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I'm starting to get irritated again. Though maybe I'm over reacting a bit due to having been awake 30 hours and my pain is like 50% worse today than ever.

I finally got answers to a few of my issues (i.e., dual brachial plexus injuries, severe traumatic nerve damage, freaking c5 is an asshole, oh and I'm going to die slowly and painfully) but turns out, as it always does, these answers were only half of it.

Whether to save me the added devastation when I've just been given the worst diagnosis I could get, or to keep me hopeful of at least thinking my past doctors were just ignorant, or maybe it was just absentmindedness, but my neurologist failed to mention some crucial information that could have changed the game from negligence to downright malpractice dating all the way back to my birth and continuing forward from almost every doctor I've seen since.

When I was born I had a traumatic postganglionic brachial plexus injury which I underwent months of physical therapy for without any pain relief because fuck I guess newborn infants don't feel pain or whatever.

Turns out, they neglected to tell my mother nor my grandma (bear in mind my mother was barely 18 and had absolutely no idea about babies so my grandma was like my other mom) but no one told them how traumatic postganglionic brachial plexus injuries are THE WORST nerve injury possible with THE WORST prognosis. Including debilitating loss of function, neuropathy, muscular atrophy, and potential to have the nerve paralyzed.

Now, I recovered acceptably from my birth injury, but no one actually recorded any of it in my medical records AND no one did any sort of nerve tests or ANYTHING to check if there was any damage to the nerves or nerve roots. If they had actually done what was necessary they would have seen I had severe nerve damage and nerve that had been actually torn out of my neck. They could have done reconstructive surgery on my brachial plexus and neck to repair the nerves so they could heal properly but they chose to ignore it.

So regardless, I was actually set up for this horrific disabling agony from birth, because no one bothered to actually look at my nerves or check me out aside from "well she can use her hand now so ALL BETTER!"

that means my second brachial plexus injury was all because douchebag doctors didn't bother to actually correct the one from my birth. They LAZILY decided I didnt need to be tested for anything and therefore they did not correct the original damage and THATS WHY I HAD MY SECOND INJURY. FROM THEIR FUCKING NEGLIGENCE.

and that, ladies and gentlemen, brings me to the halfassed care I received for my secondary TRAUMATIC BRACHIAL PLEXUS INJURY.

the surgeons who worked on my shoulder did not bother to look at the nerves, brachial plexus, or neck. They knew I had a previous brachial plexus injury and erbs palsy, but blatantly ignored the possibility of a catastrophic nerve injury.

The CRPS develops when damaged nerves go untreated and start going haywire.

This means that had EITHER of my injuries been treated PROPERLY and PROMPTLY my entire suffering up to and henceforth could have been minimized had SOMEONE in the 20 DOCTORS I'VE SEEN actually listened or paid attention.

And even now, it took my OWN RESEARCH to learn that I had not one but two of the absolute worst nerve injuries to ever exist go untreated, because even AFTER finally figuring it all out, no one bothered to mention that the reason none of the neurosurgeons wanted to operate is because the damage is just too extensive and that there is absolutely no chance of helping at this point because of the past doctors negligence to properly diagnose and treat me.

ALL OF WHICH I can understand and let go. It's the fact that no one told me just how bad of a prognosis I had from the get go. That is like lying. It is lying by omission.

I'd rather be told flat out just how bad the prognosis is than be told 'nope theres nothing wrong'

Tl;dr to summarize: I learned tonight that my already terrible prognosis is actually triple bad and it could have been avoided if the neurosurgeon who looked at me when I was born actually did his job to test me and then explain to my mother that i will probably have severe damage the rest of my life and to actually be careful not to further the damage least I develop a horrible degenerative pain disease that will destroy me.

My nerve damage is three times worse than anyone told me. I don't understand why no one mentioned that fact.

I'm going to sleep.

LadyAlyxandrea 8 Jan 17
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