Perioperative Pearls for EDS and HSD Patients: What to Know Before Surgery

I know this is unrelated to the above post, but I'm curious if there has been any news about what will happen to the EDS Clinic at Mayo Jacksonville when/now that Dr. Knight leaves his position, and the patients established with and waiting to be seen? I've been very transparent about not having the most positive experience, mostly because of organizational challenges, but they were always kind to me when we were able to overcome the communication and administrative challenges. And as a patient, we were always told we could contact the clinic to return if and when we experienced a significant life change that affected our condition. I'm disappointed Mayo didn't or couldn't invest more in EDS and POTS care.

@emo, Mayo Clinic continues to support EDS and POTs care and invests in EDS research. As always, you can reach the Ehlers-Danlos Syndrome care team through your patient account on the the Mayo Clinic Patient Portal or by phone at 904-953-0869.

For any other questions regarding appointment, you can contact Mayo Clinic's central contact offices by location https://mayocl.in/1mtmR63

@emo I too am very interested in the future of EDS care at the Jacksonville Mayo Clinic as I have been fighting with Tricare for a referral to get a proper diagnosis there. Is it even worth pursuing?

@marti0808 To be honest, I didn't follow up, although I appreciate Colleen's reply. You can certainly call the EDS Clinic at Jacksonville and try to ask what they've done with the wait list (there was a wait list when I scheduled), if there even is a wait list, and what providers are available. At the time I was being seen there, Dr. Knight was there and they had just taken on a new provider who was a PA. I believe she's still there, as I've seen her listed on programs for presentations saying she still works at Mayo.

Based on my experience, I wouldn't recommend their EDS Clinic, unless they've made changes to how they operate (but they may have). My experience was very poorly organized with little to no follow-up or assistance, even for scheduling appointments that were ordered by Dr. Knight. I would call and call and call, and no one would pick up, or nothing would be available, for months. There was no effort made to coordinate appointments together for me as an out-of-town patient, as was done for me at Rochester. I had to schedule everything myself.

My appointment was rushed and incomplete. I had consultations with both PTs, and they were using outdated and overly aggressive approaches (which is what I was told by two other authorities on POTS and EDS). I did get introduced to a specialist whom I still follow with for a different condition--because she actually allows me to follow up with her, unlike the EDS Clinic. But the Mayo model at their EDS Clinic is to do basically an evaluation/assessment, make general recommendations, and then send you out into the world on your own. If you're out of state, keep in mind you'll need to return if you want to follow through with many of the orders for services or testing--and you'll have to coordinate that all on your own (at least that's what I had to do).

The reason I said I was disappointed that Mayo isn't investing in POTS and EDS is because I had an internal referral to the one and only POTS provider at Jacksonville, from Dr. Knight himself, and the provider refused to see me, despite having a confirmed diagnosis of POTS. There's only one provider, and a two-day POTS program you can attend. I traveled all the way there for it, and the program was cut last minute down to one day.

Also all articles I've seen about Dr. Knight's departure reference a 3 million dollar donation to go toward UVA's new center, multiple providers including for adults and children, physical therapists, and psychologists--specifically for the EDS Clinic only. Presumably unlike the PTs I saw at Mayo, they're not seeing all other manner of patients, making booking even more limited for such an in-need population. Those are all things Mayo doesn't offer. According to this article, they also will CONTINUE to coordinate care for some patients--which Mayo also won't do. If I compare my experience at Mayo with what's described in the article, I'm reading it as: "All the things you thought you'd get at Mayo, they're now planning to do at UVA!" But that's probably partially my bias and frustration about still trying to manage a condition I thought I'd get real help for from them, years ago.

This was the article that brought me here: https://www.uvahealth.com/news/uva-health-launching-comprehensive-national-program-connective-tissue-disorders/

In my experience, often the patient service/customer service recommendations in corresponding with the EDS Clinic at Jacksonville have been inaccurate. For example, I can't contact them in the portal as Colleen suggested because my only provider was Dr. Knight, and given that he doesn't work there anymore, there is no one for me to contact. They also won't see me again for follow up "because I've already been seen."

Others have reported positive experiences, and maybe it's different now. Where are you located? I've come upon a few really good virtual/online resources and services run by PTs. They can't diagnose, but they can help manage symptoms and provide support to better advocate for yourself while you're seeing a diagnosis.

Ultimately, I got diagnosed at Indiana University by Dr. Clair Francomano, but it's very difficult to get an appointment with her or her team. She knew I'd been seen by Dr. Knight, and she disagreed with his diagnosis, and suspected another genetic connective tissue disorder. That was last summer--years after I planned my trip to Mayo.