Tinnutus and the sculpture

My visit to see Journey to Freedom in 2021

This morning I had an episode of tinnitus in my right ear. I started having tinnitus after my brain injuries in 2014.  This was jarring to experience as is hasn't occurred in a few months.  Totally felt like I had been hit inside the head on my right side with a whoosing sound moving from the inside of my right ear through the middle of my head. 

It lasted for what felt like a very long five minutes and was quite disorienting. The last few days I have been having balance issues and my feet have been getting confused. 

These symptoms are just one of many that I and millions of others experience after surviving a brain injury.                                                           

Recently, I was able to see the Harriet Tubman Journey to Freedom Sculpture which was making a stop in my area. The sculpture will be touring several states thru 2023.  Harriet Tubman is also a traumatic brain injury survivor.   

palm trees and metal

I've discovered a new Nintendo game, Hudson's Adventure Island II. I love characters, music, and the game play. They even have happy game over music. It's just a joy and fun to play this and a good escape from my chronic pain issues. 

My shunt has been behaving itself the last few days. I had some double vision this morning when I turned my head, occasionally my eyes become misaligned. TMJ issues today along with tinnitus. I attempted to build a puzzle over the weekend and came to realization I needed more table space. I wonder how my new brain will process constructing a puzzle. Haven't done one in years prior to my injuries. 

I was at a doctor's appointment recently and the nurse commented on my medical ID bracelet. She told me she doesn't see them very often and that it was a good idea for me to be responsible for my health. There are several places where you can purchase one here are some examples: 

Medical Alert Foundation 

Medical Alert Bracelets

Lauren's Hope

American Medical ID

brain walk '21 and turtles

 The Brain Injury walk I and many others usually participate in this year was cancelled because of the pandemic. Hopefully next year, we'll be able to walk in person for brain injury awareness. Last Saturday was the one day in a while where I didn't have any shunt or chronic pain from my injuries. My medical device has been reacting to the weather and whatever it feels like doing on that particular day. Monday,  10/12 I had nausea from the distal catheter part of my shunt into the evening at the same time as shunt and head pain. This made me nervous, angry and sad as I feared the shunt was getting obstructed again. Then the nausea went away by the following day. 

As of today, I have pressure in my forehead, dizziness, right eye pain and of course balance issues. Shunt malfuncioning symptoms include severe vomiting and headache, and the inability to walk and gait issues. For that reason, I was worried on Monday and relieved when things got better. With past shunt revisions, I didn't have any indication my shunt was obtructed. I would just wake up the next day and had have all the symptoms. Anyone who has a shunt or a family memeber with one will tell you how unpredictable this thing is. You just don't know when it will stop working.  

SNES Ninja Turtles IV
A fun escape during these uncertain times. 

When shunt madness makes me sad and angry, I escape through art, scrapbooking, movies like National Treasure or video games like the Super Nintendo classic, Turtles in Time.

One day this week so far....

Right eye pain, nausea, pain on sides of head and shunt valve pain for the last few weeks. Friday 7/17 there was a thunderstorm which only added to the discomfort with my medical device. No pain yesterday which was a small miracle and welcome relief.  Today I have some shunt issues with the heat and pressure in my forehead. The pandemic has made me draw more which makes me happy and distracts me even for a minute from chronic pain issues when they arise. Alternative therapies for coping with pain are great when they work. During long periods of pain I often get sad and angry.  It's a reminder of what happened to my nervous system and how things will not be the same again.  Sometimes I'm happy and grateful to have survived other times I cry because of how it's changed everything. 

outside

Pain issues have been minimal the last week, which is a nice change for once. Recently, I had a video appointment with my neurologist and she suggested I try and put pain cream on parts of my head and  when I feel discomfort from my shunt or elevated csf pressure in my forehead. I'll try this and we'll see what happens.

Less pain, more dizziness for me this last week.  I experience this when move my head from side to side or when I am sitting, standing and everything else. Now that it's getting warmer and more humid outside my shunt ( which is magnetic) responds to the warmer temperatures. If I don't wear a hat outside when it's very hot and humid, it can cause different issues with my medical device like fainting and disorientation.

I can't volunteer because of the pandemic. Like everyone else, I'm home unless I make a trip for something essential like to the grocery store. My local Stop and Shop has a robot,  I think it's name is Bob or something... The robot has made me paranoid because of my shunt. I don't feel magnetic waves off of the robot like I do when I walk by a pest repeller on a wall.  I avoid the grocery store robot as much as possible. At one point, I thought it was following me in the produce section....

The pandemic has made me (along with millions of other people) anxious about going anywhere, outside. I can only wear a mask to cover my nose and mouth for short amount of time.

My local brain injury association has free webinars to help people cope with this pandemic.

Another great way to help all of us who need it now:

Brain Injury Alliance New Jersey Webinars

socks

Yesterday, I almost fell trying to get dressed. My right crossed over the left leg, I caught myself when I landed halfway between the floor and the side of my bed.  Dizziness and walking, and turning issues have been the brain injury theme for me this week.  I’ve heard from other stroke/brain injury survivors the recovery process is a marathon, not a sprint.  Some parts of your life return to the way they were before your injury, other things do not.

Everything in your life is changed in some way.  Some things are just never the same again.

Because of the walking issues I was having yesterday, I decided to stay in one place and not walk as much. I ended up drawing for several hours yesterday. I haven’t done an hours long drawing session in a while because I’ve struggled with energy and concentration issues.

It was wonderful to escape for a little bit and forget for small amount of time the balance issues.

My cat, Stella, sometimes has walking issues when she is running. Yesterday, she was running into my room and she almost tripped over her two front legs.

Besides other stroke survivors, it seems my cat can relate as well.

I haven’t been able to volunteer for two months because of the pandemic. Some of the help needed requires lifting boxes, which I cannot do. This makes me sad, although I know I’ll be back saving the world through volunteering again eventually.

I’ve found music to help with both coping with the pandemic and my gait/pain issues. Happy songs include this classic from Oliver & Company ( NYC in the 1980s with Billy Joel) and Anastasia (1997)

dizzy with a side of music

I learned earlier this week, I have a relative who had a stroke; he is now home recovering and doing better. I’ve been having walking issues today and almost fell twice. I’ve had right leg crossing in front of the left leg randomly, which happens sometimes and not too often. Then today I experienced something, which never happens, my left leg crossed in front of my right leg when I was walking.

The left leg almost never does this, so it was especially odd. Shunt and scalp pain on the left side of my scalp once this morning around 2am. Followed by some scalp pain in the top right corner of my scalp this afternoon at 1:37pm.

The usual shunt and scalp pain issues could be from a variety of things such as barometric pressure, phases of the moon, and rain/snow…

These stay at home orders during the pandemic remind me of when I came home from rehab after my brain injuries in April 2014. I couldn't drive for a year and 12 days because of the damage to my right eye. The only difference now is I no longer have double vision and can drive.

During these uncertain times this Altice One commercial brings me joy: https://www.youtube.com/watch?v=a1lVkezaQ10

6 on 6

Today, March 6, 2020 marks 6 years since I survived multiple brain injuries during a shunt revision on 3/6/14.  Today is my golden brain birthday - six years on the 6th day of March.  I had two shunt revision surgeries during 2014.  The second was when the rest of my shunt was finally repaired in May 2014.

After my brain injuries on 3/6/14.

Overall, I had a great brain birthday today. I had no chronic or shunt pain issues. The whole day and into the evening.

During the day today, I tried a Virtual Reality simulation at my local mall. I was on a swing somewhere in Asia. Very cool experience there were times when I got a little dizzy going up high into the air.

During the holidays in December 2019. 

6 Years surviving multiple brain injuries.

I also enjoyed some arcade games today. Finally, I made some new characters at the lego store and then returned home and enjoyed my cupcake. I didn't use a number candle this year, just because of last year's experience.

Blowing out my candle today made me hope to have more pain free days and of course, no more shunt revisions....I made a film about my brain injuries in 2014.

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.

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...

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.

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.

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...

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....

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:

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....