Medical Incidents – Joe Crawford

List of Incidents (An Incomplete Work In Progress)


Recent Emergency (May 2025)
CLCN1 caused jaw clamping which shattered a tooth.

My recent emergency, was that my jaw muscles clamped shut so hard that I shattered another tooth. I needed to get surgery done by a proper oral surgeon (not just a dentist). It was difficult for the surgeon to take all the broken pieces of tooth out of my gums. Thankfully, he got it done. I am very grateful.

At the moment, my jaw muscle tension remains, and it is quite sore all the time. If I'm not actively trying to keep my mouth open, then it clamps shut really hard, even while I'm awake. (So although something like a nightguard might help, it wouldn't actually be a solution.)

Long-term, if unaddressed, this jaw tension will break more of my teeth.

As a long term solution, my doctor's best idea is for me to get botox injections in my jaw muscles, in order to keep them in a weakened state. They would still work, they simply wouldn't be so incredibly strong.

As a temporary solution, short term, I hold a piece of thick cloth as a cushion between my back teeth, on the right side. For now, that's protecting all my teeth, since they can't make direct contact with each other.



Heart Stoppage Due To ECT
During electric convulsive therapy, heart stopped for 1 to 2 minutes.

ECT electro-convulsive therapy was a very effective therapy for pain relief, in myself. Once every six weeks, I used to get it in the hospital, where I was put unconscious under anesthesia, while my body was electrocuted. The treatment's exact method of function has never been something science has understood completely. However, in my case, my best doctor told me that it likely "reset" or "cleaned up" my sodium channels somehow, leading to less neuropathic pain.

Unfortunately, for obvious reasons, electro-convulsive therapy is extremely dangerous. It is essentially a last resort treatment that isn't used until all other options have been exhausted. It is usually used for depression. In my case, my doctor recommended it since he said it actually would actually directly treated the pain itself which it did.

Fortunately we have found other medications to help mitigate the underlying CLCN1 (baclofen and other more specialized druged.) Thus, ECT isn't so necessary anymore. I have stopped receiving electroconvulsive therapy altogether, Due to the danger (including heart stoppage) and the other serious side effects of ECT.

ECT was, for a time, a miraculous treatment for me, even though it was dangerous, and had severe long term side effects (which I still struggle with). I do recommend ECT for pain, but only in situations of absolute desperation.



Additional/earlier incidents will be added to this list in future.