Saturday, August 21, 2021

3am on Wednesday


Millions of children, adults and families living with a cerebral shunt because of hydrocephalus spend a lot of time walking on egg shells because you never know when a shunt will become obstructed and stop working. Or in other cases become infected or fall apart inside the body.

Earlier this week, Wednesday morning around 3am, I found myself vomiting on my bedroom floor followed by sitting on the edge of my bed thinking about my symptoms and worried it might be my shunt failing.  

I realized later that it was an episode of what I now know was food poisoning.

During the early morning hours of August 18, I had to assess whether or not it was shunt failure.

I had vomiting….

I didn’t have any of the following:

Severe shunt pain,

My head wasn’t stuck in a downward position and my eyes weren’t sun setting… or turned downward

No gaited walk and my right eye wasn’t forced to close due to the buildup of cerebral spinal fluid inside my skull.

Around 4am, I sat on my bathroom floor waiting to vomit again. When that didn’t happen, I went back to bed.

It’s situations like this when I wish we had better technology to detect when a shunt will stop working.

I mean they have a device, the dexcom for people with diabetes that tells them what their glucose levels are. They can use their phone to read these levels.

We can do almost anything with our phones now.

Why can’t something be done that’s similar with these programmable shunt valves?! I mean I would think you’d be able to at least order takeout food or pick up on a few radio stations with this ‘advanced technology’ inside my brain.

They’ve used the same technology (with some improvements) since the invention of the shunt in 1956.

Not much has changed in terms of treatment.

At least I’m one of many who continue to be frustrated…

I know when my car needs an oil change every 3,000 miles.

I know when certain foods/beverages expire in my refrigerator or cabinet because they have expiration dates on them.

I don’t know when the programmable shunt valve in my brain will become obstructed and stop working.

CT scans and x Rays are used to determine whether shunts are working properly. Sometimes these things are accurate, other times, they are not.

My shunt in 2014 fell apart inside my body and was leaking out into my abdomen and all down the side of my neck internally.

Tests were done and nothing could be determined until I insisted on surgery because it was obvious to me something was wrong despite the technology saying otherwise.

We need to do better. We need Star Trek level technology NOW for individuals and families living with hydrocephalus this way we can all manage our symptoms better. 

The good news is my shunt behaved itself today and I was able to go out for a walk before the incoming hurricane….

And I heard this Journey song today which made me smile and brought back memories of when I was living in Mississippi while serving in AmeriCorps NCCC. We had a music contest and this song was one of the songs on our playlist.





Saturday, August 7, 2021

Flamingo Saturdays

Millions of people who have cerebral shunts and/or brain injury or both have chronic pain symptoms often for life. Today Saturday, this morning at around 8:03am I had sharp pains from my shunt valve. What I usually use for pain relief where it be tumeric or advil, it works to reduce the pain sometimes and other times, it doesn't work like more recently. Occasional episodes of nerve pain on the top left side of my scalp. That hasn't happened for a while now like a few months. This week I've had the return of the following - dizziness and elevated csf pressure in my forehead and eye pain behind my right eye in addition to pain behind both eyes. While standing up on Thursday,  I had scissoring issues and my right leg crossed over my left leg...I caught myself from almost falling. I've also had episodes this week of TMJ, Tinnitus and vertigo and the return of the chiari malformation headache in the back of my head. What makes me smile during episodes of chronic pain and shunt issues is my new flamingo friend.

This furry friend is from Build A Bear workshop. The whimsical nature of this stuffed animal brings a smile to my face an joy to my heart especially when my shunt is unruly and I have other chronic pain issues.