11 years and a Blue Octopus

 This week marks eleven years since surviving multiple brain injuries in March 2014. I needed two surgeries to fix my shunt. The incompetent neurosurgeon at the time didn't listen to me when I told him I needed the entire shunt repaired the first time. I had a 2nd shunt revision surgery in May 2014. 

I am both grumpy and grateful. Grumpy like the blue octopus on the right. Like many people living with a chronic illness and chronic pain most of the time...It reminds me of this scene from The Avengers (2012).

My incompetent neurosurgeon reported I only had a stroke. The resident doctor working with him in the Operating Room ("Dr. 2") reported I had multiple brain injuries. Now why would the surgeon only report I had one stroke? Denial is not a river...

Let's look at resident doctor's operative report from March 2014:

Patient is status post VP shunt revision with removal of the left frontal approach ventricular catheter and placement of right frontal approach ventricular catheter with the tip near the formen of monroe to the anterior third ventricle.

There is an expected postoperative pneurocephaly, Interaventricular air within the frontal horns of the lateral ventricle and subcutaneous emphysema within the right frontal scalp.

There is a focal hemorrhage in the region of the left thalmus measuring 7x10 mm at the site of the tip of the prior ventricular catheter.

Acute 5 mm intraparanchymal hemorrhage in the right paremedian pons has developed since 2/22/2014.

The size and configuration for the ventricular system is similar to the prior exam. No hydrocephalus. No depressed calvarial fractures. The visualized para-nasal sinuses and mastoid air cells are unremarkable. 

This critical result value was discussed with "Dr. 2" at 4:45pm on 3/6/2014 with feedback verification. 

Impression:

1. Shunt revision as described above.

2. Focal acute 10 mm hemorrhage in the left thalamic region with a component which may not be intraventricular or intraparaenchymal.

3. Focal acute 5 mm intraparanchymal hemorrhage in the right paramedian pons has developed since 2/22/2014.

"This critical result value was discussed with "Dr. 5" at 4:45PN on 3/6/2014 with readback verification.

Resident Radiologist. Attending Radiologist. Finalizing Radiologist. Transcribed date: 3/6/2014 14:32. Finalized Date: 3/6/2014 17:05. 

While in rehab in inpatient therapy, I learned I had more than one brain bleed while listening to a conversation between my physical therapist and the neuropsychologist. The physical therapist knew I had more than one bleed - My right leg would cross over the left leg. The neuropsychologist was confused by her comment as he said. 'She only had a stroke." (as reported by the incompetent neurosurgeon) Where she replied "No she didn't. She had more than one bleed. I can tell because of how her legs are moving."

When I got out of inpatient rehab and started outpatient therapy I ordered the reports.

In 2015, I made a film about this to spread awareness about hydrocephalus and brain injury. I was also angry about what happened. ( no reason, right?)

My film, Shunt Chronicles My Brain, Art and School (2015) turns 10 this year...

I am not famous, I am a starving artist with a chronic illness. Creating art, reading, and listening to music is just one of many to cope with chronic pain and past trauma. The good news is today, I feel better than I have been recently. That's all I'm saying for now.  My shunt is like an unruly child sometimes...

Like every year, I have a piece of cheesecake ( see right ) to celebrate surviving and not having any additional surgeries since then. This year, I've been shunt revision free for 11 years...

 

 

 

Strabismus!

Recently, I've been playing specific NES or SNES games just for the soundtrack. Like Castlevania II and Megaman X. Also, when I'm not feeling well, it's fun to play Mario 2 just because I can throw vegetables.  I've added board games to my list of things to do as coping mechanisms. The Simon game  is fun ( for short term memory ). The flashing lights on this game may make it not suitable for all people.

This year is 10 years since having strabismus surgery to correct my eyesight after my brain injuries in March 2014. After my injuries, my eyes were crossed and I had double vision for a year and twelve days. I couldn't have surgery to correct my eyesight until March 2015. This was because the surgeon needed to wait a year to see if there is any improvement on it's own before operating.

I was told before the surgery, there would be a chance the doctor couldn't get my eyesight back 100%. That there was also the possibility I would need additional surgeries through the years to maintain my eyesight. Since 2015, I haven't needed to anymore operations on my eye. I do get occasional double vision and my right eye (surgery eye) hasn't drifted to the right in a long time. I am grateful for this.

 I continue to have shunt, scalp and eye pain (needle like pain in eye) associated with both my injuries and unruly shunt.  After my strabismus surgery, the surgeon said to me: 'If your your eye drifts too far to the right and falls out, let us know. That means something is wrong.' Some may find this comment odd, I found it funny.

 

vitamins and then some

 I been prescribed a variety of medications from my neurologist for the chronic pain I have experienced from my injuries in 2014. Nothing worked in alleviating my head and shunt pain issues. I recently started taking an extra magnesium supplement when I have chronic head pain. The pain is from the injuries I had in 2014. In 2009, when my shunt was moved the 1st time - It caused a chiari malformation by my cerebellum. Since then, I get headaches in the back of my head. After my injuries in 2014, I have pain on the top of my scalp (both left and right side).

Taking an extra magnesium was recommended to me after a visit to a local vitamin store. This helps alleviate my the chronic pain in my head. However, it doesn't stop the shunt, distal catheter or occasional nausea.  The pain relief is temporary. I take the extra supplement when I need to.

At least this is an improvement. Magnesium and chronic pain article.

I asked my neurologist for a referral to see a neurosurgeon. I have questions I would like to ask the doctor. I also wanted to establish a relationship with the hospital and get a 2nd backup neurosurgeon. In 2009, I had surgery and my doctor wasn't available. I was given the next available doctor and my shunt was put on the wrong side of my brain. I almost died.

I haven't see a neurosurgeon since I fired the last one in 2014. 

Since it's October and almost Halloween, I decided to introduce my cat to The Twilight Zone. He falls asleep. It's a good distraction from my occasional shunt issues.

Fall again

People fall on sidewalks all the time.

Last week, I fell on a sidewalk. It wasn't from my balance or walking issues, the sidewalk was uneven. I landed on my side and bruised my knee and elbow.  

 It's gotten better since then.

I'm glad I didn't hit my head or break my glasses. 

The last time I made a crash landing on the floor, was in August 2023. I lost my balance, twirled and hit the floor again, on my right side. My glasses flew to my right on the floor unbroken.

I saw the ophthalmologist in June who corrected my eyesight in 2015. I still have occasional double vision. I still have pain behind my eyes from my injuries.

My shunt has been behaving itself until the weather gets warmer, it rains or the phases of the moon changes.

For some reason today, music from the film, Suzume have been on repeat inside my head.

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...

 

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.

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...