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 Bunnicula,  manga and anything else I can find.

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

May is Stroke Awareness month.

Madness again....

 This week:

Each time I moved my head, I would have pain on the shunt valve because it was making adjustments each time I would move. The type of shunt I have is known to make adjustments constantly. I don't feel it all of the time except on days like this week.

Pain behind my both my eyes and sometimes behind just the right eye. I was told this was not from the surgery I had in 2015, that it was a result of the injuries I had in 2014.

Pressure and pain in my forehead.   

TMJ issues in my jaw and ear.

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

Right leg crossed over the left leg randomly as I turned - I almost fell,I was able to catch myself before landing on the floor. This happened while I was home.

Since I don't have to go anywhere for now it's time for exercise, watching cartoons and drawing.

That's the thing about resiliency, you just have to do things even if you don't feel well. People of all ages who have to deal with chronic pain and/or an unruly medical device like a cerebral shunt can relate to this.

Every time the weather changes my cerebral shunt decides what if feels like doing on that specific day.

I've tried a variety of natural and other types of pain reliever. 

Pain medication doesn't always work. 

There are people out there who might think we're making this up. Some will be dismissive because they are ignorant or they just don't want to feel your pain because it upsets them. 

In the meantime, while my shunt decides to be unruly I'm just find something to do as a healthy distraction. 

There's always time for Nintendo when you're home.

In May

 May is stroke awareness month. My shunt is behaving itself today, better than the last week with constant pain from the shunt valve and different parts of my head. No pain from the chiari malformation, or TMJ.  No pain behind my eyes and I haven't had any almost falling on my face incidents with my right leg crossing over my left leg. 

I'm going to enjoy this while it lasts.

For the month of May, I posted my brain injury film online. I'm just one of millions of people young and old who have had a brain injury and a cerebral shunt: Shunt Chronicles Film

Baromeric Pressure Madness?

 Today, I've had pain behind my eyes and on the shunt valve with a side of nausea from the distal catheter in my stomach. My shunt is making adjustments again, while responding to the barometric pressure changes, phases of the moon, satellites, weather and who knows what else is in the atmosphere. 

I know of other people who also have pain and other issues from the weather. It's nice to know there are many others out there who can relate to weather related pain issues. As the weather gets warmer, I just know my unruly shunt will rebel again. As long as it continues to work and I don't have to have surgery again.

That is all I want. 

To never have surgery again. 

 Pain behind my eyes again today (4/22) with a side of dizziness and pain the back of head. Most likely this is from the chiari malformation. The good news is, I'm not nauseous today from the distal catheter...

No Nintendo therapy today because of pain behind my right eye. So, instead I'm listening to music.

8th

 This week in March marks eight years since surviving multiple brain injuries and being shunt revision surgery free. I wrote about my injuries while in rehab.

I made a film about my injuries to spread awareness about brain injury hydrocephalus. I made a short film about my injuries: www.vjbrockett.com

Of course, as I do every year every brain anniversary, I enjoy a cupcake from Barnes and Noble cafe.

with pink hair

 The cold weather has been making my shunt and head hurt this weekend and last week during the ice storm. Today, there's been an improvement, the pain medication is working, there were a few days like last weekend when nothing was working on the pain. 

This week, when dealing with chronic pain, I turned two songs in Japanese from Sailor Moon S  and Sailor Moon Super S.

Also, this week I wrote to the board of neurosurgeons inquiring about what things were being done to prevent mistakes in the operating room and ways to monitor when a cerebral shunt will stop working.

I had used my experiences in 2009 and 2014 as examples of what needs to be improved. 

We'll see if and when I hear back from them.... 

March 6

On March 6 I had my anticipated shunt revision surgery.  In 2009, my shunt had been placed on the wrong side of my brain by a different doctor.  During the surgery (2014) my shunt stopped working because it had been on the wrong side for 5 years. The ventricular catheter was leaking csf fluid all over my brain. While the surgeon was replacing my shunt valve, I had a 10 millimeter intracranial brain hemorrhage on the left side of my brain. The bleed led to a hemorrhagic stroke by my brain stem which was followed by a traumatic brain injury.

When the catheter was returned to the right side of my brain, I had a 5 millimeter intraparenchymal
brain hemorrhage.

Correct placement of shunt 1982 to 2009

Incorrect shunt placement 2009-2014

 

Below: Correct shunt placement 2014 to present 

I woke up in the operating room with numbness in my throat, tongue and lips. I had partial numbness from the waist down and had could barely walk. My right eye was turned so far towards my left eye I could see the other eyeball.

Since last week it's been moving back to the right where it's suppose to be or at least trying to.  I have a wheelchair and I'm able to move myself around via feet.

I've had to re learn to walk, speak, swallow, stand and breathe. All of these things are difficult when you are trying to recover from multiple brain injuries. It can be very frustrating and exhausting. I continue to have pains in my abdomen and vibrations inside my head multiple times a day.

Since March 12 I've had OT, PT and ST each twice a day for six hours a day.  My release date is April 8. I will have outpatient therapy twice a  week for 3 hours a day after I return home.