Saturday, July 23, 2016

just my thoughts... (oxygen)

Here's a big problem...all services cut off before a brain injury victim is done recovering.(This is my take and not anybody's quote.) "Throw 'em in a box and forget about 'em." Loved ones find out about HBOT. The brain injury survivor isn't getting anything. HBOT is something. The brain injury survivor will benefit of course. There are some other unorthodox therapies having the same effect (for example music, aqua, and equestrian [horse] therapy). There are more therapies. I only list a few. 

All of a sudden, a therapy starts. There's improvement. The therapy is credited. In reality, therapy in general should have been provided all along. HBOT has the added benefit of oxygen. You can get oxygen in other ways. I did. Here's one:

It would be so easy to give a brain injury survivor a prescription for that. Any medical supply can deliver that to your home. If you get mail, you should be able to get that.

Oxygen can then be used in the treatment of brain injury management. 

[I routinely had oxygen in breathing treatments for my tracheostomy, not for brain injury. I see a need for the oxygen part and not the hyperbaric part of HBOT.]

Wednesday, July 13, 2016

Vunder Blunder

Look out!! I'm a wonderful vegetable that comes up with words like 'vunder.' So what is 'vunder'? Me, I guess. I'm a vegetable that makes you wonder.

What is a blunder? A huge mistake.

I am potentially a very big blunder. You see, on paper I am in a coma. It was made permanent when I couldn't speak and now I am never to be conscious. Now that I do communicate, I can't change it back.

My incident was 14 years ago. Yeah that's a long time, but not permanent.

I say I am a potential blunder cuz I haven't "woken up" yet. I'm still in a coma according to the government, What happened will be a big blunder, and here's why...


Here's a refresher on Terri Schiavo. For more watch videos. I don't want to get into a controversial issue, but my situation is so tied to it, that you have to know it. I've taken out most of the emotion in this case.

Terri Schiavo had a heart attack and went without oxygen. She was resuscitated, and given a PVS diagnosis. I believe the P stood for 'Persistent', but it's coming to mean 'permanent.' I've seen both words used. The Florida Supreme Court said her condition would always be that way and her feeding tube removed. You don't have to feed her. The federal government stepped in. It was on TV. It was big. The lady died. The federal government said there was no recovery possible. It went world-wide.

The word 'Persistent' is being replaced with the word 'Permanent.'

Now here I am on the West Coast. In 2002, I have a massive stroke. I'm deemed vegetative, I can't talk or move. The state disagrees with Florida and doesn't terminate me by removing my feeding tube. (My experience is that they disagree. I haven't explicitly heard that.) Later, I start making sounds. Oops, it wasn't a permanent problem. "Oh well, she'll die soon," was the thought. No one knew I was extraordinarily smart and lucky. I got the surgery I needed to stay alive. I didn't die. I've only gotten better and smarter.

Somewhere around the time of that surgery, my diagnosis was made 'semi-vegetative.' I was only half a vegetable.

It gets even better. That surgery I mentioned is not accepted by the government since they didn't pay for it. It never happened. The blood vessel deformity in my head magically disappeared.

That's probably the most vonderful of all blunders.

*I doubt this mistake has any intent. The government is just slow. This means I have time to write. The longer I have to write and make videos, the more stupid this looks.

Sunday, July 3, 2016

A Mess

In Dec 2002 I had a brain hemorrhage. I had a car accident earlier that day and it was assumed to be that. After hours of bleeding, I had to be given blood. I had lost so much that my head was opened to see why I was still bleeding. Doctors saw the AVM, arteriovenus malformation. It was the cause of the bleed. It was embolized (stopped up with glue). It's sort of like a tumor, only it's blood not tissue. An AVM happens when blood vessels knot up and the wrong type of vessel does another's job. It's a big mess that can cause an even bigger mess. (It's rare and don't worry about getting it. You can't catch it.)

AVMs usually start bleeding way before they are noticed. I was told mine was hours before a car accident. It probably was the cause of my accident. I have heard some bleed months before detection. (An AVM is considered a pre-existing condition and mine was not covered by insurance. Mine was there from birth.)

Records say my "blood pressure was resuscitated." My heart was restarted and I was closed back up. It was thought I'd die then cuz I lost so much blood and records do not state how long I was without heartbeat.

I was in full coma 5-6 weeks. (When I opened my eyes I was labeled as PVS, another type of coma. I am writing this. That should be brought into question.)

In 2004 the AVM was removed in a risky procedure at Stanford University's hospital.  Stanford did at least three embolizations and then a craniotomy was done. The embolizations first shrank the AVM. Feeder blood vessels to the AVM were targeted in smaller operations before the final operation. They were closed off by injecting them with a glue-like substance. A final craniotomy then removed the AVM. The embolizations were done as out-patient. I was admitted for the craniotomy.

I believe it was before Cyber Knife surgery was invented. It would have been a precursor, but it was not directly involved. I did have stereotactic radiosurgery. 

Here's Cyber Knife. My embolizations were out-patient.


I went a good nineteen months post bleed with an AVM no one would touch. Only Stanford would do it. The AVM that originally bled and almost killed me, was left there so it could kill me at any minute for nineteen months. That is over a year of I could be dead the next morning. I now don't keep anything and long-term planning has been difficult but is slowly returning.

This video is the same person singing above. The song is about his AVM bleed. He says he has no memory over parts of his. I do have all memory.