Frustrated Scheduling with the EDS Clinic

Posted by emo @emo, Jun 4 11:47am

I’m feeling really frustrated organizing my appointments with the EDS Clinic in Jacksonville, and I’m wondering if anyone else has had struggles or has recommendations? Where have you found treatment for EDS?

I established care and was seen in person over a year ago after waiting nearly a year to have the appointment, and I’ve run into all kinds of misinformation, lack of follow up and barrier after barrier. I’ve been in contact with the Office of Patient Experience multiple times, because some of the issues have risen to that level of concern, and it doesn’t seem to make a difference because they must defer to what department “leadership” communicates back to them. Also noteworthy: I went in person to the Office of Patient Experience to share my challenges/feedback, and I could hear clearly the family in the next room, also commenting about their negative EDS Clinic experience.

Although I haven't gotten the answers and treatment I hoped for, I can say that almost everyone (once I get to through to someone) has been kind. I don't think it's entirely their fault, and I understand the challenge--but you have to be honest with patients, at least, and give accurate information. Follow up when you say you will. My take is this is a small and growing clinic that needs more support from Mayo to meet the high volume of patients with high need.

I wish I would have known it would be like this before I started this journey, so I wanted to share my experience, from a place of frustration and disappointment, but also in case it makes a difference to someone somewhere so they can make an informed decision about where to seek care. Or maybe as the EDS Clinic grows, feedback will be helpful. I’m so confused because others rave about how they had such a positive experience (but in other EDS groups, the sentiment isn’t nearly as positive) and this summary isn't even everything I experienced.

I called scheduling again today in an attempt to schedule my “final follow-up” with my provider, and again there are no times available. I understand this, but the greater issue is I called 3 weeks ago and the representative told me they would “request access” to schedule me and call back with an update, and no one ever called me. This has happened every month since November 2023. If nothing was available, I would need to call back on the 10th of the month when the schedule for 3 months from now opens. I've done so each month on a variety of days and either the phone rings (I wait for at least 10 rings before hanging up), or all the appointments are booked.

Sometimes people offer to call me; they never call back. One time the representative told me he would write my name on a Post-it and stick it to his computer to remind him to schedule an appointment for me when the next schedule opened—that was months ago. He said that’s the system they have; there is no system set up to manage established patients with orders on file for follow-ups or other appointments. Unlike other departments, it's primarily self-scheduling--it falls on the patient to call to schedule.

I wish I could say this was the only barrier I’ve hit, but it’s not:

-I was initially told numerous times when I established care: “The good thing is, if these consultations can’t happen in-person, they can all be done by telehealth.” It's part of why I chose this clinic. Even the specific provider I met with told me this to my face. That was false and after traveling across the country, all my other appointments except the in-person therapy consultations I’d already completed were cancelled.

It took over a month (and a grievance with Patient Experience) for someone to follow up to explain what happened or what to do next.

-I requested a female PT because I’m a trauma survivor; they don’t have one on the EDS team. The PTs I met with were stuck on my central sensitization diagnosis, even though I told them I’ve been receiving treatment for it for years at the #1 rehabilitation hospital in the world (yes, higher ranked even than Mayo, but without EDS-trained PTs) and specifically needed help with hypermobility and POTS. Still, they insisted I wasn’t pushing myself hard enough, which is why I wasn’t getting better.

I also had a pelvic PT consultation and I cannot say I believe they had training in trauma-informed care, which was a shock at such a renowned medical center.

-The EDS Clinic then scheduled me with the wrong gynecologist (she does not treat my condition), which resulted in me having to start over with a new GYN.

-I have a confirmed diagnosis of POTS and so my referring local provider asked if I could see an autonomic neurologist. I was instead directed to the “2-day POTS Program,” only offered in person (when I was told it was available online), which requires an in-person evaluation with a psychologist. Two weeks before traveling there, I learned that was false—the psychologist could have done the consult virtually, which would have shaved days off my travel and hotel stay.

Days before the program, I was notified the program was cut to one day, instead of two.

-Then, the last straw: I was scheduled in Autonomic Neurology because of my confirmed POTS diagnosis, and they only allow in-person appointments. I made travel plans, and they cancelled my appointment without notifying me, and with no explanation. It just disappeared from my portal. Several inquiries and another grievance later, “the leadership” informed me they couldn’t validate my POTS diagnosis and would not be rescheduling the appointment. They said my test report "lacks numerical values," which makes no sense.

-I gave up after that and decided to complete the orders I could and schedule my final follow-up. I traveled back to Jacksonville last month for other appointments and hoped to do my EDS Clinic follow-up in person, thinking that way we could alleviate the miscommunication—I was told EDS Clinic follow-ups are only done virtually, no exceptions!

I’m still waiting. I called again today; the person I spoke to said he’ll see if there are other openings. I'll give him a chance, but this is now the 8th month of this happening.

Any tips? Or what’s been your experience seeking treatment for EDS? Have you gone elsewhere for care?

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

Hi @emo, you certainly have been on a journey of circular conversations, broken communication, and no doubt frustrations. Thanks for taking the time to outline the full story and timeline here. You and I have communicated in various discussions since you first joined a year ago, and I have tried to lend a hand to help things along.

As a trauma survivor, I want to acknowledge that you deserve trauma informed care. I regret that you find yourself suffering from betrayal trama because you feel unheard and that things are spinning in place. How might this change?

I don't think I'm telling you anything new in the remainder of my reply, but I also want to provide information to help others who are seeking care or are in care at the EDS Clinic at Mayo Clinic.

The EDS Clinic at Mayo is a "consultative clinic." This means success for ongoing care for EDS after consultation with Mayo Clinic's EDS clinic relies on established care with a local PCP for long-term follow-up and follow-through on the treatment plan. The EDS care team provides diagnostic evaluations and treatment recommendations to be carried on with primary care providers.

Ehlers-Danlos syndrome care at Mayo Clinic (
· Ehlers-Danlos syndrome affects many different body systems, so your team will include different specialists involved in your care. At Mayo Clinic, your team may include specialists in medical genetics and physical medicine and rehabilitation — as well as vascular, cardiovascular, neurological, orthopedic and pediatric surgeons, if necessary.
· There are many different types of Ehlers-Danlos syndrome and the symptoms can overlap. Mayo Clinic physicians have extensive expertise in the condition, so they can quickly determine a precise diagnosis and treatment plan.
· Long-term management. The goal at Mayo Clinic is to propose a long-term management plan that can be followed by your local primary care physician.

Here is a link to the healthcare directory kept up-to-date by the EDS Society listing local providers.
- EDS Healthcare Professionals Directory

How things work is explained in the 2 documents attached: Frequently Asked Questions and Your Next Steps: EDS Clinic

With respect to virtual appointments, I know that you were caught in the transition of federal and state executive orders (not Mayo Clinic specific) regarding exceptions that were made during the pandemic. In order to have out-of-state medical care, the provider must be licensed in the state where you live. Again, this is a regulation nation wide and not Mayo Clinic specific. Thus, like you, I am confused that you were told that EDS clinic only does virtual appointments. I would ask for clarification.

I see that poor communication or mixed messages has also occurred with autonomic neurology and gynecology. You probably won't like what I'm going to suggest, but have you talked to the Office of Patient Experience about these examples too? There seems to be a common and repeating theme here.

My tips would be to reach out to nurse Jessica Gehin via the patient portal (although I suspect you have) or call the clinic directly 904-956-8887.

Shared files

Frequently Asked Questions Ehlers-Danlos Syndrome (EDS) Clinic (Frequently-Asked-Questions-Ehlers-Danlos-Syndrome-EDS-Clinic.pdf)

Your Next Steps EDS_ Ehlers-Danlos Syndrome Clinic (Your-Next-Steps-EDS_-Ehlers-Danlos-Syndrome-Clinic.pdf)

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