Thread by @julierehmeyer

An update on me: I've continued to have no neurological problems since my second tethered cord release. I also have no post-exertional malaise, though I'm still recovering from surgery and can get tired out fairly easily. I can walk a mile or so with no problem. #mespine 1/

No seizures, no paralysis, no inability to speak, no difficulty breathing.

My mold/MCAS issues have decreased after the three surgeries. I'm back home, after years when I couldn't tolerate sleeping in any buildings. 2/

I don't have significant sleep problems now. Fatigue is only a problem with too much exertion, but that seems to be just part of the healing process, and my tolerance for exertion is steadily increasing. My cognition is working fine. 3/

My biggest problem at the moment is back pain. But get this: The solution for it is... wait for it... exercise! In particular, swimming, which gets the blood flowing through the back muscles, seems to be making a huge difference. 4/

I'm very out of shape -- being bed bound, as I was for months preceding each surgery, leads to deconditioning in a way that even being housebound hasn't for me. My first time swimming, I did four laps, as slowly as I could, with rests in between. So I'm working hard on PT. 5/

Even though I still have a long way to go on that score, what a thrill it is to be able to exercise, and to have it make me feel better rather than worse! I'm incredibly grateful for my surgeries -- though I also dearly hope we find non-surgical solutions for these problems. 6/

I think one of the lessons of my story is how deeply interwoven these problems are. ME/CFS, mold, MCAS, dysautonomia, SIBO/dysbiosis, infection, tethered cord, and craniocervical instability -- and autoimmunity and EDS (which I don't have) -- all tie in together. 7/

I also think my story suggests that even for pts like me wo EDS, connective tissue is key. Degrading/misbehaving connective tissue is the culprit in both CCI and tethered cord. And connective tissue is degraded by the immune response to mold and infection. 8/

In any case, I just want to say that I'm grateful grateful grateful. 9/9

One more comment: While @jenbrea , @jeff_says_that and I are the most prominent ME pts with #mespine issues, there are 100s or maybe 1000s of others who have found they do too. Results from those who’ve had surgery vary. Many have had major improvements, but some have worsened.

Pursuing this requires an enormous amount of pt education — and caution. The best way to learn is through the ME/CFS+ Brain and Spine FB group. These surgeries are brutal, so they only make sense for those who are really sick. We need better tx to keep pts from getting so sick.