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.