it depends where you are seeking treatment. Best wishes and safe keeping to all those waiting for care…

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@elleheart, if you wish to connect with others with hiatal hernia, I invite you to follow the Digestive Health group: https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/

Here are a couple of relevant discussions you may wish to join:
- Have hiatal hernia and can't take medications: Suggestions? https://connect.mayoclinic.org/discussion/hernia-hiatal/
- Hiatal Hernia. What helps? https://connect.mayoclinic.org/discussion/hiatal-hernia-what-helps-surgery-or-no/

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@loribmt

@lindes and @happy2bhere With my recent Covid test at Mayo~Rochester, it was the swab inserted into the nose to the back of the throat. The nurse who administered the test was so gentle and explained that the long swab gives the bigger picture of where the virus might be. There are cases of people who don't have a positive test with just a nasal sample, but are positive when they test the back of their throat.
While I dreaded the thought of it, in reality, the test was so smooth and absolutely painless lasting mere seconds.
@lindes I see your surgery is coming up Feb 24th. But I missed which Mayo Campus you’ll be attending. Is this Rochester (my home away from home) or Jacksonville?

@happy2bhear welcome to Wisconsin. It’s my home state. I love 30-ish miles southwest of Green Bay. Where are you?

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Lori, I will go to Jacksonville, because I live in Florida (moved there from Wisconsin). I have some female stuff to be done, and Florida is good for working with older women.

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@happy2bhear

Thanks I was curious. I’ve been choosing strange words these days. Maybe I can blame it on some medication changes instead of reality that my mind is slowly going. Good luck with all they’ll do. As for cold feet, how’s that doing? I’m new to Wisconsin, but my feet have been cold in Miami to Iceland. 😊

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Wisconsin will teach you how to walk with ice lumps at the end of your legs! My feet like the temperatures in Fort Myers a lot better!

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@lindes

This is correct! I will have surgery at the Mayo on Feb 24, and nobody asked me for my vaccination status. I have to pass a Covid test a day prior to surgery, and if this turns out negative, I will have surgery.

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@lindes they do not ask your vaccination status because it may have been recorded and shared online…. I think my pharmacy called it GRIT system or something like that.. could be I remember name wrong. I can view it through my Mayo patient portal. If you got your vaccinations and test at a doctor's office they may or may not share. All my covid test are not listed… only the one at the Mayo, but my Covid vaccines are listed.

ZeeGee

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@fourof5zs

@lindes they do not ask your vaccination status because it may have been recorded and shared online…. I think my pharmacy called it GRIT system or something like that.. could be I remember name wrong. I can view it through my Mayo patient portal. If you got your vaccinations and test at a doctor's office they may or may not share. All my covid test are not listed… only the one at the Mayo, but my Covid vaccines are listed.

ZeeGee

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You are correct, I just checked, both vaccinations and the booster are in my records

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@elleheart

Hi Ms. Young and thank-you for reaching out to me. I applied to the Mayo Clinic in Rochester Minnesota and was quite willing to do whatever it takes to get my serious hiatal hernia fixed even if it meant living in Minnesota for the allotted time period. Initially I self referred not aware that a Dr. referral was needed. So I called Dr. Gutierrez-Brewer at John’s Hopkins who had done my endoscopy in March of last year. She told me I needed surgery but that the way my Hernia presented she did not feel she could fix it. I contacted her recently and she send me a referral which I sent to the Mayo clinic. The Dr. specified that the surgery should be done in a specified manner. Possibly robotically. I am so disappointed and actually scared as I know I need this surgery and I am aware of the risks my long term GERD and hernia has had on my health. I also realize this surgery is not to be taken lightly and I have perseverated on whether having the surgery is worth the risk. Having finally decided to go through with surgery with Dr. Gutirrez-Brewer’s recommendation as well as the Dr. I have seen here in Pa. I was taken a back by Mayo’s refusal to treat me. I am not a high maintenance person and I don’t make decisions lightly so this has been a major set back for me in terms of remaining healthy. I do not want to have surgery unless it is with a highly skilled physician, as mentioned before, the surgery is not to be taken lightly. If you can advise me as to how I can be seen at Mayo I would greatly appreciate it. Would It help to have the Surgeon from Johns Hopkins make another referral as hers may have gotten there a little late? I would even agree to be put on a waiting list if at all possible. Please advise if it is in your capacity to do so. Thank-you. Elleheart

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I live in DC and was referred to Dr. Bower and I was wondering if you ever had you surgery. I just had an endoscopy and it seems my hernia as gotten larger and I may need to surgery and I was curious if you had surgery and what your outcome was.

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@cindys33316

I live in DC and was referred to Dr. Bower and I was wondering if you ever had you surgery. I just had an endoscopy and it seems my hernia as gotten larger and I may need to surgery and I was curious if you had surgery and what your outcome was.

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Hi Cindy,

I understand your concerns as I was really suffering with my hernia. After much research, many endoscopies, discussions with my gastroenterologist along with talking to two people who had the surgery I decided not to have the surgery. The people who had the surgery had some complications and still needed medication. My gastroenterologist confirmed this as well. So I set out to find a way to reduce my symptoms:
1-No drinking fluids after 6pm/food as well-Can have small sips of tea or water
2.-Purchased a bed with a mattress that elevates so I am in a slightly semi Fowler position. You eventually get use to sleeping with the elevation
3.-Lost 10 lbs.
4.-Most important I discovered through research that gaviscon extra strength helped my gerd 100 percent. 2 tabs before bedtime with a glass of water and my symptoms improved greatly. Since gaviscon has an aluminum component I explored ordering Canadian gaviscon which does not have aluminum. I received it and it works very well with few to no side effects except a dry mouth in the a.m.
I was so relieved not to have to take Prilosec which gave me horrible side effects. I wished I was given this medication from the get go but no one ever prescribed it or discussed it. While I realize some people need the surgery I have been able to keep my symptoms at bay with the Gaviscon. I am careful not to overdue what I eat but honestly my diet is not that restrictive. I am hoping I can continue in this pattern as my gerd has improved drastically. I am glad I set about exploring options other then surgery or continuing on omeprazole. I am hoping I can keep this regimen without the need for medicine/surgery other then the Canadian Gaviscon. Intermittent fasting is also helpful. There are many ways to go about this but I usually have coffee in the am and don’t eat until 12:30 and stop all food intake after 6pm. Good-luck to you….Ellen

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