Please don't go to the Mayo Clinic ER!

Posted by wings89 @wings89, Nov 24, 2020

This is the worst ER we have ever been too. They are the worst all around. We rushed my young daughter here because she yawned and her jaw became completely dislocated on both sides and went up and over bones and got wedged. We just happened to be becoming up to Mayo and getting her heart and stomach looked at again. When we went to check in the 2 clerks asked us "What the heck are you doing here this isn't an Emergency. Your gonna see Mayo doctors tomorrow just come back then." I said "We are seeing a gastroenterologist and cardiologist tomorrow how are they going to help" They were so mad they said, "Fine, but there is nothing we are going to do for her your wasting your time and ours!" We got into ER and a doctor came in and said we cant help your daughter come back tomorrow. No nurse came in to take vitals or find out what happened. The doctor didnt even look at her or examine her. My daughter started crying and I said you can't leave her like this!!! She got mad and said fine Ill call the maxillofacial surgeon. She came back and said I called him and l left a message. His office will call you in the next 2 or 3 days. It was Sunday morning. I said there has to be someone to help her. She said just go and wait for your phone call and left! We were so mad!!!! My daughter is crying. She cant even move her mouth at all. Her face was really swollen Monday morning at 8am came and I kept asking the doctors at Mayo and the staff if they could help find us a doctor to see about her stuck jaw. At 6 pm a friendly orthodontist stop to help us. He called around for 2 hours and finally got ahold of a maxillofacial surgeon. He would see her Tuesday afternoon. When we talked to him. He said he was on call the whole day Sunday and nobody contacted him otherwise he would have been in the ER and corrected it then. Found out she called and left a message at his Mayo Clinic office which was closed and not the on call doctor like she is suppose to. He got so upset. We fought with insurance for the rest of the week and finally had the surgery on Friday afternoon. The insurance said they would pay for it and a month later we got stuck with a bill for over $16,000. If the stupid doctor in ER had done her job and called the on call doctor like she always does then we wouldn't have this bill because it was indeed an EMERGENCY!!!! I feel she was getting paid by the insurance company to do this. My young daughter found out she has hEDS and that's what caused this. All her joints are seriously dislocating and her heart is hurting more. Her left condyle is going flat and she is having ear pain, ear hurting, jaw hurting, popping, cracking and shifting out of place. We cant do anything to help her because they dont care about a little girl in severe pain!!!!!!!!!!!! I hate this ER and tell everyone never to go here. I wouldn't go here if I was dying. A part of me died when they treated my daughter like total crap No care in the world. They weren't even busy that day. How dare they treat people like this I hope some day when they are at their worst and wishing for someone to help they remember my little daughter crying for someone to help her. She lived off baby food and protein shakes for 2 weeks She is big time suffering. Do they even understand!!!!!! My daughter is only getting worse. She asked for a wheelchair and her hearing is going out. Mayo gave up on her.

@wings89, I simply cannot imagine what you, your daughter and your family went through and are continuing to deal with.

I strongly encourage you to contact the Office of Patient Experience by email or phone and tell them about your experience. Here's the contact information https://www.mayoclinic.org/about-mayo-clinic/patient-experience They will want to know about this and to rectify what can be rectified. And makes sure this doesn't happen to others (at the very least).

Now that your daughter has the diagnosis of Hypermobile type Ehlers-Danlos syndrome (hEDS), what are the next steps? Is she getting guidance and treatment?

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@wings89 no words to convey my sympathy for your dreadful experience. I hope your sharing of this encounter creates a “teachable” moment for the ER staff. We are here for you if you need to talk/write.

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@colleenyoung

@wings89, I simply cannot imagine what you, your daughter and your family went through and are continuing to deal with.

I strongly encourage you to contact the Office of Patient Experience by email or phone and tell them about your experience. Here's the contact information https://www.mayoclinic.org/about-mayo-clinic/patient-experience They will want to know about this and to rectify what can be rectified. And makes sure this doesn't happen to others (at the very least).

Now that your daughter has the diagnosis of Hypermobile type Ehlers-Danlos syndrome (hEDS), what are the next steps? Is she getting guidance and treatment?

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We are taking her to Lurie's children's hospital now. She is suppose to have more testing done but COVID is interfering. She keeps falling because her knee keeps giving out and when she stands back up she has to pop her kneecap back in. She is tired all the time because she is in pain. We got her a puppy and it helps. She is training it to eventually be her service dog.

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@wings89 What a dreadful way to be treated! I don't know where you reside but the University of Michigan Children's Hospital comes highly recommended.

Liked by wings89

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Ill keep that in mind. Thank you.

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@wings89, I think you might like to connect with @lovemyfamily2003, whose teenage daughter also has hypermobile type Ehlers-Danlos syndrome (hEDS). See this discussion:
– Ehlers Danlos Syndrome – New Diagnosis https://connect.mayoclinic.org/discussion/ehlers-danlos-syndrome-new-diagnosis-1/

You may also be interested in these discussions where members like @jimhd @gailfaith @cwm1 and others talk about training dogs to be their service animal and even to go into service in medical centers, like Caring Canines.
– What Pets Can Do: Health and Healing https://connect.mayoclinic.org/discussion/what-pets-can-do-health-and-healing/
– The value of an animal https://connect.mayoclinic.org/discussion/the-value-of-an-animal/
– Training my Dog to be a Service Dog – Post Transplant https://connect.mayoclinic.org/discussion/service-dog-post-transplant/

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