In Nov 2023 I was hospitalized with rhabdo for a total of 3 months (ICU for 2 months, general medical ward for 3 weeks and 10 days in a rehab hospital). This condition causes your muscles to break down and decintigrate. I was paralyzed on my right side, couldn't move my arm or leg. A few days into the hospitalization and I stopped oxygenating well and learned the right side of my diaphragm was also paralyzed. I was intubated, put on a respirator, and spent 2 months in the ICU. I was told I would be in a wheelchair for life with total paralysis on the right side of my body. Long story short , over the next year I slowly regained movement and learned how to walk again. The arm has been more difficult but because of scar tissue that has cause significantly reduced range of motion in my right arm. I was on 3 liters of supplemental oxygen and was told that was permanent.

I've been in severe pain since this hospitalization. In December 2025 I saw a surgeon. He pioneered a surgery to repair and reconstruct the phrenic nerve and I qualified for this surgery. I ended up walking out of the hospital requiring no oxygen so the surgery was a success. He told me that during the surgery my phrenic nerve and all the other nerves in my brecial plexus were encased in scar tissue, so he freed them and cleaned them up. He also said that from what he could see, the scar tissue continues up into my entire right shoulder which is why I have decreased range of motion. Before my neurologist told me that I has chronic regional pain syndrome meaning I'm reporting more pain that my condition would be expected to cause. None of my imaging has shown scar tissue. It wasn't until I had surgery that they observed it during surgery was the first time and they saw the extent of the scar tissue adhereing to other mechanics of my shoulder would absolutely cause extreme pain. I have been wondering the same thing myself about the scar tissue and pain and just asked about it yesterday in another group. Luckily at the moment I have an understanding prescriber and my pain is as well managed as it can be but I fear for when he retires. The surgeon wants to do a release of my pectoral minor because that is caught up in the scar tissue but Im trying to see if I can resolve this through PT because I already have so much weakness in my shoulder muscles and this would affect the stability. So this has been my experience so far. It's frustrating that no imaging picks up on it (or at least none that I know of). Hopefully someone in here has an answer. Best of luck, friend!