AVM Bleed

In 2002 I had an Arteriovenous Malformation (AVM) that bled. This video shows a simple AVM and repair.

A second bleed would kill me. Most would have died from that first bleed.

The AVM was removed in 2004 in a risky surgery that only a private university would do. I had to sign many papers. The place couldn't be sued if I died.

Obviously, I survived.

 

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This is where a government error lies. The surgery wasn't in their parameters. So it didn't exist and never occurred.

The way they had it figured, a second bleed would kill me. Family was told I "wouldn't make it to 40." (I'm 45 as of this writing.)

No AVM meant there was nothing to bleed. An early death should have been erased. If case management was done, this would have been taken care of. Instead an error was carried forward.

Now it's a miracle I'm still alive. (This is erroneous thinking.)

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Give that university, Stanford, credit for the skill of it's doctors. The process wasn't easy. It took over a month. There was no magic.

The video shows a procedure called 'embolization.' I had a few at Stanford before the AVM was removed. This video is simple. It is done one time and is represented by the blue line going up the woman's body. It then shoots a substance, glue in my case, into feeder blood vessels of the AVM. I had brain surgery through an incision in my leg; amazing!

My AVM was eventually removed after a few of these. Routine brain surgery was done for that.

As you can see, there was no magic.

Dualism: The Mind and The Brain

 THE MIND AND THE BRAIN

I can say they are definitely two separate things. How? You are reading this.  You have to know my story. In the past, someone in my condition wouldn't be able to communicate with you. But technology is changing that. Look at this video, but watch how he is communicating:  
 

Just because his body doesn't work doesn't mean he can't think. I used to have something similar to that computer set-up. A dot of some sort of material was placed on my forehead and I'd play a game to learn how to manipulate a cursor on a computer screen, a head mouse! I've been in the same boat. As time went on I didn't need that. I started making sounds which led to talking, and it has been documented that I now type with one finger. "Angela Ronson suffered a major AVM bleed and stroke with massive injury to her entire brain.  She was in a coma, semi-coma, and ultimately the “locked in syndrome” for a total of 7 years.  Yet she has made a full neuro-psychiatric recovery, with her personality and memories basically the same as prior to her massive brain injury. She speaks, can use her arms and fingers, and  is even starting to walk again!" http://spiritualscientific.com/DrMorseBlog/2010/11/08/angela-ronson-part-2-consciousness-heals-the-brain/

So, I obviously had ideas in my mind, but not the brain capacity to get them out. They would have to be two separate things then. It has been taught, "The brain is the mind." I say that is only part of it.

What is the soul? According to dictionary.com it is "the principle of life, feeling, thought, and action in humans, regarded as a distinct entity separate from the body, and commonly held to be separable in existence from the body; the spiritual part of humans as distinct from the physical part." I don't think of the soul as thinking. I think of the mind doing that, though.

So all this time I was in a body with no working brain (other than bodily functions), yet I still had thoughts and ideas in my mind. That makes a strong case for two separate things.

 

***
Brain injury,
I am saying your mind is still the same. Your brain is different.  

Updated  12/11/2018

 

The Description

This isn't like anything I've ever seen or dealt with. I'll describe it as best I can. I did a developmental profile http://thoughtfulveg.blogspot.com/2011/03/developmental-profile.html, but I find that to be lacking in some areas.
 

I'll begin with the injury. It's mostly my account, with some bits and pieces from friends and family as I was unconscious for parts. I had a severe brain injury and was in a coma. When I woke I was brain dead and tetriplegic (could only open/close my eyes) ...then quadriplegic...then hemiplegic...then hemiparesis...now left-handed (was right). I couldn't talk, and I had dysphagia. Now I talk and orally take Ensure (just a little). I obviously am not cognitively impaired (surprising considering the severity of the bleed). I've been in 5 hospitals, including Stanford, where the embolizations and last craniotomy were done. Also, there has been a sub-acute hospital and 2 nursing homes (licensed and not) from 2002 to 2006. I now manage in my own home with a home care person that visits and is funded by a state program.

I had an AVM bleed. It was located in the cerebellum, right next to the pons, and the way it bled was also like a brainstem bleed. Although I immediately sought medical attention at a clinic, I wasn't taken to a hospital for surgery until hours later after I lost consciousness. After surgery, I remained in a full coma for 5 weeks.
 

Throughout all of these years of recovery, progression has been slow. The first year was faster, as I had private insurance, but has slowed to a snail's pace with switching to government assistance. It is still progression, and hence, I would call it recovery.

In the first year I was like

The person in the video was Jean Bauby, the editor of Elle magazine. He wrote a book using one eye. I now write using one finger. It is much faster. 

I'm not like that anymore. My progression can be seen here http://www.flickr.com/photos/angelar70/sets/72157625839268830/.

So,  initially coming out of a coma I could not move or speak. I could open my eyes and I could hear. (The latter part of the coma I could also hear.) It took intensive rehabilitation to be able to sit in a wheel chair (as opposed to laying in bed). That took a specialized wheel chair and a contraption called a "head positioner." One thing I think should be noted, all medical issues had to be dealt with and close to resolved before working on developmental skills. Before I left the rehabilitation hospital I started making sounds. They scoped me-put a camera down my nose to look at my vocal cords. All was found normal. Nothing more could be done as my insurance had run out and I switched to the government Medicaid program.

I had to leave that hospital. I went to a nursing home on the other side of the state. It was a drive for her, but a sister did visit. After a few months, that care home moved me to an unlicensed home. I got sick. My mother had to drive a few hundred miles to come get me and take me back to the hospital. I had pneumonia.

Another placement was found after that. I was there even less time before ending up in a hospital. This time no water. The owner of that place was already in jail as I understood, for fraud. That place was already sanctioned, and a state investigator came to ask me questions. I was there only 2-3 months.
 

Something else was going on. A week before I left that place, I started the process at Stanford for removal of the AVM. Up until this time it had been growing to pre-bleed size. The idea was simple enough-there would be several embolizations to shrink the AVM. It was too large to be surgically removed. Once small enough, a craniotomy would be done. This process was successful and spanned 2 months. It took 3 embolizations before a craniotomy.

When finished I was at a different hospital, not the sanctioned long-term care facility. I was in this new hospital the longest from 8/2004-3/2006. I got my trache out there.  After there, I only moved because that particular hospital unit was closing. (I probably could have remained hospitalized another year.)

The trache was in at this time, but I was completely weaned from the ventilator during the day. I was on it at night.

Had surgery to close trache hole that wouldn't close on its own.

Now I live independently. I rent a small house next to family. I have a home health aide visit 3x/day. I've received the maximum in Outpatient Rehabilitation that Medicare allows. I know it's not enough, but I am afraid the public doesn't know. So I've written a detailed description of what to do http://braininjuryknow.blogspot.com/ I mostly want http://braininjuryknow.blogspot.com/2010/12/rehab-at-home.html to be stressed.

So, I continue on my own with no one's help (although that would be nice). Where am I now?

I'd like to stress- I AM NOT FOLLOWED BY ANY DOCTOR OR ANYTHING MEDICAL Since I am the closest thing to a professional, and have all my mental faculties, I will document as much I can and make it public on the internet (I shouldn't). Also, I believe this to still be recovery from the initial injury. Biological stability isn't enough. Since the brain is involved, there must also be developmental stability (and there hasn't been in my case).

* UPDATED 11-7-2012
* UPDATED 7-20-2015