/ surgery \

It’s often an inevitable part of EDS unfortunately. We are instructed to try physical therapy first, maybe steroid injections- less invasive measures if possible. When all else fails, we often need surgery.

My left wrist has been bothering me for quite some time. On and off for years, but more specifically and consistently since October of last year. I had a very minor fall last autumn, but it doesn’t take much when your joints are loosy goosy. I developed two cysts that are deep and pressing on a very painful nerve. In addition I have swelling in the surrounding tendons and the combination leaves me unable to bear any weight on that wrist.

I tried PT and steroids, but neither of those would remove the actual problem. One orthopedic surgeon recommended a splint and more PT (too conservative at this point). A second recommended she do a full wrist arthroscopy and explore the surrounding tissue to see what’s wrong (a bit too invasive and unnecessary). A third recommended he excise the cysts and send them off for biopsy (they’re technically tumors and although malignancy is doubtful, it’s important to rule it out) and see if their removal relieves the pressure and crowding of those nerves (juuuust right).

I haven’t set a date yet. I have to see when it makes sense regarding my work and kids schedule. Probably in about six weeks or so.

I’ve only had two prior surgeries to this one. I’m thankful this procedure is nothing more pressing at the moment. I’m also thankful for second (and third!) opinions! The second surgeon was really pushy, and super impersonal. I felt like I had to do what she wanted, but it felt so wrong in my gut.

Surgery is deeply personal. Someone is literally inside your body. Having that person be qualified to be present and skilled both clinically and emotionally is priceless.




#ehlersdanlossyndrome #EDS #zebrastrong #POTS #MCAS #mastcellactivationsyndrome #craniocervicalinstability #CCI #dysautonomia #hashimotos #chronicillness #spoonies #alopecia #alopeciauniversalis #surgery #chronicfatiguesyndrome #CSF #ME #butyoudontlooksick #invisibleillness

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