Tag Archives: brain injury

And then the doctor said…

My neurologist said my shunt is working. I had concerns about it misbehaving for three weeks and had inquired about having CT and or a shunt series done. She had told me this wasn’t needed unless it was absolutely necessary. Unless my shunt is obstructed and I’m incapacitated and vomiting on the floor, then a CT scan and shunt series is needed for obvious reasons. Otherwise, I wasn’t getting one.

I had an epiphany while visiting my neurologist.

I realized the reason (besides the one mentioned above) scans aren’t necessary right now is because these doctors know my shunt is working and it’s on the correct side of my brain. I’ve come to this conclusion because with my former neurosurgeon (we’ll call Dr. X) who I fired and animated in one of my films…Prior to my injuries in 2014, I was having a MRI every six months.

I’m surprised I didn’t glow pink from all of the scans…

Dr. X, I believe was ordering the tests because he knew my shunt was in the wrong way and why he was monitoring it so closely. Now that my shunt’s been returned to the correct location, there’s no need to be ‘zapped’ so frequently. The medical professionals around me know what happened to me in 2014 and why. They also realize my medical device is working as it should be.

My neurologist did note during my appointment there is weakness on one side of my body. Something she hadn’t seen since I started seeing her in 2015.  For the next six months, I’ll have physical therapy until I see her again in October.

She was happy to hear my shunt and head pain had stopped for the first time in three weeks. I’m also convinced these doctors know programmable shunt valves are temperamental and react to just about everything between the weather, stress, other magnets and various amounts of csf fluid.

The shunt and scalp pain has been minimal this week. Not sure yet when the top left corner of my scalp throbbing will go away yet. Sometimes it’s there and sometimes it isn’t….so we’ll see.

My medical device can be as temperamental as it wants as long as it means I don’t have to have surgery again.

Cinco Años

Today it’s been five years  ( cinco años ) since I survived multiple brain injuries during a shunt revision surgery. On March 19 of this month, it will be 4 years since my vision was repaired after my injuries.  Only two meals for today since I had this little treat. The cupcake was tasty, the chocolate number five, was just okay. I went to a brain injury support group last night.

Brain birthday cupcake
Shunt revision scars on my scalp indicating my shunt
had been moved in 2014.  Sadly, I’ve seen similar images
from others.
Since my injuries in 2014, I try to inform others about how shunts can sometimes be put in the wrong way inside the brain. I think it’s something that happens more often than we’d like to think. If I hadn’t advocated for myself and insisted my (now fired) neurosurgeon fix my shunt, I wouldn’t be here.  Covert racism has a lot to do with how some doctors dismissed my complaints.

Photo of myself after multiple brain injuries in 2014.
I had some shunt and scalp pain this morning while volunteering at United Way today. Later this week, I’ll be helping Meals on Wheels. 
Left side scalp pain still shows up sometimes. I think it’s where part my shunt used to be or I had one of my three bleeds in that area. 
Photo of myself at brain injury walk in 2018.
The scalp pain is a significant amount less than it was when I returned home from rehab in 2014. Most of the pain I get is as mentioned before, is from my moody and vindictive programmable shunt valve. Grateful to have survived and that the multiple bleeds I had didn’t result in more shunts being put in my brain. 
Dealing with one is enough.
I made a film about my injuries and recovery as a coping mechanism and to help educate as many people as possible about hydrocephalus and brain injury.  
Therapy helped me a lot to deal with the trauma of my experience. I laugh to myself when I think about the moment I was laying in the hospital (see above) with a bandage covering my head, crossed eyes and partially paralyzed from the waist down. I was angry and sad and at the same time realizing, I had to document my experience. 
Artists like myself, are always looking for inspiration for our work….
Here’s to several more years brain surgery free!