Wednesday, January 24, 2024

10 years later, part 1

I woke up this morning with the theme from Teenage Mutant Ninja Turtles: Turtles in Time (SNES) in my head. I didn't have much luck playing Mega Man X due to chronic pain issues. I was more successful with Super Mario Bro 2. I got a lot of satisfaction with throwing vegetables at various characters...

This year, 2024 marks ten years since I survived multiple brain injuries while having a shunt revision surgery in March 2014. The shunt drama began in April 2009, a month before I was suppose to finish my first graduate degree in May 2009. A late friend of my mine would refer to this as Murphy's Law.  On April 7, 2009 my shunt became obstructed and stopped working. I went  to the hospital for emergency surgery.  

 I'm just one of many people who has a shunt in my brain and has a chronic illness. 

When I was in the hospital in April 2009, I was taken to the operating room for surgery. During the surgery, my shunt was put in backwards. I suspect this was because the x ray was in the wrong way and no one checked this. 

The reason I believe my x ray was in backwards during the surgery was because of what the surgeon wrote in the operative report:

 The patient's right side of the head was shaved and left side as well and the right side of the neck was shaved and then prepped.  There were two scalp incisions, 1 on the right side, 1 on the left side and the bur hole had been placed in the left side. Both incisions were opened and the shunt system was identified.

 

(LEFT) X Ray image of my shunt placement birth to 2009.

Upon waking up after the surgery, I felt my lungs burning as I had stopped breathing. I could still feel the intubation tube in my throat, as they had used an large size.

I'm a petite person, I need small intubation tubes. 

Before I've had any shunt revision surgery, the anesthesiologist is suppose to check you before you go in for surgery to make sure they know what size tube to use. 

No one saw me before the surgery. 

After surgery, I couldn't breathe because I could still feel the tube in my throat and struggled to get air into my lungs. After what seemed like a very long time, I finally was able to breathe on my own with assistance from a nurse. 


 ( LEFT ) incorrect shunt placement X Ray image (2009-2014)

The surgeon who performed the surgery never saw or spoke to me again. 

 I was never given antibiotics after surgery and developed an infection.

Upon coming back for a follow up appointment, I saw an assistant who gave me medication for the infection.

I developed a chiari malformation type 1 by my cerebellum after this surgery. I suspect because my brain almost herniated after this surgery. 

I now get headaches in the back of my head. If I lay on my back, putting pressure on the back of my head, I will have headache pain on the top my head ( both left and right ) among other issues....

Since this doctor had refused to see me, I changed hospitals and found another doctor.

And that was only the beginning...


 


Saturday, November 4, 2023

Mermaids and the some

No chronic pain issues this week. Today is mild. 

In October I experience a variety of the following:

A day when head and shunt pain didn't go away for three hours, without medication. I had the usual pain behind both eyes.  I try not to take pain reliever unless I really need to. 

Taking regular over the counter pain reliever usually reduces the pain I feel in my head and neck. It doesn't always eliminate it completely. 

Individuals and families with an unruly medical device and chronic illness have a variety of symptoms. I'm just one of many people.  

Today, I enjoyed returning to Nintendo Therapy which included Super Mario World (SNES) and The Little Mermaid (NES)  I was able to focus for like one hour despite having some head pain. 

Let's not forget other coping mechanisms like Music by Joe Hisaishi and reading...




Saturday, September 9, 2023

in the summer

September is hydrocephalus awareness month.  During the summer, I attended a Pediatric Hydrocephalus Conference. It was great meeting other individuals and families who are living with hydrocephalus.   Always nice to talk with others who truly understand what it's like to live with this chronic illness. 

It was 10 years ago this month that I started making a short film about my shunt as it was doing some weird things inside my head. At the time, I didn't' know it was on the wrong side of my brain. I later figured this out on my own in March 2014

Whenever I talk about my brain injuries with anyone, I always emphasize how you have to listen to your gut, as it doesn't lie to you. Had I not listened to my body back in 2013 when I felt vibrations inside my head and on my spine, I would not be here. Had I not advocated for myself and insisted my neurosurgeon do surgery, I would not be here.  I later fired this doctor ( since he wasn't taking my complaints seriously ) and he got animated in my film. I always tell people if you can't advocate for yourself, then get someone else to do this on your behalf.

Like any brain injury survivor, you're just never the same afterwards. I've been having walking issues again and I'm back in physical therapy.  With chronic pain issues in my head and leg this week, I found myself again listening to movie soundtracks such as Treasure Planet (2002)Blue Beetle (2023) and Sailor Stars (1997)


Sunday, August 13, 2023

11:30PM

Sometimes around 11:30pm last night, I was awakened by a severe thunderstorm outside. I also had pain from:

1. The chiari malformation in the back of my head.

2. Nausea from distal cathether in stomach.

3.  Pain behind both eyes 

4. Pain from the shunt valve and distal catheter at the top of my head. 

It's been like four hours and the pain has been reduced, still lingering in the background. I'm doing this new thing where I don't take pain medication unless I really really need to.  

Not sure if I'll do nintendo therapy today, as I have pain behind my eyes.  It may be a reading and listening to movie soundtracks type of day.  Music from films like Suzume and Spider Man are in my head today.


Friday, June 30, 2023

Two weeks and water from the sky

 Since it's been raining in my area. I know I'm not the only one who experiences chronic pain issues with the changes in barometric pressure and the weather.

This week:

Pain behind right eye with needle like pain in both eyes. The feeling of having a needle being pushed inside your eye all the way into the my eye socket. 

Pain on the shunt valve with nausea from distal catheter.

Headache pain from the Chiari malformation  in the back of my head.   

Some walking issues with my left leg.

As a distraction from the chronic pain issues this week, I enjoyed reading and  of course, Zelda.

Sunday, May 7, 2023

Several Days

For a week and a half or what feels like longer.  I've experienced:

Pain behind both eyes.

Pain from shunt valve and distal catheter followed by nausea

Dizziness

Ringing in my right ear

Pain on top of scalp both left and right sides.

Today (5/7) I am feeling better.

Lately, in order to distract myself, I've starting reading various books such as Bunniculamanga and anything else I can find.

And of course, the Reading Rainbow theme song has been in my head....

May is Stroke Awareness month.


Tuesday, April 11, 2023

Super Super

 The last few days have been pain free. 

Then there was today.

Sometime this afternoon I began feeling the following:

Headache pain the back of my head (from Chiari Malformation)

Nausea from my shunt adjusting itself....

Pressure and pain the forehead

Pain behind both of my eyes.

Pain on both sides of my head. 

Pain on the shunt valve and along the distal catheter down the back of my head and into some of my neck.

I took two different pain medications about a hour apart from each other starting around 12pm and then again at 2pm. 

Three hours later, I still have head pain. 

I attempted Nintendo therapy with Super Mario World (SNES) and was not very successful. Let's just say lots of game overs....I felt compelled to play of course after seeing the film recently.

Maybe it's because the weather is warmer now, satellites, drones, the moon.... whatever else is in the atmosphere that effects these programmable shunt valves many people ( of various ages ) have to deal with....