Tag Archives: TBI

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…..