And then the doctor said...

My neurologist said my shunt is working. I had concerns about it misbehaving for three weeks and had inquired about having CT and or a shunt series done. She had told me this wasn't needed unless it was absolutely necessary. Unless my shunt is obstructed and I'm incapacitated and vomiting on the floor, then a CT scan and shunt series is needed for obvious reasons. Otherwise, I wasn't getting one.

I had an epiphany while visiting my neurologist.

I realized the reason (besides the one mentioned above) scans aren't necessary right now is because these doctors know my shunt is working and it's on the correct side of my brain. I've come to this conclusion because with my former neurosurgeon (we'll call Dr. X) who I fired and animated in one of my films...Prior to my injuries in 2014, I was having a MRI every six months.

I'm surprised I didn't glow pink from all of the scans...

Dr. X, I believe was ordering the tests because he knew my shunt was in the wrong way and why he was monitoring it so closely. Now that my shunt's been returned to the correct location, there's no need to be 'zapped' so frequently. The medical professionals around me know what happened to me in 2014 and why. They also realize my medical device is working as it should be.

My neurologist did note during my appointment there is weakness on one side of my body. Something she hadn't seen since I started seeing her in 2015.  For the next six months, I'll have physical therapy until I see her again in October.

She was happy to hear my shunt and head pain had stopped for the first time in three weeks. I'm also convinced these doctors know programmable shunt valves are temperamental and react to just about everything between the weather, stress, other magnets and various amounts of csf fluid.

The shunt and scalp pain has been minimal this week. Not sure yet when the top left corner of my scalp throbbing will go away yet. Sometimes it's there and sometimes it isn't....so we'll see.

My medical device can be as temperamental as it wants as long as it means I don't have to have surgery again.

3 weeks and some colored pencils

Since the week of March 11, my shunt has been misbehaving. My medical device is working, just acting like an unruly child. The changing temperatures outside are not helping. Additionally, my shunt adjusts each time I move my head and I can feel when the device is processing a lot of csf fluid. When this happens, there is pain on the shunt valve and through the distal catheter at the top of my head.  I've felt nausea some days from the catheter in my stomach.  Then there's the dizziness when I am walking sometimes...Yesterday the discomfort and pain was making me nervous because I'm always trying to pay attention to whether the shunt is failing or not. It's been five years and so far things are going well. There are times like these when I get uncomfortable and with good reason...

If it's not one thing like the shunt valve pain, then it's pain from what I suspect is still scar tissue from my injuries in 2014 on the left side of my head. This was gone for a while and then occasionally re-appears at random parts of the day. It's like my scalp is still searching for pieces of my shunt on the left side of my head. There are family issues going on too, which I'm not going to get into....totally not helping the situation.  

To distract myself from the head issues and everything else...My local library has a coloring therapy group for adults.  Just nice to sit with a few people, enjoy some tea and color various designs. This reminds me of a book I read called Zentangle, where you can create drawings which create a calming affect.  

I just hope my head and shunt pain diminishes soon. It's always a challenge dealing with a chronic illness like hydrocephalus and chronic pain, as any family or individual will tell you.  If anything, I feel like pulling out the short hair in my head out of frustration dealing with my shunt...Not knowing what it's going to do each day or hour.

In the meantime, I see my neurologist soon and perhaps this will lead to CT scans...

Update as of 3/20/19 - shunt valve pain all night with pain in my right eye. The many joys of living with hydrocephalus.....

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....