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Ehlers Danlos Syndrome, MCAS, POTS, and MALS
Bones, Joints & Muscles | Last Active: Jun 12 9:01pm | Replies (46)Comment receiving replies
Hi Colleen,
Thanks for the links.
No, I'm actually in the Boston area.
I'm in the process of applying for surgery with Dr. Fogelson, a 2nd spine surgery, the first one was in Jan. 2023.
My recovery may have been affected by some sort of "connective tissue disorder"- I had genetic testing about 10 years ago- when there wasn't yet a test for hEDS.
Replies to "Hi Colleen, Thanks for the links. No, I'm actually in the Boston area. I'm in the..."
Hi @gpowr23- I hope the other links and moderators/volunteers are helpful and it's great to see them jump in to help point you forward 🙂
You may be aware of this, but just wanted to say there isn't a genetic test for hEDS. It's the only form of EDS that doesn't have a genetic test. Instead, there are diagnostic criteria: https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf
In theory, any physician (a PT actually did my first one, but I don't think they're able to make that type of diagnosis) can review it, but at least in my experience most providers don't consider themselves to have enough experience to do so with authority. But if your care team at Rochester thinks a connective tissue disorder like hEDS or HSD might be impacting your recovery, maybe it would be worth asking for a consult with one of the EDS specialists there?
Turns out, I also have scoliosis and had a spinal fusion. It's rough. I'm wishing you all the best with your recovery.
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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.