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.

Friday, June 24, 2016

Is it too good to be true?

Excuse me, but I used to be blind in my right eye and now I'm not, and nobody sees that as a big deal?

I've thought it was rewiring mainly, but I recently read that an over-the-counter eye medication is reversing the damage caused by MS. Could this be the same thing happening with brain injury? Eye drops or my body...both should be looked at.

"A common antihistamine used to treat symptoms of allergies and the common cold, called clemastine fumarate, partially reversed damage to the visual system in people with multiple sclerosis (MS) in a preliminary study." What brand is it in? Tavist came up.

I take a different medication. I use Naphcon-A eye drops. They are both allergy medications. At home, I will put the eye drops in as soon as I get a burning sensation in my eye. The burning stops immediately. To note, my eye may have already been closed for an extended time. It would not be dry eye. Long ago, when Naphon-A became OTC, my doctor said it was a "vasoconstrictor." It works by narrowing the blood vessels in the eye. I'm pretty sure what got me here was vascular. I had an AVM (arteriovenos malformation) bleed. I know, "'had." That's past tense. It's now gone. Isn't it a vascular problem? Blood vessel dilation and constriction is also vascular. There may be correlation here.

I do know I see now with both eyes. I may not be legally blind anymore. I would still be low vision, probably. Testing is not covered.

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. 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.

Thursday, June 9, 2016

I'm Here

I don't know what I am, but it is definitely not vegetative.

A grad student once proposed that what I have is more like an extension of Locked-In Syndrome. This person knew nothing about how I previously believed that I had Locked-In Syndrome compounded by a vision problem. This was then misdiagnosed to be vegetative.

I could not respond to letters on a letter board if I couldn't see the board.

Isn't this the problem of poor academic performance? For years students who performed poorly were found to need glasses?

I was just the extreme. I've had improvement in vision, but progress has been as slow as everything else.
Now here's an idea...people who are conscious in a coma aren't in a coma at all. They have a severe form of Locked-In Syndrome where there is absolutely no movement; not even the eyes. This person appears to be in a coma because they can't open the eyes.

I can propose this idea of a severe LIS (Locked-In Syndrome) because I could hear before my eyes were open. "Hearing was definitely first. I could hear before my eyes were even open. Coma scales talk about lighter coma as it ends. This would be that." Researchers will be interested in this essay. I list the order of the skills I have acquired since opening my eyes.

On top of everything, I propose I have Savant Syndrome. I would remember something as little as hearing in a coma so long ago. You would also get this analysis, all typed with one finger. (By the way, as I type, I notice my left eye is shut. This is probably my body's way of treating low vision in my right eye. Remember the doctor patching the stronger eye in children? The same thing is happening here.)

All kinds of people have suspected I was Locked-In. I never had to tell them the suspicions I once had. "For two years, Angela suffered the “locked in syndrome”!  This is a horrifying condition in which the patient is conscious and yet has lost virtually all motor function."

What I now have is more likely related to what I once had. I never thought it was Persistent Vegetative State.  I suspected Locked-In Syndrome. There wouldn't have been a regaining of consciousness at all. I have had progression to higher consciousness, but Locked-In Syndrome is already conscious. I've been conscious the entire time my eyes have been open.

What about people already conscious in a coma? Well, they really wouldn't be in a coma, now would they?

Is there anybody in there?
(A savant has to have some music somewhere.)

Monday, May 23, 2016

Looks Can Be Deceiving

I was one of these It makes sense to me now.

I was very much aware of my surroundings but I don't look like I am. My youngest daughter is at home. She says I have "bitchface." I looked at my face in the mirror. I show no affect. There's no emotion whatsoever. Happy, sad, angry, or surprised, I don't show it. Here's more on Resting Bitchface Syndrome,

Treatment has been given due to looks. I look like a vegetable so I am placed with vegetative patients.

A music therapist describing me at a hospital... "They put Angela in a wheelchair right in front of me and told me I could start playing. While I played Angela said to me, " I used to play that song on piano." I was shocked that she was able to speak and carry on a conversation - even though she was a little hard to understand in the beginning,"

I describe another situation, "I was at a new hospital (there were many in my long stay). I was fed up by then with new staff having to learn my qualities. So I had a bit of an attitude.

I could hear a nurse outside my room in the hall.  She was talking and laughing with her friends. She came into my room and she changed. She spoke to me very slow and simple, like I couldn't understand. I was getting angry, and she continued. I was just getting angrier. Finally she finished. Lucky for her I'm a smart-ass. I said, "You must be special."

She stopped right there. "What?"

I have been starting to smile. Hopefully that makes a difference. My bitchface can fade away, then.

This came out recently,

How Some Patients in a Vegetative State Can Retain Awareness, Despite Appearing Unresponsive

Neuroscience News

When I first opened my eyes I understood that two hospitals were competing for me while I was in a coma. Why? Probably this, or, me showing consciousness. Something while my eyes were closed must have indicated to doctors that I would regain consciousness. Sorry guys, it took longer than there was funding.
Not only am I writing, but the concepts require serious depth. The issue of savant syndrome gets pulled into this. I finished high school when 16, as well as other early stuff. Savant syndrome might get muddied in this. It might be the answer. Technically, though, I am unconscious on paper. So only I ask those questions.

Since I am writing, there is absolutely no question about my consciousness. Why the government continues to question whether I am conscious or not is a good question. Are they worried something bad will happen?