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Ehlers Danlos Syndrome, MCAS, POTS, and MALS

Bones, Joints & Muscles | Last Active: Jun 12 9:01pm | Replies (46)
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@colleenyoung

At the risk of taking this discussion off-topic, I want to introduce you to @jenniferhunter, a fellow patient of Dr. Fogelson.

Jennifer, can you suggest a discussion in the Spine Health group to continue the discussion with @gpowr23? I don't want to detract from the original topic of this discussion on EDS.

@gpowr, there are EDS specialists at Mayo Clinic in Rochester should you wish to talk with your Mayo care team about a referral.

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Replies to "At the risk of taking this discussion off-topic, I want to introduce you to @jenniferhunter, a..."
Jennifer, Volunteer Mentor | @jenniferhunter | Mar 12 7:47pm

@colleenyoung @gpowr23, Gail, and I have been communicating because of this discussion about scoliosis and also privately because of her experience after an adverse result of a big scoliosis surgery and she didn't want to cause alarm to other patients contemplating surgery. She is seeking another opinion for Proximal Junction Kyphosis where kyphosis with forward bending happens at the top of an instrumented fusion.

Spine Health - "How do you manage the effect of Kyphosis and Scoliosis?"
https://connect.mayoclinic.org/discussion/kyphosisscoliosis-effects/
We also have these 3 discussions about scoliosis in Spine Health:

Scoliosis
https://connect.mayoclinic.org/discussion/scoliosis-3/
Spine surgery for scoliosis
https://connect.mayoclinic.org/discussion/spine-surgery-for-scoliosis/
Severe scoliosis
https://connect.mayoclinic.org/discussion/severe-scoliosis-1/

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Cassie Marie | @csalter | Jun 7 2:09pm

There are no specialists in Rochester that work with the hypermobile types of EDS. At least, that I am aware of.

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