9

 This week marks nine years brain surgery free and nine years after surviving multiple brain injuries during shunt revision surgery in 2014. I needed two surgeries to fix my shunt that year. It doesn't feel like it's been that long.  I feel the shunt all the time now because of the injuries I had to my brain.  No two shunts are the same and everyone ( both children and adults ) have different experiences. 

Every year I have a cupcake or a pastry and put a candle in it to celebrate being surgery free and surviving all of this nonsense. Photo is below. The only year I didn't do this was in 2015 ( the first anniversary), as I was waiting to have surgery to repair my eyesight.  

It's windy outside today and my shunt is behaving itself, for now. 

I've been into music from some movie soundtracks such as:  Iron Eagle (1986) Hercules (1997) This song was playing in the background while I was at the store earlier this week Daft Punk. Made me think of this whole brain birthday celebration I do like every year. Not in reference to having more surgery, obviously.

 I made a film about my brain injuries to help spread awareness about brain injury and hydrocephalus it can viewed here. I'm a starving artist with a chronic illness. One of many out there living with hydrocephalus. 

the weekend

Many people both adults and children who live with a chronic illness, unruly medical device and/or chronic pain have various symptoms they deal with daily. I'm just one of many. 

Sounds are bothering me this weekend. I had to put on noise canceling headphones because the sound of cabinet doors closing and radio was hurting my right ear. Since my injuries in 2014, I have some tone issues with that ear as it was bleeding after my injuries.  

I took pain reliever in the morning, it reduced my symptoms. They were still lingering even after taking medication. 

 The rest of the day I still had:

Pain behind both eyes.

Noises from behind my right eye. 

Nausea

Pain from the distal catheter in my head and pain from moving my head from side to side.

Pressure in my forehead.

 And my left leg crossed over my right leg while I was in the kitchen. I was able to catch myself and avoided landing on the kitchen floor. 

Music helped me yesterday and a today to distract me..I'm still waiting for that Powerline Album...

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. 

10

 This yea  marks 10 years since I started this blog and began documenting my cerebral shunt's daily activities. At the time, I wasn't aware my shunt was on the wrong side of my brain.  I would figure this out on my own while in the neurosurgeon's office in 2014. 

More on that later...

My shunt has been behaving itself today. Last week, I had shunt valve and head pain in different parts of my head.  Upon taking curamin, the pain on my scalp went away after a few hours. The shunt pain still remained. 

No pain behind my eyes over the weekend, which meant I had a little time for the Nintendo game, Snow Bros. Appropriate for the cold weather and the music can get stuck in your head.

Several hours and a santa

I had chiari malformation headache in the back of my head (by my cerebellum) starting at 5am this morning. This was followed by pain on the shunt valve and nausea. My shunt was adjusting itself. I haven't heard it beep since 2015 and 2016 which is a good thing. I'm even more thrilled that it's still working.

I took pain reliever early this morning  and mid morning (both times with food) pain was reduced by 60% still lingering in the background. This went on for 6 hours. Pain wasn't completely gone until 4pm.  

Today I had double vision issues, where my right eye was drifting and then snapped back to where it was supposed to be. It's disorienting because it's random ( like my balance and walking issues ) 

Again, it makes me nervous about the thought of having eye surgery again. My eye surgeon told me at the time, there was a chance that I may need surgery again. I'm grateful I haven't needed this yet. 

I've been having balance issues the last few days.  For example, getting up to stand and tipping backwards. Many people living with a chronic illness, chronic pain and medical devices deal with their own challenges and have different experiences from mine.

Others things I found helpful to get me through my chronic pain and unruly medical device nonsense has been listening to the soundtrack to Spirited Away. 

The holiday Santa (to the left) makes me smile especially on days when I have pain and walking issues.

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.

HAM 2022

I've been up since 4:30am with:

Pain and pressure in my forehead

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

Pain on the shunt valve

Pain behind my eyes from injuries in 2014.

Pain on the top of my scalp on both the left and the right side. 

Some nausea in my stomach.

Medication reduced the pain a little, still have pain behind my eyes and in my head. We'll see how this improves throughout the day.

 I had three pain free days this week. 

 It was a letdown this morning because I made the effort to sleep on my left side to avoid head pain issues. Sleeping on the right side is risky as it can irritate the fragments of my old shunt that stuck inside my neck from my injuries in 2014.

Also the right side is where my shunt is and if I turn my head the wrong way on the right side, causes issues with the distal catheter. 

September is hydrocephalus awareness month. 

I'm just one of many people young and old who has a shunt in their brain and has to deal with all the drama that comes with it.

I made a film about my brain injuries in 2014. It can be viewed here. I am not famous, just a starving artist with a chronic illness.

Because of the pain behind my eyes no Nintendo therapy today. 

Maybe in the late afternoon, I'll attempt to color.  

It took four hours for my head pain to go away. By 11am I still had pain behind my right ear and some shunt pain.