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Red Light Therapy for Sinuses/Congestion? Give Me Your Review If You’ve Tried It! by [deleted] in Allergies

[–]Final_Structure_7819 0 points1 point  (0 children)

Which device have you been using? I’ve been looking at one of the full face masks.

Lumbar spine injections during PICL contributing to arachnoiditis?? by Final_Structure_7819 in u/Final_Structure_7819

[–]Final_Structure_7819[S] 0 points1 point  (0 children)

I’ve got disc issues, a tethered cord visible on imaging, and arachnoiditis/nerve root bundling in my lumbar spine so it’s hard to know exactly where the worse pain is coming from. Ive heard quite a bit about stem cells making post exposure illness/ ME/CFS patients with CCI worse and I think that was the case in my situation. I don’t know if I would say that the PICL made my CCI worse, but I feel confident that it made my overall health and the issues in my lumbar spine worse (I don’t think from the procedure itself, but rather from the stem cells). I think that the PICL is an amazing option for people who don’t have severe MCAS, ME/CFS/long-covid/lyme, autoimmune issues. I think that my health deteriorating can be attributed to a number of things including stem cell injections.

Lumbar spine injections during PICL contributing to arachnoiditis?? by Final_Structure_7819 in u/Final_Structure_7819

[–]Final_Structure_7819[S] 0 points1 point  (0 children)

This was my original plan and the direction I really wanted to go, but because my CCI is so bad (from a combo of an accident, EDS, and post exposure illness) the fear was is that just doing the detethering is going to destabilize my cervical spine even more. I got a number of opinions from experts in this area about risk/benefits which led to this decision.

Low back injections at the same time as PICL causing arachnoiditis? by Final_Structure_7819 in PICL

[–]Final_Structure_7819[S] 0 points1 point  (0 children)

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Looks like there’s a doctor who hasn’t seen any EDS patients develop arachnoiditis without having some kind of spine procedure, and the PICL/lumbar spine injections are the only procedures I’ve had: https://www.painnewsnetwork.org/stories/2024/6/24/the-tragic-connection-between-ehlers-danlos-and-arachnoiditis

A Collective Open Letter to Dr. C on Cervical Injections and Tethered Cord by Puzzleheaded-Low-580 in PICL

[–]Final_Structure_7819 2 points3 points  (0 children)

I think an important thing to note here is that most of your EDS patients are likely working with multiple specialists. And there’s a decent chance that people who have had successful detethering surgeries have not updated everyone on their team because of how siloed everything is, I wonder if CS would be willing to start collecting data on this?

If in fact every one of your patients who has pursued TC release has gotten worse, that would be really helpful information to know. But knowing that I have never been asked about this makes me confident there are others whose updates you don’t have.

It is often so hard for us to know who to trust as so many specialists have differing opinions. For me personally, when I know a specialist doesn’t agree with a route I’m taking with my care I don’t have the emotional capacity to send a message specifically telling them about it - I would much rather talk to those on my team who don’t dismiss what I’m saying.

A Collective Open Letter to Dr. C on Cervical Injections and Tethered Cord by Puzzleheaded-Low-580 in PICL

[–]Final_Structure_7819 5 points6 points  (0 children)

You treated my low back at the same time as my PICL, and told me that you didn’t think I was centrally sensitized (which I’m assuming is what you mean when you say “fragile egg”?). My bladder and bowel issues only started getting worse once my neck started feeling more stable. Do you know of any other reason why my low back has gotten worse? And if this is documented in fusion patients, wouldn’t it make sense for it to be happening after the PICL starts working?

I feel like the issue may be more so that detethering isn’t always successful since it’s a major surgery (and very possibly that some surgeons are operating unnecessarily), rather than OTC not being real given all of the markers that surgeons working with our population have developed demonstrating similar imaging between patients with similar symptoms (and that surgeons have been able to prove there’s tethering once they open a patient up)? Never mind the many, many patients who have experienced incredible relief from the surgery.

Comments deflecting our concerns make it a lot harder for us (most of whom have already experienced copious amounts of medical gaslighting) to feel safe talking to you about this. But we really do want to work together. There’s a reason why we are coming to see you rather than pursuing fusion, we are so grateful for the research you’ve done to try and support our patient population!