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...

Waves of communication

Grocery store robot moving in store

Last week and parts of this week, the pain medication I usually use for my chronic head, neck and abdominal pain didn't work.  I did my usual activities of volunteering last only to return home and try to forget the pain.

At times this didn't work very well, although I managed. I was grumpy, yet I managed.

I colored and sketched a plastic pumpkin. It was out of proportion.

Now it has googly eyes

This morning, I had pain issues again in my head and I took curamin for the pain. So far, it's been working the entire day.

Not sure what was happening over the last week.

Maybe it was the weather transition of Summer to Fall...

As I may have mentioned in a previous post about the Stop and Shop robot....

When I am in the grocery store, I run away from the robot which is suppose to alert the management about spills and maybe shoplifting?

It's too bad my programmable shunt valve ( and it's super advanced technology, sarcasm ) doesn't allow me to communicate with this robot electromagnetic waves or something.

3 days and a statue

September is Hydrocephalus Awareness Month. Last week, there were three days when pain medication didn't work. It was very humid outside those three days and who knows what other magnetic forces were floating in the air....

Visit to Philadelphia, PA in early August. 

These last few days have been either pain free or reduced throbbing at the top of my head and neck. Which is a huge improvement from constant pain felt over the last few months.

Elevated pressure in my forehead this morning. Not taking anything for now because the discomfort isn't debilitating.

As usual, I'm going to take advantage of this reduced pain and
scrapbook.

I escaped to Philadelphia, Pennsylvania this summer, got lucky with the beautiful weather for the short time I was there.

In Isle 6

My shunt and chronic pain was mild today.  For about a month now, I've been taking the vitamin, Curamin as needed. Curamin has helped a lot with my pain and reduces it by a lot to the point where I can focus better. There are some days, when this doesn't work like one day last week, where it was very humid outside. I had stayed indoors the entire day. I still felt lousy with head and shunt pain despite taking the Curamin and later taking ibuprofen.  

Taking it as needed has been working for me and is way better than the nerve blocker my neurologist had prescribed a few years ago. The side effects were making my fingers tingle and numb. 

Last month, a Home Sentinel pest repellent was added to one of the walls in my building.  I noticed if I get too close to the device, I can feel the electro magnetic magnetic waves. This sometimes happens when I walk through the small metal detectors. As mentioned in previous posts, I can't go through the airport security machines because the giant magnet could turn my shunt off or change the settings.  

There's a robot at my local grocery store and it's been there for about two months. I try not to get too

Grocery Store robot sliding away to another part of the store

close to it for the same reasons why I don't walk directly in front of the Home Sentinel. I don't pick up on any electro magnetic vibes from the robot yet.  It's funny through seeing other people at the store interact with the robot. Some like myself, avoid it, while other people, like children point and shout at the robot.

I've seen some store workers get upset with the robot because it doesn't seem to respond to verbal commands.

The robot also speaks spanish when it's lights turn yellow. 

Robot now has large eyes 

Maybe it will get programmed to take verbal commands. All it needs now is a smile to go along with the eyes....

3

I had three days this week of bliss without cerebral shunt or chronic pain. A huge improvement from the last few months. Yesterday, this changed, as the shunt began to rebel again.  Today, some of the same pains from before have returned like shunt pain, distal catheter in abdomen pain and dizziness when I move my head from side to side.

New Medical Fashion....

The good news is I received my medical ID bracelet in the mail. I've had a shunt since early childhood and it never occurred to me before to wear one indicating I have a cerebral shunt.

I would think all doctors should suggest to their patients who have internal medical devices to wear something which would indicate they have an internal device. Some do and others don't.

I already have a medical card I carry with me that has my medical, doctor and emergency contact information.

How would an EMT know to check my bag for this information? Like for example in the event of an emergency, if I'm unconscious for whatever reason (accidents, fainting or squirrel attack ) At least someone will know where to find information and contact my doctors and family.

7.7

No chronic pain today. Yesterday I was nervous because all day since the early morning hours  (around 5am) I had pain from my shunt, eye (where I had strabismus surgery in 2015) and nausea I suspect from the distal catheter in my stomach.  I hadn't experienced this type of intense discomfort in a while and it made me worried my shunt might begin failing again soon.

There have been a few days this week where I didn't get as many hours of sleep as I may have wanted due to pain issues.

To my surprise today upon waking up, there was no pain at all.  All of my symptoms from the day before and the last few months where gone.

I've been a little less productive due to chronic pain and lack of energy...

Since today is pain free,  it's time to be creative....

Happy music video  in the background....

And then it was the sun?

I was feeling good today until I walked outside this morning. I didn't know today there was a solar eclipse.  Since it's gotten warmer out, I've made a habit of wearing my hat when I go outside because of past experiences with my cerebral shunt not reacting well to the heat.

This morning, I felt an odd sensitivity around my head the moment I walked out of my building.  At different times during the day I've felt the usual dizziness and forehead pressure. When I turned on the news this evening I saw a live stream of the solar eclipse.

Shunt, Pixels and Software

Having chronic pain means I have an excuse to draw.  I’ve illustrated myself in navigating the battle against my shunt:

Summer Flower Fun

Outside with flowers and a cool building. 

Yesterday was better in terms of head/shunt pain issues. Last Saturday specifically was the worst day in a long time, four hours of pain until it finally went away in the afternoon. My medical device gets temperamental depending on the weather and phases of the moon. I was fortunate enough earlier this month to go exploring with a friend and encountered several flowers and architecture.

It's been a while since I completed a book and earlier this month, I finished working on one.  A short post about it can be found here.

6/1/19 - I don't know what it is about Saturdays. Last Saturday was a bad shunt and head pain day. Today is also Saturday and it's another bad chronic pain day. I tried again to take medication in the afternoon, and not much of an improvement even after 6pm. Continuous eye and shunt pain both at the same time.

6/2/19 - Shunt, eye and distal catheter pain in stomach at various time during the night, especially early in the morning like around 2am.  I could go on a profanity laced post about my shunt, I'm not going to though. I have a better idea about expressing my extreme frustration with my medical device.

More on that later...

Markers and Spring

May is stroke awareness month. This week it's been lots of dizziness, shunt pain and the occasional pain behind my eyes. The eye pain is mostly behind my right eye, where I had double vision for a year and twelve days after my brain injuries. I had surgery to correct my eyesight in 2015. 

Group photo of volunteers Spring Day of Caring

Earlier this month was my local United Way's Spring Day of Caring. As usual, it was a good way to get out and distance myself from chronic pain issues. I received a free shirt and two sandwiches... I saved one sandwich for the following day. 

Additionally, the coloring group at my local library this week helped me distance myself from pain issues. 

Diez años

Cupcake celebrating surviving
botched brain
surgery.

Earlier this month, I celebrated ten years ( diez años ) since surviving my shunt being moved during a revision surgery in April 2009.  I didn't know at the time my shunt had been moved. At the hospital, I wasn't properly intubated as the tube used was too large for my throat. I stopped breathing after the surgery around 2am while in a hospital room.  When I opened my eyes, my lungs were burning and I couldn't get air down my throat.  I could still feel the sensation of the tube inside even though it had been removed. I was given oxygen and barely started breathing again after what seemed like a very long time.

A month later, I graduated with my first Master's degree.

Then the shunt drama continued....

I'm noticing a pattern when I enter into higher education, I end up having brain surgery. When I was enrolled in my second Master's program, I had brain surgery then too.

I'm not planning on returning to school anytime soon....

Cupcakes are always a joy during survival anniversaries such as this one. Still here and raising awareness....

And then the doctor said...

My neurologist said my shunt is working. I had concerns about it misbehaving for three weeks and had inquired about having CT and or a shunt series done. She had told me this wasn't needed unless it was absolutely necessary. Unless my shunt is obstructed and I'm incapacitated and vomiting on the floor, then a CT scan and shunt series is needed for obvious reasons. Otherwise, I wasn't getting one.

I had an epiphany while visiting my neurologist.

I realized the reason (besides the one mentioned above) scans aren't necessary right now is because these doctors know my shunt is working and it's on the correct side of my brain. I've come to this conclusion because with my former neurosurgeon (we'll call Dr. X) who I fired and animated in one of my films...Prior to my injuries in 2014, I was having a MRI every six months.

I'm surprised I didn't glow pink from all of the scans...

Dr. X, I believe was ordering the tests because he knew my shunt was in the wrong way and why he was monitoring it so closely. Now that my shunt's been returned to the correct location, there's no need to be 'zapped' so frequently. The medical professionals around me know what happened to me in 2014 and why. They also realize my medical device is working as it should be.

My neurologist did note during my appointment there is weakness on one side of my body. Something she hadn't seen since I started seeing her in 2015.  For the next six months, I'll have physical therapy until I see her again in October.

She was happy to hear my shunt and head pain had stopped for the first time in three weeks. I'm also convinced these doctors know programmable shunt valves are temperamental and react to just about everything between the weather, stress, other magnets and various amounts of csf fluid.

The shunt and scalp pain has been minimal this week. Not sure yet when the top left corner of my scalp throbbing will go away yet. Sometimes it's there and sometimes it isn't....so we'll see.

My medical device can be as temperamental as it wants as long as it means I don't have to have surgery again.

3 weeks and some colored pencils

Since the week of March 11, my shunt has been misbehaving. My medical device is working, just acting like an unruly child. The changing temperatures outside are not helping. Additionally, my shunt adjusts each time I move my head and I can feel when the device is processing a lot of csf fluid. When this happens, there is pain on the shunt valve and through the distal catheter at the top of my head.  I've felt nausea some days from the catheter in my stomach.  Then there's the dizziness when I am walking sometimes...Yesterday the discomfort and pain was making me nervous because I'm always trying to pay attention to whether the shunt is failing or not. It's been five years and so far things are going well. There are times like these when I get uncomfortable and with good reason...

If it's not one thing like the shunt valve pain, then it's pain from what I suspect is still scar tissue from my injuries in 2014 on the left side of my head. This was gone for a while and then occasionally re-appears at random parts of the day. It's like my scalp is still searching for pieces of my shunt on the left side of my head. There are family issues going on too, which I'm not going to get into....totally not helping the situation.  

To distract myself from the head issues and everything else...My local library has a coloring therapy group for adults.  Just nice to sit with a few people, enjoy some tea and color various designs. This reminds me of a book I read called Zentangle, where you can create drawings which create a calming affect.  

I just hope my head and shunt pain diminishes soon. It's always a challenge dealing with a chronic illness like hydrocephalus and chronic pain, as any family or individual will tell you.  If anything, I feel like pulling out the short hair in my head out of frustration dealing with my shunt...Not knowing what it's going to do each day or hour.

In the meantime, I see my neurologist soon and perhaps this will lead to CT scans...

Update as of 3/20/19 - shunt valve pain all night with pain in my right eye. The many joys of living with hydrocephalus.....

Cinco Años

Today it's been five years  ( cinco años ) since I survived multiple brain injuries during a shunt revision surgery. On March 19 of this month, it will be 4 years since my vision was repaired after my injuries.  Only two meals for today since I had this little treat. The cupcake was tasty, the chocolate number five, was just okay. I went to a brain injury support group last night.

Brain birthday cupcake

Shunt revision scars on my scalp indicating my shunt
had been moved in 2014.  Sadly, I've seen similar images
from others.

Since my injuries in 2014, I try to inform others about how shunts can sometimes be put in the wrong way inside the brain. I think it's something that happens more often than we'd like to think. If I hadn't advocated for myself and insisted my (now fired) neurosurgeon fix my shunt, I wouldn't be here.  Covert racism has a lot to do with how some doctors dismissed my complaints.

Photo of myself after multiple brain injuries in 2014.

I had some shunt and scalp pain this morning while volunteering at United Way today. Later this week, I'll be helping Meals on Wheels. 

Left side scalp pain still shows up sometimes. I think it's where part my shunt used to be or I had one of my three bleeds in that area. 

Photo of myself at brain injury walk in 2018.

The scalp pain is a significant amount less than it was when I returned home from rehab in 2014. Most of the pain I get is as mentioned before, is from my moody and vindictive programmable shunt valve. Grateful to have survived and that the multiple bleeds I had didn't result in more shunts being put in my brain. 

Dealing with one is enough.

I made a film about my injuries and recovery as a coping mechanism and to help educate as many people as possible about hydrocephalus and brain injury.  

Therapy helped me a lot to deal with the trauma of my experience. I laugh to myself when I think about the moment I was laying in the hospital (see above) with a bandage covering my head, crossed eyes and partially paralyzed from the waist down. I was angry and sad and at the same time realizing, I had to document my experience. 

Artists like myself, are always looking for inspiration for our work....

Here's to several more years brain surgery free!  

Grumpy with a side of cereal at 2:14am

Barometric pressure headaches have returned.....It's been a while since I've gone on an angry rant about my shunt and chronic pain. This week just about everyday, I've had continuous pain from the shunt valve, chiari malformation, distal catheter in my stomach, eye pain and scalp sensitivity near my shunt.  I feel some of this discomfort is from elevated csf pressure in my forehead. Perhaps my shunt is over working again. The good news is, I know it's not obstructed. At least I don't hear the device making noises anymore...

Yesterday, I chose to watch Netflix. I figured maybe watching this for a few hours will take my attention away from my pain issues.

I couldn't focus on drawing, games or reading yesterday because of pain issues.

I was up this morning around 2am for super early breakfast and hoping eating would make the pain less.

This didn't work very well. I went back to sleep after eating only to wake up again later in the morning with the same issues from the last few days.

The crazy temperature changes and super moon earlier this week haven't been helping....

I saw a little bit of the super moon on Tuesday evening while on my way to a support group meeting. I didn't know it was a super moon until I saw the news report later that evening. When I saw the rather large yellow moon around 5:45pm and thought it was really cool, not knowing it was a super moon. I have my calendar marked for the next one.

Alternative Therapies

At the end of last year, I went for a cognitive and physical evaluation to determine what type of accommodations I would need in the event I start working again.  Some of the findings are below:

Restrictions: Right upper extremity weakness; decreased counterbalancing.  Decreased counterbalancing. Significantly below average hand grip strength.  Decreased tolerance to bending head secondary to occasional dizziness.  Gait dysfunction.

Suggested recommendations: Ergonomic chair, supportive walking shoes and more...

I take occasional breaks when volunteering. I notice I get more tired when processing information such as data entry in Microsoft Excel....This also happens when I'm organizing the food pantry closet at the other organization where I volunteer once or twice a month.

And of course, there's the occasional shunt and head pain issues. This week while volunteering, I the head & shunt pain was minimal.  The cold increasingly cold weather the last few days is causing throbbing and pain from my medical device.

Super Mario Brothers 3 from TV.

When home, to distract myself from the discomfort, I turn to the occasional escape through video games. I'm not talking about the classic edition console currently sold in stores. I mean the original 8 Bit system.

A digital vacation from chronic illness helps, along with art
( when I have the energy ) and reading.