Why is the “new” EDS Clinic impossible to get into?

Posted by motherofbrutus @motherofbrutus, Oct 29, 2021

I’ve been a patient at Mayo for years- and in 2017, went through the “steps and people” to get into the EDS clinic, where I passed/failed with flying colors… I was in line after doing the skin biopsy (positive for collagen flowers) and genetic testing (COL5A1 and COL1A1 mutations) to be seen by the “old” EDS Clinic before the head of the department left to start his own clinic. I was in the process of having a TTO (Tibial tubercle Osteotomy) as my Hail Mary right knee surgery with Dr Ortiguera and he insisted I get tested before I had surgery because he looked over my previous Mayo joint surgeries and saw me walk. So, I started the process, then went into surgery when we knew I had a genetic variant. Recovery was 12 weeks of 23 hour/day bed rest and then physio for 3 months, so if I didn’t HAVE to travel, I wasn’t allowed. When I resumed trying to get into the EDS clinic, the clinic was closed. Flash forward to 2020, and I had a 2 part clavicle and AC/CC surgery by Dr Crow. After I finished that recovery, I started to try to get into the “new” EDS clinic: via Mayo Pain Mgmt, my Mayo Surgeons, Mayo Primary care… it’s October 2021 and there still aren’t any openings. I have Mayo specific health insurance, I’m very well documented, I have been diagnosed not only with cEDS, but also POTS and now after my shoulder surgery, realistically MCAS, and in the past 7 years, I’ve had 11 surgical procedures at Mayo. I basically have everything done at the Mayo.

I have been calling daily for cancellations and have had 2 or 3 referrals from different Mayo practitioners for Dr Knight. Currently I’m waiting to have my second hip reconstruction and I’m desperately trying to figure out where I’m going wrong…. Is it always this difficult for established Mayo patients with known EDS to get into the clinic?

Sorry about my winging, I’m a bit frustrated, as I was in the WR 3 days ago with a recurring dislocating jaw, and my shoulder, hip, and jaw are killing me

Any advice is greatly appreciated!

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@motherofbrutus, no apologies necessary for "wingeing". I can only imagine how frustrating this is since you are already a long-time Mayo Clinic patient and you're in pain.

The Mayo Clinic Ehlers-Danlos Clinic is experiencing significant demand for services, over and above what was originally anticipated. Consequently, there is an extensive waitlist for the new clinic. As the clinic continues to work through the waitlist of patients, be rest assured you're not forgotten. The plan is to add additional providers in 2022, to respond to the unexpected and overwhelming demand for EDS services. I realize that doesn't help you right now. But spaces will open up in the future.

If you need medical care immediately, have you considered searching the Ehlers-Danlos Society website for providers in your area?

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