Themes

Last month in January, I had the following:

Pain behind my right eye (where I had strabismus surgery) I was told the pain I feel behind one eye or both is not from the surgery I had in 2015. Rather, it's from the internal injuries I had. I also had pain in front of my eye. Felt like a needle was being pushed into it. This is the same pain I've experienced at the top of my head sometimes.

My shunt making self adjustments with a side of nausea.  This is better than when it was beeping in 2015 and 2016...I haven't heard any sounds from my shunt since then.

Scissoring issue with my right leg crossing over my left. I didn't fall - I was able to catch myself in time. This is random, as I've mentioned before and happened this morning when I went to turn on a lamp. 

Hearing sounds from behind my right eye. I was told this wasn't from my surgery, it's from in the injuries I had. 

Right eye drifting issues.

Sometimes pain reliever it helps, other times it doesn't. Depends on where the pain is coming from. 

One thing which makes me smile  with all this chronic pain nonsense is the soundtrack to Ducktales which encompasses music from both the television series and the nes game Ducktales (1990).

Let's not forget how awesome the music is from Chrono Trigger (1995) 

Nintendo therapy with Starfox (1993) was unsuccessful last week - I was having drifting eye and eye focusing issues. You have the point of view of the pilot in this game and there are times when objects are flying towards you quickly plus you have to save your teammates while being attacked by enemies. I was having visual sensory overload - Doesn't usually happen for me with Starfox and I blame atmospheric pressure and brain damage.

I did make a second attempt the following week and only had one game over and was successful in finishing the game on level 1.  Of course, this second attempt made me think of a song by Aaliyah.

I'm just one of many people with a shunt, I have my own coping mechanisms.  Many children, adults and their families live with chronic pain and chronic illness. Everyone has their own way of coping with this and dealing with pain management. 

4 hours and a soundtrack

 I was having right eye pain and nausea from the shunt today starting in the morning around 6:30am. I also had pain from the shunt valve all the way down the back of my head following the distal catheter. There was also pain behind my right ear, which I was told is from the fragments of my old shunt.   

I took pain reliever, curamin at 11am.  Four hours later, I had less pain. It wasn't completely gone, still lingering, just made it more tolerable. This will help with some of the pain (not shunt pain), it will not alleviate the following: TMJ, walking and balance issues.

 I still decided to stay home.

I saw my neurologist recently and she told me my shunt looks good and doesn't appear to be broken anyway ( like in 2014 ) 

It was suggested I try Botox injections to my forehead and in different parts of my head ( not near by shunt ) to prevent migraines. According to the doctor, what I am experiencing are migraines. 

I don't believe this. 

I've known since my shunt revision in 2014 that the pain I experience is from the multiple injuries I had during surgery. 

In 2009, when my shunt was placed on the wrong side of my brain, I acquired a chiari malformation.  Sometimes I get headaches in the back of my head, more so if I put pressure on that area. Like if I'm laying on my back ( which I avoid ) or leaning the back of my head against something. Because it was on the wrong side of my brain for 5 years, I also have slit ventricle syndrome.

For now, the curamin is working to reduce the pain in my head by 60%. It doesn't work on pain issues from the shunt valve or distal catheter. It also doesn't alleviate nausea from the shunt making adjustments or whatever it feels like doing that day.   I'm not alone dealing with chronic pain, an unruly medical device and a chronic illness. People of all ages have their own ways of managing their illness and or pain issues. I'm just one of many.

I resumed nintendo therapy yesterday and enjoyed time with Chrono Trigger. A fun way to escape lingering chronic pain issues. The soundtrack is great too and nice to put on as background music.

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.