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.

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...

 

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). 

Several Days

For a week and a half or what feels like longer.  I've experienced:

Pain behind both eyes.

Pain from shunt valve and distal catheter followed by nausea

Dizziness

Ringing in my right ear

Pain on top of scalp both left and right sides.

Today (5/7) I am feeling better.

Lately, in order to distract myself, I've starting reading various books such as Bunnicula,  manga and anything else I can find.

And of course, the Reading Rainbow theme song has been in my head....

May is Stroke Awareness month.