Where do you go after Mayo Clinic has denied your case?

Posted by brandonl @brandonl, Oct 25, 2021

Where can I find world leading surgeons and diagnosticians for abdominal and GI injuries that are hard to diagnose? Unfortunate Mayo Clinic has denied my case due to the complexity of it. I'm in desperate need of help finding specialists. Any recommendations would be greatly appreciated.

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There are other NET/NEC specialists. Try Dr. Eric Liu in Denver CO. Or Sloan Kettering. Dr. Ramierez at Vanderbilt in Nashville TN

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I just replied to your post from July 5th with a doctor suggestion.

Have you had any success anywhere?

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Great docs at Cleveland Clinic and John Hopkins, also try different medical universities.

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I agree with @gastrogirl . I would also say don’t give up on Mayo . Did you try Mayo Clinic Jacksonville or main ? I was on waitlist for 8 weeks and finally got televisit 4 months after referral sent . I went up for days of testing but with same results and diagnoses. So that was 5 th Gastro Dr in 8 years and my last hope . I suffer so so so badly with horrendous digestive disorders. I’m pretty much a medical mystery by now . It ruins every day and night of my life .
It’s chronic and I’ve tried everything they make holistically, diet wise , enzymes, RX , diff massage therapy, hypnotherapy but now I’m back to just taking Ultra Pepto 2 x day as I have for years on end . I deep wet belch over 4000 x a day/night . I have chronic Gastritis, small hiatal hernia, Esophagitis, Class B GERD, diverticulosis. The Extreme gas and belching is the hardest with the constant churning gut . What are your symptoms? I’ll pray 🙏 that you get to the right Dr. I had to try Mayo as my last resort . I just turned 60 and I don’t really want to live the rest of my life this way .

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@rozy288 I'm sooo sorry for all you're going through. In reading your history on Connect, I'm not in any position to give advice. But it did occur to me that focusing on something other than your symptoms may prove more successful. With all the belching you have day/night, your sleep quality must be suffering. A suggestion might be, start with your sleep issues. Meditation ritual before bed, mild sleep agent (per doc's ok,) warm bath, chamomile tea, read. This all sounds lightweight, but as a ritual, not rushed, to be enjoyed, pampering yourself all the way, you may eventually find your body letting you get better sleep. Sleep is so important. I hope you find your way to a solution, Rozy.
Bless you, Suzanne.

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@suzbyrne

@rozy288 I'm sooo sorry for all you're going through. In reading your history on Connect, I'm not in any position to give advice. But it did occur to me that focusing on something other than your symptoms may prove more successful. With all the belching you have day/night, your sleep quality must be suffering. A suggestion might be, start with your sleep issues. Meditation ritual before bed, mild sleep agent (per doc's ok,) warm bath, chamomile tea, read. This all sounds lightweight, but as a ritual, not rushed, to be enjoyed, pampering yourself all the way, you may eventually find your body letting you get better sleep. Sleep is so important. I hope you find your way to a solution, Rozy.
Bless you, Suzanne.

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@suzbyrne I have a sleep ritual , I go to bed around 8 pm and fall asleep by 9:30 pm . I take melatonin gummy or 5mg Ambien . Unfortunately it only keeps me asleep about 3-4 hours and then I’m awake and asleep on and off rest of night til I wake for day at 6 am .
I suffer w/ symptoms during those night time wake times very badly .
Sometimes my own gut and intestines noises actually wake me up .
I eat clean and healthy home cooked meals w/ my husband. We rarely eat out . No caffeine in my life , low sugar , low fat , no fast food . No soda or pop or carbonated drinks .
I have small flat polyps on stomach lining they aren’t too concerned with . Had every test and re test done .
Same diagnoses they can’t really do much about .
Yes I am tired 😴 but do my best to stay in my routine.
I can’t even invite friends to stay and don’t visit my kids much 2 hrs away because I’m sick daily .
I get up and take care of my house and dogs and shower , dress , do my hair and makeup… but then I’m exhausted.
So Thanks for the well intended advice . I do appreciate it .
Rosemary

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@rozy288

I agree with @gastrogirl . I would also say don’t give up on Mayo . Did you try Mayo Clinic Jacksonville or main ? I was on waitlist for 8 weeks and finally got televisit 4 months after referral sent . I went up for days of testing but with same results and diagnoses. So that was 5 th Gastro Dr in 8 years and my last hope . I suffer so so so badly with horrendous digestive disorders. I’m pretty much a medical mystery by now . It ruins every day and night of my life .
It’s chronic and I’ve tried everything they make holistically, diet wise , enzymes, RX , diff massage therapy, hypnotherapy but now I’m back to just taking Ultra Pepto 2 x day as I have for years on end . I deep wet belch over 4000 x a day/night . I have chronic Gastritis, small hiatal hernia, Esophagitis, Class B GERD, diverticulosis. The Extreme gas and belching is the hardest with the constant churning gut . What are your symptoms? I’ll pray 🙏 that you get to the right Dr. I had to try Mayo as my last resort . I just turned 60 and I don’t really want to live the rest of my life this way .

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Have you looked into LINX? Check out Dr. Lipham at USC. I HAD A HIATAL HERNIA AND REFLUX 84 times a day. Had surgery in 2018 and have had no problems since. On no meds.

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@drrobertsmsmft

Have you looked into LINX? Check out Dr. Lipham at USC. I HAD A HIATAL HERNIA AND REFLUX 84 times a day. Had surgery in 2018 and have had no problems since. On no meds.

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No Linx for me , I need to get all that churning gas and 1000’s of deep belches out of me . LINX and other similar surgeries do not allow you to belch or god forbid throw up after you get it I read many times @drrobertsmsmft . Glad it worked for you 😉

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