Saturday, November 5, 2022

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.