Tuesday, August 23, 2011

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

3 comments:

  1. What an impressive accomplishment you have made on your own. However, you shouldn't have to and our current health care system should be solving these problems and helping you to maximize your recovery and your life potential. For anyone else reading, I knew Angela before her injury and have been amazed to see what she has done for herself. I certainly don't have her strong will!

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  2. I am always so encouraged and inspired by your writing Angela! As much of an effort as it is for me to function, and participate in the groups and internet sites, I know it is even MORE of an effort for you! Thank you....Not many people inspire me...You DO! I would love to meet you some day.

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    1. Right now I can't be studied (cuz of some wording), so I try to make things public.

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