Where's the Miracle?

 

I am not in a hospital, care home, or any other facility. If I was, I doubt that I'd be here. I was sent home to die back in 2006. I never did die, I'm actually healthier.

I was supposed to die from an AVM bursting in my head. (Like an aneurism) That's not possible anymore. The AVM is gone. Stanford removed it in 2004. There's nothing there to bleed.

As for providing for my immediate medical needs caused by an initial bleed... I knew what to do. In former employment I have been a care home shift supervisor, a (medical in nature) social worker, and an early intervention program manager. I was more than qualified.

Doctor's usually don't give surgery 

instruction during their own surgery.

That is what I am doing. I am not a doctor. I am a patient who says what to do next and my speech is hard to understand.

Giving instruction on how to care for a patient isn't new for me. I did this as a shift supervisor in a care-home. I had to train new staff and a care home is all about giving care.

Maybe if that last hospital that gave care that I was at had wrote down that I could say a word it wouldn't look so fantastic. Each step of my care can be said in 1-3 words. I could do that. After years of doing that, those words became sentences.

Nothing here looks fantastic. That's because I filled in missing information. Whenever something has been missing it is filled in with God or magic by other people.

Talking has been a big mystery. First off, this writing is not speaking. I think the first e-mail I sent was to a doctor in Belgium in 2006. It took a couple days to write the message and it was only a few sentences. This was after I got out of a hospital. This was the right person to write, though. I was coming out of Locked-In Syndrome and he has written on it extensively. As for speaking, my first words were never charted? I was still in a hospital at that point. I can't help lousy paperwork. My writing has never been documented by the government. I guess I don't speak, either.

Speaking of paperwork, what happened to all papers from Stanford? It's like they were completely erased. My AVM then just magically disappeared. That's a miracle!

The real miracle comes in the form of my memory. That should all be gone, right? Also, why did my higher education and employment history prepare me for this ordeal?

Manmade Miracle

 

My AVM that bled was in my cerebellum next to my pons. I remember hearing that anyway. You can forget seeing anything at that time back in the hospital. My eyes are better now. I can see big things in the next room. In the beginning after the stroke I was blind. At the rehab, they patched my right eye,

I had to have heard this at the rehab. They are the only ones who mentioned the pons.

Now we are talking pontine bleed. That's classic Locked-In Syndrome.

You might have to enlarge to read.

My AVM bled primarily in my cerebellum, then the whole brain. Now thinking way back to when I was in college, the cerebellum controls heart rate and breathing. I stopped breathing at a clinic. Records say that I was resuscitated at the trauma center.

I died at that hospital. Read the record.

Something had to have happened because I am alive and writing this. This characteristic about me is two part. First there is alive.  I believe writing is due to a second surgery, but the skill could not be seen right away. So much time has passed that the skill is attributed to miracle.

My heart stopped at the trauma center. They knew it was going to stop, so they did something to buy some time. They chilled me. I was close to frozen. I had to be a bit of a sleuth to figure this out. The records state that I was treated for hypothermia. My mother described that an apparatus was put over me to control my temperature. They did Whole Body Cooling! It worked.

I didn't drown. I did have a minor car accident, but I never went into the river next to me. It was snowing where I was. 

Freezing my body was at the hospital. They didn't freeze all the way, but my heart stopped.

https://thoughtfulveg.blogspot.com/2021/01/just-chill-therapeutic-hypothermia.html

Some will not see a connection of now to a surgery done years ago. It was brain surgery, though, and outcomes take a long time. Yes, everyone saw the immediate result, the removal of impending death. The AVM was removed but no one saw what grew there to take its place. I haven't even seen. I can only go by outward behavior...and that looks very good!

So dear US government, I am not vegetative and I am not about to die. The AVM was removed back in 2004 at Stanford. Nothing is there to bleed, now. You would know this if you read the records. You would know this if you didn't delete the records.

One more thing dear government, DO NOT SCHEDULE ANOTHER SWALLOW STUDY AND CUT OFF MY FORMULA. That last time was a fiasco. The formula is my only source of nutrition. Are you trying to kill me? This is written, not verbal, and there is no need to swallow. You never gave me Speech Therapy. Why would I swallow?

l

My Cerebellum Was Fixed

 

It's not amazing that I type. I have 1 good arm n a piece 

of brain was missed. That piece was missed n I now talk. 

@Stanford_Neuro

The cerebellum rewired n now I talk?

https://twitter.com/angelar70/status/1324058519629258753                

Here it is 16 years after surgery, and I think my cerebellum is still rewiring.

What does the cerebellum do?

The cerebellum receives information from the sensory systems, the spinal cord, and other parts of the brain and then regulates motor movements. The cerebellum coordinates voluntary movements such as posture, balance, coordination, and speech, resulting in smooth and balanced muscular activity.

Cerebellum Function, Anatomy & Definition | Body Maps

Stanford restructured my cerebellum. The AVM that bled and caused all this damage was there. They removed it. That wasn't easy. I had to go in a few times just to shrink it.

When the AVM was shrunk to operable size, it was removed. Stanford also took out scar tissue and cleaned up the area. I bet age related damage was also removed, as this is seen in my appearance. I will assume this is temporary since I keep aging.

So Stanford restructured my cerebellum. It looked good. They didn't know if they had fixed it. That would take time. The brain would have to grow.

Growing My Brain

"What happens is that there is an injury to one part of the brain—most often the left hemisphere. And there is what I called a recruitment of still-intact brain tissue elsewhere. The brain seeks to correct the imbalance and will find an undamaged area, most often in the right hemisphere. There is then rewiring to that new area..."  https://www.vice.com/en/article/bn5qew/whats-new-in-the-field-of-savant-syndrome-research-611

An area of my brain was out-right missed when I got the brain injury.

This will get some people.  The area of my brain wasn't available at the time of my injury.

The area my brain rewired to was my cerebellum. This area first had to have the anomaly, the AVM, removed, and it had to be cleaned and repaired before it could receive anything. 

Once that was done, it would have to grow. The human brain takes years. Rewiring happens during this time. I may be rewiring right now.

 

I didn't know the cerebellum did speech until I looked it up. Watching the above video, it reveals the cerebellum is involved in higher processes. How could I come up with a concept of missing information in time?

We will see as I get older. I believe my brain is still growing. I have at least 25 years from the date of surgery for brain growth (if development stops at age 25). Any time thereafter is unknown. (Calculation is another high process.)

The high processes will also be seen.

 

As for my high IQ thing, it was there before the brain injury. This writing is my second explosion of creativity. Piano was my first. My cerebellum rebooting is entangled, so they go together. Whatever you get will be enhanced.

I'll Say Congenital

Most know that I had a devastating  stroke, but I now write.  I can do other typical, and not so typical, things after the stroke. The things are amazing. What I am about to write is amazing. A person might say Savant Syndrome is involved. That disorder was never confirmed in diagnostic manuals.

My current diagnosis is "Semi-Vegetative." Vegetative is basically a coma, but the eyes are open. In my case, "Semi" was added when I started saying words. So, I am writing to you while I am in a coma.


Writing while being in a coma is amazing! Someone goofed long ago. I say long ago because the disorder Savant Syndrome was proposed long ago. It wasn't approved. A person with a disability could do something way beyond skill level. Now medicine is better. Something as menial as writing is astonishing when performed by someone "saved."

I once was in a full coma. That was years  ago. I was slow to open my eyes. That warranted the word 'vegetative.' Speaking, as I do now, does not.

I, and others, have disagreed with the government's diagnosis. I am in a pseudo-coma by their standards (which is currently not swallowing barium). Locked-In Syndrome is the appropriate name. My speech continues to be about simpler things, and writing contains more complicated ideas. I have noticed some change on video, so this is coming.

Writing occurs after a stroke, which can lead one to believe Savant Syndrome, Acquired.

You can acquire Savant Syndrome from a brain injury or CNS incident. I had a stroke and a car accident. This is the acquired form. There is another form. Some are born with Savant Syndrome. In this case the disorder is congenital.

I had my mother describe to me my early development. "...you had a foot that was more dominant and one foot that turned and dragged. You had to have a special shoe." It goes on. "Also your eyes didn't focus well and one eye drifted. You also used to bang your head on the wall purposely," Myra Metz.

That's a special needs child being described. There was a previous brain bleed. I hold a degree in Early Childhood Special Education. I ran a home-visiting program just for this type of baby. Identifying the special needs child is second nature.

_____________________

Growing up, I'd hear the horror stories of my birth.

My mother died during labor and had an out of body experience. Forceps had to be used to pull me out. If you never heard of these things, they were these giant salad tong things invented to grab and pull a baby out of the birth canal. These things aren't widely used anymore. There were too many complications. My mother now suspects these things in creating the AVM anomaly in my head that bled 32 years later.

"You were born much too early." I am almost 50 and still hearing about it. "You were induced."

Then it clicked. That description of my early childhood was of a baby that had a CNS incident. I was induced, most likely due to fetal distress. Doctors didn't tell patients crap back then. Of course it was a horror story. 

If those forceps had caused the AVM in my head, there also would have been gore and I wouldn't be here to hear the story. Forceps would have had to squash my head nearly flat to create an AVM that deep. Sorry Mom, but the AVM was already there. They are congenital. It would also be the cause of your pain. Bleeding caused fetal distress and set off your whole cataclysm of events.

Everything resolved nicely. I went on to play piano, and then excelled academically. Now I had a stroke and am writing in a coma. This last sentence doesn't sound right. Maybe Savant Syndrome should have been made a disorder.

A Resilient Child Grows To Have Grit

My mother, Myra P Metz was a major contributor to this.

 - Angela 

Back in 2004, after the craniotomy at Stanford, the neurosurgeon told me to now expect my usual brain development. Big smiles from me. I knew it wasn't usual. My  mother can tell you about my development. I'll just let you know I remember giving instructions on how to get home from my car seat.

"...you had a foot that was more dominant and one foot that turned and dragged. You had to have a special shoe." It goes on. "Also your eyes didn't focus well and one eye drifted. You also used to bang your head on the wall purposely which is kind of autistic-like."

"You were very early with using language and making the connection for abstract symbols and language. Your memory was like photo imagery."

"One thing you had very little of was patience.  You were always obsessed with how things worked and you used to dismantle things in the house to see how they worked. I think you were the one who took apart the window crank opener when you were two by climbing up on the dresser."

I remembered taking things apart.

I loved this show as a kid. He'd use parts of things.

I had a pink transistor radio like in the image. I would regularly take it apart.

When I was 18 I got an old car, a '68 Chrysler convertible. This thing was huge! You could probably seat a family of 5 in the front seat alone, although there were only three seatbelts. I'd take this thing apart and put it back together. I can rebuild a carburetor, but that's a lost skill now.

"There was another thing I just remembered from your early development. You never crawled." I'll have to check on  this issue, but never thought about affects.

"Most babies go through that stage where they get up on their knees and propel their torsos back and forth, but you never did that. You would lay on your tummy and it looked like you were swimming but never got anywhere. To get someplace you would roll your body. Then you would pull yourself up once you got to a spot where you could hold onto something. You took off walking at 12 months, but you never went through a crawling stage which I understand is very important in the development of other body and brain functions."

From what I remember, crawling is important for reading. I was an early reader. I must have got the skill to read across the page elsewhere. I'm thinking music gave me this skill. I could read music first. It's okay to get skills elsewhere.

 ________________________

The description of the child sounds like brain compromise. Knowing I had that AVM, it probably bled in early childhood. Here is the first brain injury.

I did very well. I did extremely well! I started playing piano! I was a resilient child.

My Talent
(click)

I Was In Star Wars

I didn't receive a thing from the government. They say I'm in a coma. Vegetative is an open eye coma. People in comas don't get anything. This includes any rehab. You don't have to wake them. You don't have to do anything. By the light in their eyes, I am in a coma on their records. I've gotten nothing.
 

I got some rehab before I switched from private insurance to the government. I had insurance with my job. Now I have Medicare and get absolutely nothing.
 

I do not have a neurologist. My last "neuro" would have been in 2004 at Stanford when I had brain surgery. The government never accepted that surgery happened. Talk about an elephant in the room that nobody sees.... Where was I for a few days? My AVM disappeared by magic.

________________________________

I am allowed to have a primary care doctor which is close to my home. I have a GI Specialist for my G-Tube. I use my Medicare retirement for this. I do not receive assistance for this. The assistance I do get is in a form of a caregiver. She is paid through a state program which also receives federal Medicaid funding.

 
Before people get mad, you have to know about my diagnosis. Then you can get really mad, or stare and blink at your computer screen. It's hard to know what to do. I say make me conscious, THEN figure it out.

I had a bleeding stroke, a hemorrhage, not a clot, which is always warned about. The bleeding was stopped, and I was left with a big "blood balloon" in my head. If it burst, I'd really be dead. I was also left in a coma. (My diagnosis is semi-vegetative. Vegetative is an open eye coma. Vegetative is very close to death.) I opened my eyes five weeks later after the bleeding stopped. I did not talk, and the type of coma was made vegetative. 

Vegetative is a coma. People don't realize  this because the eyes are open. "Semi" was later added to my diagnosis when I started talking. (No one has ever made the jump before from the PVS, Persistent Vegetative State, to being conscious. To remove the word VEGETATIVE would mean I have done this. For those of you now staring at your screen, you can call your TV station if you want.) Now that I write I can't think of another word to add.

________________________________

Doctors hadn't seen this situation before. The giant blood balloon, an AVM, usually bursts and kills the person. Once in a while, they are found while doing something else. If a person does survive a brain bleed, they are usually left with problems. This one "leaked" which gave it away. It then should have burst a while later, which is why the government is surprised I am still alive.
 

Now if that surgery I had back in 2004 had been accepted, I'd have none of the problems I have now. Stanford removed that AVM. It wasn't one simple surgery. I had to go in a few times before a craniotomy was done, just to shrink that giant blood blister. The balloon had to be deflated before it could be taken out.

 Going to Stanford was stepping into the future.

I was in Star Wars!

This video I included was 5 years after my procedure. This is a more refined process of what I had done to me, but it is still futuristic. I still have a hand crank at the foot of my bed to make it go up and down. (I have a different control to make my head go up. I use this other one all the time.) The whole bed going up and down could save a caregiver's back. The government takes care of its employees! I say this dripping with sarcasm. I personally know of one use where in the hospital the bed was inverted with me in it for postural drainage. Postural drainage is probably done with pillows at home. Again, that poor caregiver.

________________________________ 

My embolisms, the procedures done to shrink that giant blood blister, the AVM, were all done as out-patient procedures. Did they count as "key-hole surgeries"? An incision was made in my leg, and a camera was snaked up my blood vessels to my brain.

 

Snaking a camera up an incision in my leg.... 

I saw this long ago!

________________________________

After the AVM was removed, I spent more time in a government program that refused to accept that Stanford actually did anything. I don't understand this, as they, the government program, were the ones who removed stitches from Stanford's procedure. Slowly get better is something that has been going on since 2004. 

________________________________ 

That "leak" was a major brain bleed. There shouldn't have been much recovery from it...unless the brain is plastic. Then terms like neurogenesis and neuroplasticity have to be used. 
 
I no longer require a ventilator. That's rewiring, or neuroplasticity. The return of speech is probably a combination of both. This writing as a theme of my life, though, I've never done that before. Writing would be neurogenesis.

What happens is that there is an injury to one part of the brain—most often the left hemisphere. And there is what I called a recruitment of still-intact brain tissue elsewhere. The brain seeks to correct the imbalance and will find an undamaged area, most often in the right hemisphere. There is then rewiring to that new area, and then there is the release of dormant potential, which can be at sometimes an astronomical level. So it's the three R's: recruitment of still-intact tissue, rewiring, and the release of whatever capacity is there. https://www.vice.com/en_us/article/bn5qew/whats-new-in-the-field-of-savant-syndrome-research-611

Rewiring is neuroplasticity. This most likely happened. My lobes were dead, all of them. I only had brainstem. Breathing is a brainstem function, and rewiring could occur there.

Speaking is more complicated. I believe areas of my brain in those dead lobes were still alive. It's easy to miss that sort of thing by visually looking. A scan was never taken. The AVM was visually seen. (I initially had emergency brain surgery to stop the hemorrhaging, the "leaking." Before surgery, doctors didn't know why I was bleeding. They saw the AVM when my skull was opened.)

Writing as an avocation is new. I did not write as a main pursuit before. I knew how. All of that was taught in grammar school. Neurogenesis accounts for this new skill.

A scan wasn't performed until Stanford did surgery. They would have been more appropriate to determine a diagnosis.

________________________________

More Star Wars and less hand cranks are needed for progress. The environment of caveman living produces caveman thinking. If people are saying and doing stupid caveman things, well, they are just products of their environment. Provide a rich, Star Wars environment, and you will get smart, cutting-edge thinking. It challenges the mind.

A little bit of Star Wars is needed at home.
If people live in it, they will work on  it.
________________________________
  

Now in honor of that Magic School Bus episode I give this song. It's been in my head since I found that episode.

UPDATED 6/1/2018

What Do You Do?

https://www.quora.com/What-is-it-that-you-do-for-a-living/answer/Angela-Ronson

I had a retirement plan. It was like a 401K, but the IRS equivalent for a non-profit. It's known as a 403B. I was 32. I thought I wouldn't need it yet.

With all the daringness of a young person, I left my job and cashed out that 403B. I already had a job lined up. I'd be paying into a different system. I still had my Social Security, but I knew it only gave a bare minimum. I wasn't completely working without a safety net.

I had a stroke. It wasn't the regular kind and there wasn't any warning. I was healthy and not over-weight. I didn't smoke and seldom drank alcohol. I had low blood pressure!

What happened is that I was born with a tangle of blood vessels in my head called an AVM. That stands for arteriovenous malformation. An artery ends up directly going into a vein without capillaries. Blood pressure is higher in arteries. The artery vessels are made to take it. Veins can't. AVMs usually burst, probably due to this blood pressure situation. AVMs rarely occur and are usually detected after they bleed. There are no preventative measures.

I never knew I had this thing. What happened to me can be viewed as a freak accident. They are very rare. It was a stroke, but the circumstances were strange.

Since I write, I should at least be minimally conscious, if not fully conscious. The system wasn't set up to deal with this issue. I say it is a communication disability. The problems experienced are consistent with discrimination of a disability. I did not speak at time of testing. I speak now. Right now I don't swallow. Give me time. I'll eventually do it, but that's not for a living. I most likely will remain not conscious unless I am evaluated in person. My paperwork does not look like me. Right now I don't do anything for a living.

Similarity

Angela Ronson "experienced a rare form of stroke [15] years ago [12/16/2002] while working as a [behavior specialist at mental health]. A congenital malformation of the blood vessels in her brain" leaked. I took the beginning of this article and changed it a bit (just date and job). http://newsinfo.iu.edu/web/page/normal/4481.html

I had the same type of stroke as Jill Bolte Taylor. It's called an AVM Stroke. Mine was more severe. While she was awake and able to experience it, I was not. I lost consciousness and had stopped breathing. My body was put on a respirator. I cannot recount what happened, other than to go through medical records.

There were other similarities. We both studied the brain, but different aspects. I dealt with behavior and knowledge. Even if something was missing, I felt that a skill could still be learned. She knew anatomy really well. That's the big difference between mental and physical health.

We had hemorrhagic strokes. That is a bit different from the type that is taught on TV and other media. A blood vessel bleeds. The familiar stroke is caused by a clogged artery.

 
I actually died, my heart stopped. That's just on top of what she says here,

Similarity most likely ends there. We are different people.

 

____________________________

The AVM in my head bled in 2002 and is called an AVM Stroke. The AVM was removed in an experimental surgery at Stanford University. It had grown back to pre-bleed size. The bleed in 2002 was catastrophic. It killed all brain lobes and left only the brainstem needed to keep the body alive.
 

I'm 15 years out from a stroke now. I wrote this. Did something happen and I now have brain (more than just brainstem)? Or am I just magic?

You Missed It

The real miracle happened years ago. What is amazing now is just my natural brain growth. I'm used to the dropped jaw and wide eyes. I was a top-scoring poindexter, but I had friends. I was like other kids, but very smart. When high school came along, I dropped out...but started college. (I passed a test.) I wasn't really the typical kid. I looked like one, but I was extremely smart.

_____________________________

If I had been properly diagnosed in the first place, I wouldn't now be explaining this to you. I don't see fault with the person who gave me the diagnosis. Rather it's the system. If consciousness was put on a sliding scale this error never would have happened. (I would have been 0 at that time. Now I would be 10. You missed 1-9.) I would have slid from 0-10, much like turning up the volume on your stereo. My consciousness now screams at you. I was diagnosed before it was a whisper.

_____________________________

I go on...there was a miracle. My AVM (arteriovenus malformation) is gone and I am alive. I used to joke that my AVM was in a jar at Stanford. A biologist pointed out that it can't be because it is not tissue. An AVM is mostly all blood. It is a tangle of blood vessels with no capillaries. The pressure can cause a blood vessel to swell. I had a blood balloon in my head that leaked and got me in this predicament.

_____________________________

When it "leaked", most people would have died. It wasn't a small leak. It was a full-on, major brain bleed for me. The AVM only got smaller and retained all its properties. Bleeding was stopped and it was left there. It could still do its job.

A surgeon at Stanford University Hospital thought he could do differently.

This gives you an idea. This following video is after my surgery. My initial procedures were also one day. The woman in this video had her  procedure done in one day. The initial embolizations I received were done as out-patient procedures.

I would have a few of these procedures to shrink my AVM to a manageable size. The AVM could then be surgically removed in a typical craniotomy. So that is what I did.

____________________________

It came with risks. I had to sign my life away. For all I know, the machine in that video was tested on me. I doubt it, though. Like I said, my case was a predecessor. It happened BEFORE. "Cyberknife" did not exist, yet. The video states this is the latest model of that video's time. Mine would have been more crude, but sci-fi none the less.

The government wanted nothing to do with this procedure. I had to be seen through the clinic as an indigent in need. When I went to Stanford for the final craniotomy I was a resident at one facility, and when I woke I was a resident at another facility. Medicaid actually transferred me during a procedure.

The surgery has been successful. I am still alive. This is the miracle.

So, ask the government to explain why I am alive. They are not responsible and should take no credit for that. Ask them what happened to my AVM. I'll say it's at Stanford.

What you see happening now is  my normal brain growth. That has stunned people before. I got used to that way back as a child. You need to get used to that, also.