Thursday, August 4, 2022

side

For about a week now, I've experienced the following:

Pain from the chiari malformation by my cerebellum

Pain on the top of my head on the left and right side.

Pain in the distal catheter and down the side of my neck. I suspect over the last 8 years this is because of the brain damage I have from my shunt being on the wrong side of my brain for 5 years. I now have a condition called slit ventricle syndrome

Dizziness and right leg crossing over the left leg while walking. If I'm not aware of this as it happens, I will fall. When I was in rehab in 2014 after my injuries, my physical therapist had called it scissoring because I had multiple injuries on my brain which caused my legs to cross over each other like scissors. 

Nausea from the distal catheter in my stomach which meant that my shunt was readjusting itself.

I've had pain behind both of my eyes.

8/2 - Ringing in my ears from the left to the right side

Today 8/3 - TMJ issues in my jaw - it locked randomly while I was talking - There are exercises I do when this happens. It doesn't take away the TMJ completely just makes it more tolerable. Today some pain behind my right ear from the catheter. 

Many things such as the weather, satellites, the moon, barometric pressure, thunderstorms contribute to my shunt issues. 

At least I know that it's working and that I'm not alone in my chronic pain issues. 

What I've had in the last week makes me nervous sometimes as anyone with a shunt will tell you - There's no way of knowing when it's going to stop working. 

And we know medical technology is not that reliable in detecting these things.

Unless you're on Star Trek where they'd be able to tell you within 5 minutes what was going on and when the expiration date was. 

The pain I've had behind my right ear is from both the distal catheter and from the fragments of my shunt that fell apart inside my body in 2014 that are still in the side of my neck and in my stomach. 

When the pain is bad like it's been in the past and this week, it makes me sad and angry. 

And when this happens, I engage in health coping mechanisms like reading, coloring, and the occasional Nintendo therapy. 

No Nintendo therapy recently because of chronic pain issues. 

Today 8/4 - I had head and shunt pain issues for a few hours. By the afternoon, I was feeling better. I hope this continues through the weekend....

Saturday, July 16, 2022

friends, movies and books

This week in the world of chronic pain with my cerebral shunt:

TMJ issues in my jaw.

Pain and pressure behind both of my eyes.

Dizziness

Pain on the shunt valve and distal catheter in my head and neck.

Fell up the stairs after loosing balance because legs just got confused again. 

Knocking in my head from the left ear to the right ear. 

Chronic pain issues from my injuries and medical device sometimes makes me sad and angry. So as a distraction today, I turned to movies like Iron Man and reading.  I got to enjoy the film with some furry friends:

In this photo, the dragon is from Plush in a Rush, he was a souvenir from an escape adventure room like 5 Wits. The sock monkey was made from a sock monkey kit, the flamingo is from Build a Bear Workshop and Iron Man is from Ty Store.

Today, (7/16/22) I have pain behind both eyes, dizziness and walking issues, a headache in the back of my head from the chiari malformation. Pain on the top of my head on both the left and right side. Occasionally today, I've had double vision where my right eye (surgery eye) drifts and then snaps back into place. It's not that I can't take medication for this, I can. I try to me mindful of how much I take as some things like advil can harm the liver. 

I like having a liver.

When my neurologist has prescribed medication for me in the past, I have side effects like numbness in my legs that I didn't like. I've taken natural pain reliever with no weird side effects, there are days when they work and other times when they don't. 

The changes in the weather and barometric pressure effect my shunt and chronic pain from my injuries. I know I am not alone when I talk about this. Many people both children and adults who have cerebral shunts and/or other medical conditions also experience discomfort when the weather changes and anything else that's in the atmosphere. 

I'm convinced that satellites also impact medical devices and chronic pain. 

I just wish there was more to help us. On bad pain days, I get nervous and worry about when my shunt will need another revision. I hope to never have to experience that again. As I've mentioned in previous posts, I wish we had a way to we could predict when our shunts needed revisions. I mean people with diabetes can monitor their glucose levels with dexcom devices. People living with hydrocephalus can't do this with their shunts. Will the madness ever change?


Tuesday, June 21, 2022

More than 3 days and the rain

The rain and the barometric pressure caused my chronic pain issues.  Last week, there were three days of the following symptoms:


Pain in the back of my head from the chiari malformation.

Pain behind my eyes.

Dizziness and some double vision when turning my head to the right.

Pain on the shunt valve. 

I sometimes take pain medication to better tolerate and or reduce the pain I feel. If I don't have to go anywhere and I feel this way, I don't go out. Last week, I had places I needed to be, and I didn't have the option to stay home.  I took medication during the day, and it didn't relieve my symptoms. 

I didn't feel better until a few days later. Today is a huge improvement from how I was feeling during the weekend and part of last week. 

I do find it comforting to talk to others who also experience pain from the weather and pressure changes. People who have medical devices, medical conditions chronic migraines experience chronic pain from the weather and who knows what else is in the atmosphere, like the phases of the moon and satellites.  It's just nice to know I can talk to others who can relate. 

When I don't have to be anywhere, and I have chronic pain issues there's always time for at least an hour of Nintendo or drawing. 

No Nintendo therapy today (6/30) due to pain behind my eyes and pain on the top of my head and down the side of my neck from the distal catheter. 

Saturday, May 28, 2022

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.



Sunday, May 1, 2022

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

Friday, April 22, 2022

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.

Saturday, March 19, 2022

fog and then some

 The ice storm last weekend left me with chronic pain from both my head and cerebral shunt. Today there's pressure in my forehead and pain on the shunt valve. The fog yesterday and earlier today only added to the pain issues. The walking issues have returned briefly this week with my right leg crossing over my left leg. I've become better at paying attention to this, as I can stop myself from falling forward.  

 This afternoon, I feel pain on the shunt valve, pressure in my forehead and pain behind my right eye. 

 The right eye pain is an improvement from last week, when I had pain behind both eyes.  

I managed to get some drawing done today which was a huge improvement from last weekend, where I couldn't do anything because I was uncomfortable. 

I met with my local brain injury recreation group this week. It's always nice to be around others who understand what it's like to have a shunt, chronic pain and other issues associated with living with a brain injury.