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Molls

Updated 10mo ago

EDS Surgeries and Secondary Conditions: Share Your Experience

How many surgeries have you had because of EDS? What secondary conditions do you have? What things did you not realize until much later we’re not normal due to EDS?

Can you help? Connect today

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CT1409

2y

I've only have one surgery, and I'd say it was more because of my POTS than my EDS. I had a port put in in October. I've got POTS and MCAS (trifecta vibes) along with Celiac, Fibro, Raynaud’s, and a bunch of others. My constant dislocations! Rolling my ankle all the time! And my weird scarring! I had no idea those were all EDS things!
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CaringAmoeba23

2y

5. Three right knee, micro fracture, then twice to remove broken cartilage from failed micro fracture procedure. Twice right ankle, ruptured Achilles’ tendon both times.
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DeafFlamingo

2y

I most recently had my first EDS related surgery which was a bankart repair to fix a loose shoulder and labrum tear caused by frequent dislocations. I haven't healed yet but hopefully this will make it so my shoulder will no longer dislocate. I have MCAS and POTS. I had no idea that I wasn't supposed to be as "bendy" as I am . 😥
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Molls

2y

I have had 5 surgeries. I just had a tethered cord release last month. 2 shoulder surgeries last year on the same shoulder due to frequent dislocations. I now have 4 plates in my shoulder. I had a port put in for POTS last year as well. I also had my wisdom teeth out lol
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Danlosdude

2y

I’ve had maybe a little less than a dozen and I basically got the full box of secondary conditions. Pots, Chiari malformation, hypokalemia, epilepsy, Gastroparesis and so on.
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Aur4996

2y

1 so far but a second one planned soon. I had a rotator cuff repair and a capsule tightening in my left shoulder now my right needs the same

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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