Friday, February 14, 2020

109

I had five pain free days earlier this week. Kind of a small miracle, which should always be celebrated. Then about two days ago, all the shunt drama returned.  Shunt valve pain with dizziness, distal catheter pain, nausea ,pain in my right eye and scalp sensitivity where my shunt is located.  Last night, my balance was really off, I had walking issues and I was bumping into things.

I've read in the news that soldiers in Iran suffered traumatic brain injuries as a result of an Iran Strike recently. The article can be reach here: 109 troops suffered brain injuries

I just hope these troops are getting the appropriate services they need to assist them in their recovery.

Symptoms of brain injury often never really ever go away completely.... A fellow survivor told me once, that recovery is a marathon and not a sprint.

In the meantime, I've re discovered word search puzzles, which I use to pass time when I'm not out saving the world through volunteering or drawing.

Sunday, January 26, 2020

Grumpy with a side of tea

I've had shunt and forehead pain with a side nausea and right eye pain consistently for over a week now. The eye pain ( strabismus surgery eye ) happens at the same time as shunt and distal catheter pain. My shunt is probably adjusting itself or just being an unruly medical device or both. I've also had scalp sensitivity where my shunt is and am more aware of this when I comb my hair.

Either way, it's made me grumpy and I've been staying indoors when I don't have anywhere I need to be. Pain reliever's haven't been working.

I don't think the settings are have changed. Although, I wouldn't have anyway to check this because...

1. My neurologist doesn't know how to check my shunt's settings
2. The last neurosurgeon I saw in 2018, didn't know how to do this either. Because...

Apparently the shunt I was given isn't used anywhere nearby.

And this is just so helpful...

I can't go back to my ex neurosurgeon (who placed this shunt) because I fired him and he got animated into one of my films...

All I can do is wait for this to go away.

And there's always a little time for a tea...

Sunday, January 5, 2020

3

I had three days of pain free no drama from my shunt this week. Yesterday, barometric pressure headaches returned.  Apparently, there is snow in the atmosphere expected later today.  I've had episodes of dizziness since yesterday. The shunt is adjusting itself again and I feel distal catheter pain in my abdomen yesterday and today. Saturday morning around 11am was when I felt light throbbing from my shunt valve at the top of my head. This happened while I was driving yesterday, which almost never happens. Today, besides the pressure in my forehead, there is some pain in the back of my head from the chiari malformation, I acquired during the shunt revision in 2009.








Thursday, January 2, 2020

2010s

I've been pain free for two whole days this week. Which means...
X Ray image of my shunt 2014 to present.

No elevated csf pressure in my forehead.

No pain from the shunt valve and/or distal catheter in my abdomen and neck.

No nausea associated with the shunt adjusting itself.

No right eye pain (strabismus surgery eye)

No dizziness when moving my head or sensitive scalp.

I also haven't heard my shunt beep since 2016.

So for now, I don't feel my shunt at all. Something I haven't experienced in a while. I took this for granted prior to my shunt being moved in 2009.

Before then, I only knew the shunt was in my brain when it stopped working....

In the 2000s I had one revision in 2009.

In the 2010s I had shunt revision surgery in 2011 and two in 2014.

Having chronic pain makes me grumpy/irritable/depressed and there have been times when I wished I could remove my shunt myself. Obviously, this can't be done...My nervous system cannot survive without one...

It's a great feeling to not be in pain and not want to wage war against my medical device.

Here's hoping for less pain and no shunt revisions in the next decade.




Saturday, December 7, 2019

1am

I've had shunt pain, nausea and pain in the side of my head since Tuesday starting at 1am. It's been very cold along with barometric pressure being low.  There are also moments of dizziness when I move my head or moving up and down.

This has gone on all week and various hours of the day.

Sunday, December 1, 2019

And then the neuro ophthalmologist said..

Today dizziness is somewhat better than the shunt pain madness of last few weeks because..

Last weekend, my shunt was causing some nausea, dizziness, valve pain and balance issues. This happened in the evening and made me nervous, as I had fears the device would fail on me again. The following day, I only had some nausea, shunt pain was gone and I realized my shunt was adjusting itself or just driving me a little insane....because I do believe my medical device is vindictive sometimes.

The good news is, when it was very windy earlier this week and it didn't bother my shunt. Usually when it's windy outside, every gust of wind caused shunt pain.

Yesterday, the coldness outside made my scalp sensitive. It hurt to touch the top of my head where my shunt is inside my skull.

About a week ago, the shunt pain felt like a needle had been pushed down into my skull.

I haven't had shunt failure in five years.

I saw the neuro opthalmologist who repaired my right eye in 2015 after my brain injuries. He told me my eye is doing well. I asked him about the pain behind my right eye. I've had this pain since my injuries in 2015. He said it could be either one of the following, or both:

1. Dry eye - Which can be alleviated by dry eye drops
2. A result of the injuries I had in 2015.

I do notice that when I have throbbing and pain from my shunt, I also have pain behind my right eye. I was told to ask my neurologist about the pain to see if it's related to my injuries.

So we'll see.  For now, I'm going to enjoy being pain free with occasional dizziness.

Friday, November 15, 2019

4 days and a Santa Claus

For quite a while now, I've had some really good pain free shunt/chronic pain days. 

until.....

Four days this week....I had elevated pressure in my forehead followed by distal catheter pain in the side of my neck. Additional pain in the shunt valve which felt like someone had taken a needle in plunged it into my shunt, shooting down inside my head. Some nausea and distal catheter pain in my stomach plus pain in the side of my head. 

This went on for the last four days, starting very early on Tuesday morning. 

Like around 1am.  

Finally, today I had some relief with no shunt or head pain at all. 

Pain medication did nothing for me over the last four days.

I suspect my shunt was either adjusting itself, reacting to the moon and responding to the plunge in weather. In my area, it was like 25 degrees at the beginning of this week. 

The good news is, besides being pain free for the minute, other things that have brought me joy this week are....

Example of black santa claus decor 
1.  Black Santa Claus decorations at my local mall. 
It's still too early for me for Christmas music. Seeing decorations that have a skin tone similar to mine, brings me joy and for a brief moment when I'm not feeling well, makes me smile. 

2. Having songs from The Little Mermaid stuck in my head after seeing the live action/animated show on television last week. I will always love the animated version, I'm a little biased being an animator myself....Still seeing the live action/animated version and hearing the songs again made me happy and was a brief distraction from my head issues...

3. Nintendo...in moderation....

Let's hope for more pain free days and less sharp pains in my shunt that radiate into my head....