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.

Office Supply Battle

Last week, while volunteering at a local nonprofit organization....I got stabbed in the finger with a loose staple which was attached to an envelope I had opened. The staple stab didn't hurt as much as my shunt does when the weather changes.

I mentioned the shunt weather change issues with my new neurosurgeon during my appointment earlier this month.  The new ns had made three attempts to get me to return to the surgeon who did the last shunt revision I had in 2014.

I explained to him several times that I couldn't return to the previous surgeon because I had fired him for several reasons such as not taking any of my shunt complaints seriously ( when it was falling apart inside my body in 2014) misreading of my xrays and misdiagnosis. He had said I had heartburn when I told him I could taste cerebral spinal fluid in my mouth and could feel csf leaking out of the distal catheter in my abdomen....

Now there are pieces of my old shunt are floating around my peritoneal cavity and lodged inside the right side of my neck.

Going back to him was not an option. He ended up getting animated in one of my films.

I told the new surgeon what type of shunt I had and faxed him a copy of my medical history with all of my previous neurosurgeons and copies of my operative reports from 2009 - 2014.

Fax thru email is the best thing ever....

Copies were made in the doctors office of my x rays and CT and MRI scans which I have on CDs.

Overall, the appointment went well and I felt my voice was heard.

The surgeon told me I don't have one neurosurgeon though. When I have to have a revision, it's usually the person who is available when you get to the hospital Emergency Room that will do the surgery.

So I made sure to emphasize what had happened in my shunt revisions in 2009 and 2014 and how it wasn't going to be repeated. EVER.

This is the one thing I've become super paranoid about since my injuries in 2014.

I don't want anyone operating on me again unless it's absolutely necessary.

I'd rather have a cut finger wrapped in a bandaid then have to endure more brain surgery.

When I volunteer now, I'm carrying a small first aid kit in the event of more battles with office supplies....or anything else I encounter in the field.

About brain time

I finally got an appointment to see a new neurosurgeon. I've been calling their offices for a little over six months. I kept getting the 'run around' with whichever receptionist was on the other end of the phone. For some reason each time I called, the person on the other end was very short with me and dismissive. In other words "well, if you're not having surgery, then you don't need to see the neurosurgeon.'

The only different this time, was I had a referral to see a neurosurgeon from my neurologist.

Rainbow from street.

I wasn't about to take 'no' for an answer, either. The last time I didn't have a neurosurgeon ( and whoever was available performed surgery ) my shunt was placed on the wrong side of my brain and stayed like that for five years until it was finally repaired (twice) in 2014.

I don't want to have surgery again unless it's absolutely necessary.

I also have some trust issues I'm still working on...

Yay!! For me for being persistent! I also saw a rainbow earlier in the week before I achieved success in getting my Dr. appointment.

I saw this as a good omen....

Brain Sandwich

Brain shaped sandwiches at this months support group meeting,

 

Earlier this month, I attended this years Brain Injury Walk with my friends and family. It's always nice to see such a large group of people who are impacted by brain injury. Every other year the brain injury support group has their logo ( a walking brain ) paired with a shirt and hat.

I also attended my local brain injury support group earlier this week. There were brain shaped sandwiches and salad.

Myself at brain injury walk 2018.

We had a great discussion about some of our goals and things we'd like for the future. Some people shared their information about dealing with the comments of people who just don't get that  what it's like to deal with a brain injury. With a brain injury, it is invisible and often times, people just think that there's nothing wrong with you since you don't look sick. I had someone tell me this recently.  You don't have to look sick to be in pain. One of the reasons I made a film about my brain injury experience was to educate others about the impact this type of injury can have on individuals and people around them.

Close up of brain injury 2018 logo hat. 

Attending support groups and these walk events for me is therapeutic and I learn a lot from others I meet also impact by brain injury. There are lots of survivors who feel misunderstood. I find comfort in being able to surround myself with others who have empathy for the injuries you have an can relate.

My head and Day of Caring

On one weekend in September, I volunteered with my local United Way assisting with their Day of Caring event in my area. This was a great chance for me to get out of the house. I had the usual head and shunt issues as I've been having for months now. I'm glad was able help on that day and fortunate enough to travel despite having head discomfort.

A group shot of myself with several other volunteers at United Way last month.

Soon I will see a neurosurgeon about future treatment for my shunt. I have apprehensions about this from past experience with doctors not taking me seriously in the past. So we'll see. I may even give this new neurosurgeon a copy of my film, Shunt Chronicles (2015) for repeated viewing so he knows what NOT to do.