6 on 6

Today, March 6, 2020 marks 6 years since I survived multiple brain injuries during a shunt revision on 3/6/14.  Today is my golden brain birthday - six years on the 6th day of March.  I had two shunt revision surgeries during 2014.  The second was when the rest of my shunt was finally repaired in May 2014.

After my brain injuries on 3/6/14.

Overall, I had a great brain birthday today. I had no chronic or shunt pain issues. The whole day and into the evening.

During the day today, I tried a Virtual Reality simulation at my local mall. I was on a swing somewhere in Asia. Very cool experience there were times when I got a little dizzy going up high into the air.

During the holidays in December 2019. 

6 Years surviving multiple brain injuries.

I also enjoyed some arcade games today. Finally, I made some new characters at the lego store and then returned home and enjoyed my cupcake. I didn't use a number candle this year, just because of last year's experience.

Blowing out my candle today made me hope to have more pain free days and of course, no more shunt revisions....I made a film about my brain injuries in 2014.

109

I had five pain free days earlier this week. Kind of a small miracle, which should always be celebrated. Then about two days ago, all the shunt drama returned.  Shunt valve pain with dizziness, distal catheter pain, nausea ,pain in my right eye and scalp sensitivity where my shunt is located.  Last night, my balance was really off, I had walking issues and I was bumping into things.

I've read in the news that soldiers in Iran suffered traumatic brain injuries as a result of an Iran Strike recently. The article can be reach here: 109 troops suffered brain injuries

I just hope these troops are getting the appropriate services they need to assist them in their recovery.

Symptoms of brain injury often never really ever go away completely.... A fellow survivor told me once, that recovery is a marathon and not a sprint.

In the meantime, I've re discovered word search puzzles, which I use to pass time when I'm not out saving the world through volunteering or drawing.

Grumpy with a side of tea

I've had shunt and forehead pain with a side nausea and right eye pain consistently for over a week now. The eye pain ( strabismus surgery eye ) happens at the same time as shunt and distal catheter pain. My shunt is probably adjusting itself or just being an unruly medical device or both. I've also had scalp sensitivity where my shunt is and am more aware of this when I comb my hair.

Either way, it's made me grumpy and I've been staying indoors when I don't have anywhere I need to be. Pain reliever's haven't been working.

I don't think the settings are have changed. Although, I wouldn't have anyway to check this because...

1. My neurologist doesn't know how to check my shunt's settings
2. The last neurosurgeon I saw in 2018, didn't know how to do this either. Because...

Apparently the shunt I was given isn't used anywhere nearby.

And this is just so helpful...

I can't go back to my ex neurosurgeon (who placed this shunt) because I fired him and he got animated into one of my films...

All I can do is wait for this to go away.

And there's always a little time for a tea...

And then the neuro ophthalmologist said..

Today dizziness is somewhat better than the shunt pain madness of last few weeks because..

Last weekend, my shunt was causing some nausea, dizziness, valve pain and balance issues. This happened in the evening and made me nervous, as I had fears the device would fail on me again. The following day, I only had some nausea, shunt pain was gone and I realized my shunt was adjusting itself or just driving me a little insane....because I do believe my medical device is vindictive sometimes.

The good news is, when it was very windy earlier this week and it didn't bother my shunt. Usually when it's windy outside, every gust of wind caused shunt pain.

Yesterday, the coldness outside made my scalp sensitive. It hurt to touch the top of my head where my shunt is inside my skull.

About a week ago, the shunt pain felt like a needle had been pushed down into my skull.

I haven't had shunt failure in five years.

I saw the neuro opthalmologist who repaired my right eye in 2015 after my brain injuries. He told me my eye is doing well. I asked him about the pain behind my right eye. I've had this pain since my injuries in 2015. He said it could be either one of the following, or both:

1. Dry eye - Which can be alleviated by dry eye drops
2. A result of the injuries I had in 2015.

I do notice that when I have throbbing and pain from my shunt, I also have pain behind my right eye. I was told to ask my neurologist about the pain to see if it's related to my injuries.

So we'll see.  For now, I'm going to enjoy being pain free with occasional dizziness.

Waves of communication

Grocery store robot moving in store

Last week and parts of this week, the pain medication I usually use for my chronic head, neck and abdominal pain didn't work.  I did my usual activities of volunteering last only to return home and try to forget the pain.

At times this didn't work very well, although I managed. I was grumpy, yet I managed.

I colored and sketched a plastic pumpkin. It was out of proportion.

Now it has googly eyes

This morning, I had pain issues again in my head and I took curamin for the pain. So far, it's been working the entire day.

Not sure what was happening over the last week.

Maybe it was the weather transition of Summer to Fall...

As I may have mentioned in a previous post about the Stop and Shop robot....

When I am in the grocery store, I run away from the robot which is suppose to alert the management about spills and maybe shoplifting?

It's too bad my programmable shunt valve ( and it's super advanced technology, sarcasm ) doesn't allow me to communicate with this robot electromagnetic waves or something.

3

I had three days this week of bliss without cerebral shunt or chronic pain. A huge improvement from the last few months. Yesterday, this changed, as the shunt began to rebel again.  Today, some of the same pains from before have returned like shunt pain, distal catheter in abdomen pain and dizziness when I move my head from side to side.

New Medical Fashion....

The good news is I received my medical ID bracelet in the mail. I've had a shunt since early childhood and it never occurred to me before to wear one indicating I have a cerebral shunt.

I would think all doctors should suggest to their patients who have internal medical devices to wear something which would indicate they have an internal device. Some do and others don't.

I already have a medical card I carry with me that has my medical, doctor and emergency contact information.

How would an EMT know to check my bag for this information? Like for example in the event of an emergency, if I'm unconscious for whatever reason (accidents, fainting or squirrel attack ) At least someone will know where to find information and contact my doctors and family.

Summer Flower Fun

Outside with flowers and a cool building. 

Yesterday was better in terms of head/shunt pain issues. Last Saturday specifically was the worst day in a long time, four hours of pain until it finally went away in the afternoon. My medical device gets temperamental depending on the weather and phases of the moon. I was fortunate enough earlier this month to go exploring with a friend and encountered several flowers and architecture.

It's been a while since I completed a book and earlier this month, I finished working on one.  A short post about it can be found here.

6/1/19 - I don't know what it is about Saturdays. Last Saturday was a bad shunt and head pain day. Today is also Saturday and it's another bad chronic pain day. I tried again to take medication in the afternoon, and not much of an improvement even after 6pm. Continuous eye and shunt pain both at the same time.

6/2/19 - Shunt, eye and distal catheter pain in stomach at various time during the night, especially early in the morning like around 2am.  I could go on a profanity laced post about my shunt, I'm not going to though. I have a better idea about expressing my extreme frustration with my medical device.

More on that later...

And then the doctor said...

My neurologist said my shunt is working. I had concerns about it misbehaving for three weeks and had inquired about having CT and or a shunt series done. She had told me this wasn't needed unless it was absolutely necessary. Unless my shunt is obstructed and I'm incapacitated and vomiting on the floor, then a CT scan and shunt series is needed for obvious reasons. Otherwise, I wasn't getting one.

I had an epiphany while visiting my neurologist.

I realized the reason (besides the one mentioned above) scans aren't necessary right now is because these doctors know my shunt is working and it's on the correct side of my brain. I've come to this conclusion because with my former neurosurgeon (we'll call Dr. X) who I fired and animated in one of my films...Prior to my injuries in 2014, I was having a MRI every six months.

I'm surprised I didn't glow pink from all of the scans...

Dr. X, I believe was ordering the tests because he knew my shunt was in the wrong way and why he was monitoring it so closely. Now that my shunt's been returned to the correct location, there's no need to be 'zapped' so frequently. The medical professionals around me know what happened to me in 2014 and why. They also realize my medical device is working as it should be.

My neurologist did note during my appointment there is weakness on one side of my body. Something she hadn't seen since I started seeing her in 2015.  For the next six months, I'll have physical therapy until I see her again in October.

She was happy to hear my shunt and head pain had stopped for the first time in three weeks. I'm also convinced these doctors know programmable shunt valves are temperamental and react to just about everything between the weather, stress, other magnets and various amounts of csf fluid.

The shunt and scalp pain has been minimal this week. Not sure yet when the top left corner of my scalp throbbing will go away yet. Sometimes it's there and sometimes it isn't....so we'll see.

My medical device can be as temperamental as it wants as long as it means I don't have to have surgery again.