Tuesday, April 23, 2024

Sun, moon and a garden

 Before April's eclipse, I was concerned my shunt would have the same reaction it did during the eclipse in 2017.  I was pleasantly surprised this year. I had a some valve pain and shunt adjustment issues (nausea and pain from the catheter) the day before and a little during the morning of the eclipse. It wasn't as bad as the experience I had in 2017 where I felt like my head and shunt were being squished by gravity. 

Seeing the eclipse was exciting and a little bittersweet, as it made me think about my late cat, Stella (2000-2023). We  watched the eclipse in 2017 together. The fun part of the 2024 eclipse, I had a new friend ( left ) who I believe was trying to watching something out the window that day.

 Later during the week, I went with a friend to a flower garden (below right). Being outside was great even though it was very windy out that day. The wind bothered my shunt and I was still able to enjoy being outdoors.

For some reason today, songs from The Hunchback of Notre Dame (1996) are in my head...


Wednesday, March 6, 2024

10 years later, part II

This week, I had pain behind both eyes, nausea and pain along the distal catheter in my head and down my neck. My shunt is working, just making adjustments and my past injuries causing chronic pain... I had a good cry about this one afternoon. I don't speak for everyone who has an  unruly medical device and/or chronic pain - Sometimes you just have bad days and you cry a lot. That was me for one day last week.

Then I played Star Fox (1993) on Super Nintendo and it made me smile. I felt accomplished when I beat one of the levels. The end title music is wonderful.

 In 2009, after my shunt was moved to the left side of brain I changed doctors and saw another neurosurgeon who I thought would listen to me. We'll call him Dr. Potato ( Not to be confused with Dr. Potato head who is smarter than this physician)  In 2011, I had a shunt revision and Dr. Potato moved my shunt valve to the right side of my brain, leaving the distal catheter on the left side. 

In 2013, my shunt began to fall apart inside my body ( unknown to me ) except around November 2013, I started to not have an appetite due tot he distal catheter being broken in my stomach. I also started to have vibrations inside my head which would indicate part of the shunt is broken ( a medical emergency by the way ).

Again, this went ignored by Dr. Potato. Until I insisted on doing a shunt revision where my shunt stopped working during surgery and I had two strokes, a brain hemorrhage and and Traumatic Brain Injury. 

Like anyone who has experienced a traumatic event and/or living with a chronic illness... I still experience the following:

Survivor's Guilt

Chronic Pain 

Brain Damage

Like every brain anniversary, I enjoy something sweet. This year, I decided to be adventurous and had a slice of cheesecake.  I also treated myself to a new friend ( How I feel when I experience chronic pain). 

Additionally, I treated myself to a new game, which I've heard is a good memory game...

I made a film about my injuries. Again, I am just one of many people who has a cerebral shunt, chronic illness and has experienced a traumatic event.  My film can be viewed here.

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


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.