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.

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.

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.

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.

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....

Caregivers with fur

Scalp pain returned last night briefly and the last two weeks I've had dizziness when moving my head.

I had some walking issues earlier this week, almost tripped over my legs again in the living room.

Stella the cat 

According to my neurologist who I saw earlier last month, I have something called parasthesias, transient right leg weakness and slight dysmetria.

In October, my cat Stella turned 19. She's helped me recover through four shunt revision surgeries (2009-2014) and multiple brain injuries in 2014.

11/2/19 - Right side of head scar from shunt
revision surgery in May 2014

This weekend, someone asked me about the scar on the side of my head. Most of the time it can't be seen, it's only noticeable when I get a haircut.  I don't mind talking about my brain injuries sometimes, it is usually a good 30 to 45 minute story from start to finish.  However, yesterday, I chose the shorter version of the story explaining I had had surgery it was long story. Wherein the woman replied, 'You're going to be okay right?" and of course, I said, 'Yes, I think I will be''

What a nice random encounter to have with someone on a cold and windy day.  A few days ago, the wind in the evening was bothering my forehead.

My shunt is behaving since then.... No pain for a week already, which is a small miracle in itself.

Brain Walk 2019

Myself behind the Brain Injury
Awareness Sign

Last week, I walked for Brain InjuryAwareness. Because I registered early, I received a T Shirt.

Before the walk, breakfast was available which included bagels, coffee, water and fruit. After the walk was finished, sandwiches and other snacks were provided.

Head and shunt pain has been minimal this week.

The brain tee this year is blue.

I saw my neurologist earlier this month, and my walking and balance issues have improved since my last appointment which was earlier this year.

My doctor had referred me I see a physical therapist during my appointment earlier this year. I realized it was my shoes were uneven on the bottom. This caused my feet to turn inward. Upon changing my shoes, I noticed a difference in how I was walking.

This does not mean I don't still have some balance issues.

I do get the occasional right leg crossing over my left leg and if I'm not aware of this, I will fall on my face.  The leg crossing or 'scissoring'' as they called it in rehab, is random.

This has happened more than once over the last five years since my brain injuries.  I was told by another stroke survivor a few years ago that these things never really go away.

This morning, I heard a familiar sound coming from behind my right eye (where I had strabismus surgery in 2015) I had asked my neuro opthalmologist about this and he had said it was my blood pressure. Behind my eye? Maybe. Or I think it could be the nerve or something.

Looking forward to future brain injury walks and more pain free moments...I've gotten lucky these last few days...