Thursday, June 16, 2016

Amazing On Top of Amazing

In the beginning of my disability, I thought I had Locked-In Syndrome. It was mistaken for being vegetative, or PVS. "THE WALLED IN ALIVE DISEASE! (French term for locked-in syndrome)" is plain to see here.

Locked-In Syndrome is already amazing. "Locked-in syndrome is a rare neurological disorder in which there is complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes. Individuals with locked-in syndrome are conscious and awake, but have no ability to produce movements (outside of eye movement) or to speak (aphonia). Cognitive function is usually unaffected. Communication is possible through eye movements or blinking. Locked-in syndrome is caused by damaged to the pons, a part of the brainstem that contains nerve fibers that relay information to other areas of the brain."

I had an AVM bleed in my cerebellum. An AVM is an arterialvenous malformation and what I had was comparable to an aneurysm. I had an AVM stroke. The bleed was next to the pons, and I remember the pons was specifically mentioned. Locked-In Syndrome is associated with damage to the pons.


What is more amazing is this was never written down until the above by Dr Morse (years later when I wasn't Locked-In anymore). What was written down was that I was vegetative, or PVS. I was in a coma. The Locked-In Syndrome is called "pseudo-coma."  "Locked-in syndrome is also called pseudo-coma because affected individuals are conscious but make little body movement – like unconscious “eyes-closed” coma patients or unconscious “eye-open” vegetative state patients." I was vegetative, eyes open.

It is classified as Classic, Incomplete, and Total. I am guessing I was Incomplete. I did shake my head early on, so I did have some movement. As time went by I gained more movement.
It is possible to have some recovery from this disorder. The following study uses fourteen patients. This is a rare disorder. It would be difficult to find 14. "In a series of 14 patients with classic or total locked-in syndrome seen 3 to 6 months following neurorehabilitation, motor recovery was found in 21%; return of swallowing in 42%; verbal communication in 28%; bladder and bowel control in 35%; and weaning of the ventilator in half of the patients,"  

Some recovery is possible. It doesn't always happen, but it has. It is not a miracle. I've looked exactly like this. I do not look vegetative right now. I look like that description.

So I've had something that is amazing, and I've made a more amazing recovery, but it has been mislabeled. It all becomes a miracle. On top of what is already amazing, I propose I may have one more amazing thing. I propose I have Savant. Syndrome. You are reading (following) this aren't you? Case closed. Without it, a severely brain injured person will have difficulty communicating in this manner. I know a few brain injured persons with blogs. None of them are PVS. PVS is yet to communicate.

I already do this, "Those who recover some motor control in hand or head (as will over half of the patients) can use this to communicate with a computer and sometimes control their wheelchair." I am using this computer, and I use my electric wheel chair. Due to the Savant Syndrome, I propose I will be doing more. My control and range of motion are already considerably more than when I was in the hospital.

It is possible that I was vegetative, PVS, and my progression has been towards Locked-In Syndrome. My case should have been updated along the way. It is possible there was misdiagnosis of my condition initially. I was in a pseudo-coma when I first opened my eyes. Either way, I am not vegetative and my records should reflect that.
I am listed as PVS, Permanent Vegetative State. (When I started making sound, I was trained to say my diagnosis was "Semi-Vegetative.") I'm saying a goof was made. I am not permanently a vegetable! Back then I should have been listed as Locked-In Syndrome. It's too late for tests now as I'm not locked in anymore. Questions of consciousness should not be directed at me. LIS is conscious. My current state, PVS (on paper), is not conscious.

UPDATED 3/16/2017

No comments:

Post a Comment