Eclipse

Total Solar Eclipse from tv

View from television 13 minutes before Eclipse starts.

Stella and I are waiting for the eclipse to start
today (August 21, 2017)

Today I've had bad shunt and head pain since this morning. Pain down the distal catheter on the top of my head and stomach. Some forehead pain and shunt pain at different times during the morning and into this afternoon.

The solar eclipse is today so I suspect this has something to do with the ProGav misbehaving.  In anticipation, Stella the cat and I are watching the eclipse on television this afternoon.





Last weekend, I visited the Boscobel Gardens in Garrison, NY. The weather was perfect, as usual, my shunt didn't like the high altitude at all.  Despite the pain, I was
still able to enjoy the visit.

                        
                       My trip to Boscobel Museum August 13, 2017

Science behind Barometric Pressure

Finally! An explanation about how barometric pressure affects people in different ways: NY Times

I found out about a brain injury walk event this summer.  Hudson Valley March

This should be interesting....

Recall and not the movie....

I learned this week from an online hydrocephalus support group, there was a programmable shunt recall as written by the Food and Drug Administration (FDA). A few months ago, (March 2017)  the Medtronic StrataMR Adjustable Valves and Shunts were recalled due to causing possible severe injuries or death in the people who had them.  The company which makes them, Medtronic, recalled the shunts/valves because they caused under-drainage of csf fluid in the brain. When under-drainage occurs it can cause buildup of fluid in brain cavities causing hydrocephalus.

When I had heard a shunt had been recalled...I secretly hoped it would be mine...then maybe I could get a different one which wasn't so temperamental...

This was not the case, as I know I would've gotten a phone call from my neurologist if the model I have was recalled.

I read another programmable shunt valve, the Codman Certas had been recalled in 2013.  I'm all about advanced technology. I just wish there was a way of knowing what these devices will do inside someone's body.  In my opinion, the programmable shunt valve is like a little robot. Sometimes I hear/feel it, other times I don't. I've learned over the last 3 years with this new device it doesn't like various types of weather (rain, cold, humidity).

It's too bad my shunt doesn't work like Alexa.

Reading about the shunt recall made me think about the film, Total Recall from 1990.

At least a few

At least I had a few good shunt days were I didn't feel the shunt at all. This all changed a few days ago once it started to rain and get all crazy fall like weather in the 'spring". I didn't volunteer today because I've been feeling nauseous, dizzy, and have had shunt pain throughout yesterday evening and into the early hours of today. Couldn't sleep on my right side (shunt side) too much because of discomfort and throbbing behind my right ear. Since this morning I've had pain from the distal catheter in my abdomen. Maybe the body is producing more csf than usual or my shunt is just being temperamental. Probably both.

Since the weather has been trying to move into "spring" I've started wearing my brain injury and hydrocephalus awareness shirts.

Happy Shunt

Since the weather has been getting warmer, my shunt has been behaving itself.  Since Wednesday, the ProGav hasn't been bothering me, no scalp pain, no shunt noises. One day this week I heard the distal catheter drain csf into my abdomen. Other than that, it's been behaving itself.  As the heat outside get warmer, the humidity bothers my shunt sometimes and I can feel the heat directly from the sun on the magnet inside my head. I have to remember to wear a hat when I'm outside during these summer months.

On Television

I joined an online adults with hydrocephalus support group a while ago and occasionally receive updates from group members. I also read about stories people in the group post. This week I found one which was familiar based on the television show, Face/Off.

The last time I watched a few episodes was during a shunt revision stay in the hospital in 2011.
Someone in the group had mentioned the March 22, 2017 episode of this show was about Frightening Families.  Group 1 featured three characters from a circus trio. One of them was a child like creature with an enlarged head in a wheelchair depicted as having hydrocephalus.

People in the online support group were quite upset about this depiction. I wasn't happy about it either. Especially since it doesn't represent everyone who has hydrocephalus. We know hydrocephalus affects people of various ages: infants, children and adults. Unfortunately, since hydrocephalus isn't well known, a lot of people automatically think most people with hydrocephalus are severely disabled. Many people in the support group commented on how this episode reinforces these stereotypes.

I wrote a comment about this episode to Syfy.

The full episode of Face/Off which aired March 22, 2017 can be found Youtube.

At 31:19 - The family of creatures in the circus are introduced to the judges.

At 34:02 - Where the judges analyze the wheelchair character with hydrocephalus

A description of the episode can be found here.

3rd

Today is the third year anniversary of my multiple brain injuries on March 6, 2014.  For now, my shunt is behaving itself. The last few months, specifically the last weeks have been brutal in terms of pain. Especially yesterday, when it was very cold where I live, like around 15 degrees outside. The cold weather as mentioned in previous posts bothers my shunt.

Today, I'm going celebrate my 2nd birthday by going to a movie and lunch. I made a film about my shunt struggles and brain injuries. Copies can be purchased here.