vitamins and then some

 I been prescribed a variety of medications from my neurologist for the chronic pain I have experienced from my injuries in 2014. Nothing worked in alleviating my head and shunt pain issues. I recently started taking an extra magnesium supplement when I have chronic head pain. The pain is from the injuries I had in 2014. In 2009, when my shunt was moved the 1st time - It caused a chiari malformation by my cerebellum. Since then, I get headaches in the back of my head. After my injuries in 2014, I have pain on the top of my scalp (both left and right side).

Taking an extra magnesium was recommended to me after a visit to a local vitamin store. This helps alleviate my the chronic pain in my head. However, it doesn't stop the shunt, distal catheter or occasional nausea.  The pain relief is temporary. I take the extra supplement when I need to.

At least this is an improvement. Magnesium and chronic pain article.

I asked my neurologist for a referral to see a neurosurgeon. I have questions I would like to ask the doctor. I also wanted to establish a relationship with the hospital and get a 2nd backup neurosurgeon. In 2009, I had surgery and my doctor wasn't available. I was given the next available doctor and my shunt was put on the wrong side of my brain. I almost died.

I haven't see a neurosurgeon since I fired the last one in 2014. 

Since it's October and almost Halloween, I decided to introduce my cat to The Twilight Zone. He falls asleep. It's a good distraction from my occasional shunt issues.

Fall again

People fall on sidewalks all the time.

Last week, I fell on a sidewalk. It wasn't from my balance or walking issues, the sidewalk was uneven. I landed on my side and bruised my knee and elbow.  

 It's gotten better since then.

I'm glad I didn't hit my head or break my glasses. 

The last time I made a crash landing on the floor, was in August 2023. I lost my balance, twirled and hit the floor again, on my right side. My glasses flew to my right on the floor unbroken.

I saw the ophthalmologist in June who corrected my eyesight in 2015. I still have occasional double vision. I still have pain behind my eyes from my injuries.

My shunt has been behaving itself until the weather gets warmer, it rains or the phases of the moon changes.

For some reason today, music from the film, Suzume have been on repeat inside my head.

Sun, moon and a garden

 Before April's eclipse, I was concerned my shunt would have the same reaction it did during the eclipse in 2017.  I was pleasantly surprised this year. I had a some valve pain and shunt adjustment issues (nausea and pain from the catheter) the day before and a little during the morning of the eclipse. It wasn't as bad as the experience I had in 2017 where I felt like my head and shunt were being squished by gravity. 

Seeing the eclipse was exciting and a little bittersweet, as it made me think about my late cat, Stella (2000-2023). We  watched the eclipse in 2017 together. The fun part of the 2024 eclipse, I had a new friend ( left ) who I believe was trying to watching something out the window that day.

 Later during the week, I went with a friend to a flower garden (below right). Being outside was great even though it was very windy out that day. The wind bothered my shunt and I was still able to enjoy being outdoors.

For some reason today, songs from The Hunchback of Notre Dame (1996) are in my head...

 

10 years later, part II

This week, I had pain behind both eyes, nausea and pain along the distal catheter in my head and down my neck. My shunt is working, just making adjustments and my past injuries causing chronic pain... I had a good cry about this one afternoon. I don't speak for everyone who has an  unruly medical device and/or chronic pain - Sometimes you just have bad days and you cry a lot. That was me for one day last week.

Then I played Star Fox (1993) on Super Nintendo and it made me smile. I felt accomplished when I beat one of the levels. The end title music is wonderful.

 In 2009, after my shunt was moved to the left side of brain I changed doctors and saw another neurosurgeon who I thought would listen to me. We'll call him Dr. Potato ( Not to be confused with Dr. Potato head who is smarter than this physician)  In 2011, I had a shunt revision and Dr. Potato moved my shunt valve to the right side of my brain, leaving the distal catheter on the left side. 

In 2013, my shunt began to fall apart inside my body ( unknown to me ) except around November 2013, I started to not have an appetite due tot he distal catheter being broken in my stomach. I also started to have vibrations inside my head which would indicate part of the shunt is broken ( a medical emergency by the way ).

Again, this went ignored by Dr. Potato. Until I insisted on doing a shunt revision where my shunt stopped working during surgery and I had two strokes, a brain hemorrhage and and Traumatic Brain Injury. 

Like anyone who has experienced a traumatic event and/or living with a chronic illness... I still experience the following:

Survivor's Guilt

Chronic Pain 

Brain Damage

Like every brain anniversary, I enjoy something sweet. This year, I decided to be adventurous and had a slice of cheesecake.  I also treated myself to a new friend ( How I feel when I experience chronic pain). 

Additionally, I treated myself to a new game, which I've heard is a good memory game...

I made a film about my injuries. Again, I am just one of many people who has a cerebral shunt, chronic illness and has experienced a traumatic event.  My film can be viewed here.

10 years later, part 1

I woke up this morning with the theme from Teenage Mutant Ninja Turtles: Turtles in Time (SNES) in my head. I didn't have much luck playing Mega Man X due to chronic pain issues. I was more successful with Super Mario Bro 2. I got a lot of satisfaction with throwing vegetables at various characters...

This year, 2024 marks ten years since I survived multiple brain injuries while having a shunt revision surgery in March 2014. The shunt drama began in April 2009, a month before I was suppose to finish my first graduate degree in May 2009. A late friend of my mine would refer to this as Murphy's Law.  On April 7, 2009 my shunt became obstructed and stopped working. I went  to the hospital for emergency surgery.  

 I'm just one of many people who has a shunt in my brain and has a chronic illness. 

When I was in the hospital in April 2009, I was taken to the operating room for surgery. During the surgery, my shunt was put in backwards. I suspect this was because the x ray was in the wrong way and no one checked this. 

The reason I believe my x ray was in backwards during the surgery was because of what the surgeon wrote in the operative report:

 The patient's right side of the head was shaved and left side as well and the right side of the neck was shaved and then prepped.  There were two scalp incisions, 1 on the right side, 1 on the left side and the bur hole had been placed in the left side. Both incisions were opened and the shunt system was identified.

 

(LEFT) X Ray image of my shunt placement birth to 2009.

Upon waking up after the surgery, I felt my lungs burning as I had stopped breathing. I could still feel the intubation tube in my throat, as they had used an large size.

I'm a petite person, I need small intubation tubes. 

Before I've had any shunt revision surgery, the anesthesiologist is suppose to check you before you go in for surgery to make sure they know what size tube to use. 

No one saw me before the surgery. 

After surgery, I couldn't breathe because I could still feel the tube in my throat and struggled to get air into my lungs. After what seemed like a very long time, I finally was able to breathe on my own with assistance from a nurse. 

 ( LEFT ) incorrect shunt placement X Ray image (2009-2014)

The surgeon who performed the surgery never saw or spoke to me again. 

 I was never given antibiotics after surgery and developed an infection.

Upon coming back for a follow up appointment, I saw an assistant who gave me medication for the infection.

I developed a chiari malformation type 1 by my cerebellum after this surgery. I suspect because my brain almost herniated after this surgery. 

I now get headaches in the back of my head. If I lay on my back, putting pressure on the back of my head, I will have headache pain on the top my head ( both left and right ) among other issues....

Since this doctor had refused to see me, I changed hospitals and found another doctor.

And that was only the beginning...

 

Mermaids and the some

No chronic pain issues this week. Today is mild. 

In October I experience a variety of the following:

A day when head and shunt pain didn't go away for three hours, without medication. I had the usual pain behind both eyes.  I try not to take pain reliever unless I really need to. 

Taking regular over the counter pain reliever usually reduces the pain I feel in my head and neck. It doesn't always eliminate it completely. 

Individuals and families with an unruly medical device and chronic illness have a variety of symptoms. I'm just one of many people.  

Today, I enjoyed returning to Nintendo Therapy which included Super Mario World (SNES) and The Little Mermaid (NES)  I was able to focus for like one hour despite having some head pain. 

Let's not forget other coping mechanisms like Music by Joe Hisaishi and reading...

in the summer

September is hydrocephalus awareness month.  During the summer, I attended a Pediatric Hydrocephalus Conference. It was great meeting other individuals and families who are living with hydrocephalus.   Always nice to talk with others who truly understand what it's like to live with this chronic illness. 

It was 10 years ago this month that I started making a short film about my shunt as it was doing some weird things inside my head. At the time, I didn't' know it was on the wrong side of my brain. I later figured this out on my own in March 2014. 

Whenever I talk about my brain injuries with anyone, I always emphasize how you have to listen to your gut, as it doesn't lie to you. Had I not listened to my body back in 2013 when I felt vibrations inside my head and on my spine, I would not be here. Had I not advocated for myself and insisted my neurosurgeon do surgery, I would not be here.  I later fired this doctor ( since he wasn't taking my complaints seriously ) and he got animated in my film. I always tell people if you can't advocate for yourself, then get someone else to do this on your behalf.

Like any brain injury survivor, you're just never the same afterwards. I've been having walking issues again and I'm back in physical therapy.  With chronic pain issues in my head and leg this week, I found myself again listening to movie soundtracks such as Treasure Planet (2002), Blue Beetle (2023) and Sailor Stars (1997).