Hiatal hernia and getting treatment at Mayo Clinic

Hi @elleheart, how frustrating and disappointing to say the least. It sounds like you’ve taken the appropriate steps to seek care at Mayo Clinic. Unfortunately Mayo Clinic has more requests for appointments than available openings.

May I ask to which Mayo Clinic location you applied? Did you self-refer or was it a physician referral?

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

Elleheart, you can self-refer as you did, but sometimes it can be helpful to have your physician submit the referral. It's not a guarantee, but it sounds like your physician feels that Mayo Clinic is uniquely positioned for your surgery and could represent your situation well. Here's a link to the physician referral page https://www.mayoclinic.org/medical-professionals/provider-relations/refer-patient
Colleen

Colleen
I am very grateful for your feedback. Thank-you..Warm regards..

Every department in all medical facilities is different. Having a non-involved no response experience, you may want to take it as a blessing. If it continues, don’t think that one Dr in all of USA can be the answer. It just means you are destined to perhaps go somewhere closer. Maybe your doctor just needs you to find him/her.

A blessing? A 3cm hiatal hernia? Continual discomfort with a myriad of horrible symptoms despite taking all prescribed measures including medication (15 years trying to be a good patient taking all advice given). I need surgery. To suggest it is a blessing that a hospital, such as Mayo, giving no response to a patient who has spend time and money sending all appropriate medical documents is absurd and ludicrous. It seems disingenuous. It feels dismissive. Is this the way people at Mayo in Minnesota deal with a patient’s medical issues? Platitudes? Illness is never a blessing and a lack of response to a patient seeking care is indifference and a lack of professionalism.
A blessing is something miraculous that occurs to someone. A thing conducive to happiness. A hiatal hernia is far from a blessing and it is certainly not happiness. The truth is Mayo refused my case not because I don’t need surgery, as has been indicated by two different gastroenterologist, but because there is criteria (that apparently I did not meet) which has not been communicated to me despite my efforts. While your communication may have been an attempt to make me feel better or as you suggested “blessed” it has confirmed in my mind that I would not at this point ever consider surgery at Mayo.
As a nurse and quite educated I am well aware that there are other qualified physicians and I believe it is my responsibility to find them. I have never experienced in my lifetime a physician looking to find me for treatment.
I do not operate my life on the concept of destiny…hard work, gifts you received both monetarily, genetically, lovingly, along with good health is what shapes a life. Having empathy and a personal vision is also quite helpful. I will seek treatment elsewhere.

I completed the referral process 3 months ago to Penn State Medical Center, Hershey, for a neurologist and just got an appointment date. I can confirm that any referral to a major medical center takes a lot of time and persistence. Kudos to you for hanging in there.
Although the delay and absence of follow-up on Mayo’s part is not at all good practice, I do have some thoughts about the next steps (Cleveland Clinic? Mass General? Hershey?). Paying attention to human nature, I suggest to have your PCP make the referral directly ( that office will make the necessary calls, faxes, etc a lot faster than the surgeon’s office).
Penn State Hershey wanted nothing directly from me. It had to come from the PCP office, the neurosurgeon’s office, and the PT clinic. Maybe they do that to make sure that the “chain of evidence” is pristine and not tampered with by a determined nefarious patient. I too was in the medical field and you and I knew patients who would harass the docs until they got what they wanted. I also think a direct referral phoned or Faxed in from an MD office communicates the importance of the referral to a peer physician. One last thought, if the surgeon’s letter had specifics about what surgery was needed, Mayo probably didn’t like that- the idea a peer is “telling them what to do when they won’t do it themselves”. Plus maybe they would think you were tied to and would insist on that surgery, rather than their recommendations, if different.
A lot of words, but I honor you for being an excellent health advocate for yourself and (I’m sure) for family who need and want your help also. I didn’t realize when I was in the trenches how much you learn about the ins and outs, the human nature involved, the science AND art of medicine.
Wishing you all the best, I have a childhood book with photos of cats dressed in old-fashioned clothing, with a saying on each page- one of my favorites:
“Purrrseverance counts!”.

Oh dear, @elleheart. I can understand your reaction. @happy2bhear, was not speaking on behalf of Mayo Clinic. She and @centre were offering assistance in seeking care should you not be able to get an appointment at Mayo Clinic.

Here in the online forums, words and tone can be easily misunderstood. However, words are the only tool we have. So allow me to say sincerely that no one is suggesting that your condition or needing surgery is a blessing.

Elleheart, I hope your physician will make referrals for you to Mayo Clinic or the institution you and your physician think can help. Fingers crossed that you get answers soon. Let me know if I can help.

I have read online that unvaccinated patients elsewhere are not being considered at all for transplant surgeries. This leads me to wonder if this is true of other types of surgeries as well(?). Does vaccination status play any part in non emergency surgery acceptance?

Dear @centre

At times our own light goes out and is rekindled by a spark from another person.
Each of us has cause to think with deep gratitude of those who have lighted the flame within us…
-A. Schweitzer

Your thoughts and suggestions were very helpful and I believe I was a bit naive regarding this whole process. I plan to to go back to my primary physician and trouble shoot this again.
As Mr. Rogers said “Look for the good people”.
Thank-you for taking the time to give me really good advice and thank-you for being one of the good people…