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.

HAM 2018

One of my brain injury awareness shirts.

X Ray of my shunt in 2014.

September is Hydrocephalus Awareness Month (HAM). I have collection of brain injury shirts I've acquired over the last few years from Teespring.com. Today, I have head issues as usual. My medical device continues to adjust each time I move my head. Sometimes when I'm moving from crouching down near the floor to standing up I get a rush inside my head and dizziness. This also happens when I move my head from side to side. I try not to take pain medication everyday only when I feel I really need something. I also have pain behind my right ear today....fragments of my old shunt are still there and they're in my abdomen too...Those pieces couldn't be removed.

Earlier this summer, I made a short film, Life with a Shunt (2018) about what it's like for me to live with a cerebral shunt inside my brain. My experience doesn't reflect every one's daily life with one of these medical devices. I made this film, because of the response I received from my previous film, Shunt Chronicles: My brain, art and school (2015) Someone had said mentioned to me they didn't get a sense of what it was like to have a brain shunt. I wasn't about to add an extra scene into the film, as I would have to get it transcribed again for new subtitles.

My battle scars from shunt surgeries in 2014.

I try to educate as many people as I can about how shunts can be put in the wrong way. I wasn't aware this could happened until I experienced this in 2014. Since then, I've heard the same story from a friend, who had a patient ( an older man) who the same thing happened to him. She was helping him with balance issues (she's an Occupational Therapist) and once his shunt was returned to where it belonged, his balance issues improved. I have feeling shunt misplacement may happen more often then people realize...

As mentioned before, I would like better treatment options. More reliable shunts, like ones with expiration dates so you know when surgery might be needed. I mean, food and beverages have expiration/sell buy dates...why not medical devices? Maybe as they bring in more robots in to the operating room, mistakes will be reduced...?

2 weeks and 3 days

Butterfly seen in July trip to Hersey Park.

This summer has been the most uncomfortable for my shunt. I don't remember the previous year being this awkward. Ever since the weather got more humid, I've had consistent nausea, shunt, scalp pain. In addition to right eye pain. I did however, have two weeks in June and three days this month were everything was perfect. There were rainbows and butterflies happily dancing inside my head. ( I use this as an example because seeing rainbows and butterflies outside makes me happy). Not feeling well from my injuries and shunt often brings down my mood and makes me less social and isolating. Sometimes I just want to stay home and read/draw because having to interact with a group of people is information overload on my brain.

My cat, Stella and I 

When the days are really bad, I'll refer to this photo

When I meet my new neurosurgeon, I'll inquire about him checking the settings on my shunt. Most of my pain issues vary from recovering from my injuries to the shunt adjusting and readjusting every time I move my head. Checking the settings would make me feel better knowing it's on the level it should be.

I do wish I could have a non programmable shunt valve. Unfortunately, there isn't much I can do about this.

Non Adventures in brain injury and medical device land continues....

Movies and then some...

As expected, I will feel better when the fall arrives. The heat and humidity has caused me both neck, and scalp pain most of the summer. I did have a good two weeks before the weather reached above 90. I'm still trying to figure out how to sleep without disrupting my cerebral shunt or the chiari malformation type I from my injuries. I can't sleep upside down, because I'm not a bat.  There are pillows for neck support which I'm looking into getting....

I went to see Incredibles 2 earlier this month with a friend. There was a strobe light warning before the movie and I don't have a history of seizures, prior or after my brain injuries. Just to be safe, I closed my eyes or looked away during the scenes which included flashing lights. After the film, I felt a little dizzy and when I sat down again while eating, (I was in one of those bar stool chairs ) my sense of space was off and I felt awkward being elevated. This feeling was only temporary, I attribute this to the strobe lighting during the movie. Even though there was a warning about a seizure triggers, it made me wonder why the studio who made the film, would even include this effect at all. Overall, I enjoyed the movie and had a chance to get out for a few hours.

Sometime in 2015, my phone's led light flickered for a second, it was about two feet away from where I was sitting.  I felt a throbbing sensation in the back of my head. This only happened once, although it made me wonder if this reaction was related to my brain injuries.