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.

Shunt O Gram 2016

At last, I received the CD with my Shunt O Gram from June 2016.  It's so nice to see and feel my shunt working properly. The ProGav is temperamental as the device has a mind of it's own. Just this past week, the ProGav reacted to the wind, cold and rain storm (from last night).  I did not enjoy this. Today things are better. I have to be careful about not verbalizing how I feel as I suspect the ProGav may be self aware and reacts to me having a "good" day. Notes from the x rays are below:

Current profile view my shunt.

Abdomen view of current distal catheter and old catheter (far left)

Close up of distal catheter (end)

Notes from VP Shunt series:

CLINICAL INFORMATION: VP shunt
DESCRIPTION:
Technique: AP and lateral views of the skull; AP and lateral views of the chest; AP and lateral views of the abdomen.
Comparison: None available.

FINDINGS:
Right frontal ventriculo-peritoneal shunt is seen coursing through the right neck soft tissues, anteriorly through the chest wall, and coiling in the pelvis. Catheter fragments in the right neck soft tissues and right abdominal wall likely represent retained shunt fragments. No evidence of fracture or kink.

IMPRESSION:
VP shunt catheter, as described, without evidence of fracture or
kink.

January Neurologist visit

Saw the neurologist on Tuesday. She had brought up an interesting point during our meeting. She had told me to be mindful of my mood and how that may have an impact on my shunt and scalp pain. I hadn't thought about this before. It makes sense.  The ProGav doesn't like rain, humidity, snow or extreme heat.

I'll have to be mindful of my mood and certain triggers which may impact how I feel and the ProGav.

Found a good website about how Hydrocephalus, sounds like a movie title:

Hydrocephalus: the lethal condition

Barometric Headaches

Yesterday, was the first day I had relief from an intense barometric pressure headache from my shunt.  I was doing really good for a little over two weeks now and then on Monday, the ProGav decided began rebelling again. As mentioned in previous posts, the device or robot inside my brain is temperamental when it comes to the weather.

Someone shared a link with me this afternoon about how to deal with Barometric pressure.

Then there's also the effects of Hydrocephalus on the brain, things I didn't even know before...
I know internal organs can heal themselves.

The brain doesn't recover from damage. I wonder why this is. I see my neurologist next week and may ask her.

hydrocephalus in the news

Read two stories this today about hydrocephalus:

The first, is about a woman who was denied healthcare coverage because she was attempting to get care out of her state: Insurance denies woman with hydrocephalus

The second, is about one of my favorite authors, Roald Dahl. He had a family history of hydrocephalus: Roald Dahl and hydrocephalus

About Empathy

Well, my theory about the scalp pain may have been off...There was some throbbing on the left side of my scalp today and yesterday after not feeling anything there over the past month. Not sure what that means....it's weird.

I read an article today about the differences between empathy, compassion and sympathy and how doctors need to learn more about using empathy with their patients. I mentioned in my film, Shunt Chronicles: My brain, art and school (2015)  how my previous neurosurgeon lacked empathy in regards to my situation.

Link to Article: Why Doctors Need to Show More Empathy.