My brain on paper

On 1/19/16, 1/26/16 and 2/2/16, I received psycho-education testing to determine the level of brain damage after my multiple injuries in March 2014.  Each session was two hours long and there were three in total.

According to the tests I took which included Benton Visual Retention Test, Haptic Visual Discrimination Test and the Woodcock-Johnson Visual Education Battery exams I scored at different ranges. Overall,  there's been a slight improvement in my IQ since 2014. Still having math and some memory issues, but that was always the case I just need extended time.

I'm still unable to work right now and I can take Adult Education Courses at Rockland BOCES which will be paid for by Rockland County Association for Learning Disabilities.

I can receive employment assistance through ACCESS-VR to help with interview skills and job placement.

I'm still dealing with brain and nerve pain as a result of my injuries. Trying to figure out how to deal with the pain. The shunt causes me pain more than it did before most likely because of damage and two conditions I have now: slit ventricle syndrome and chiari malformation. Both were as a result of my shunt being place on the wrong side of my brain.  I learned through online brain injury and hydrocephalus support groups that programmable shunt valves can be affected by the weather. I've noticed when it gets cold outside (depending on the barometric pressure) I have pain on the shunt valve and on the distal catheter in my brain. Because I am hyper sensitive now because of what happened to me, I can hear the shunt as well and feel when csf gets re-absorbed into my abdomen.  The csf burns.

As mentioned in previous posts, I can hear my blood pressure behind my right eye.

It's kind of cool and very bizarre at the same time.

Three Days and the Weather

The last three days the shunt has been causing me pain and throbbing frequently. This is followed by over drainage in my forehead, pain in the back of my head ( I suspect from the Chiari Malformation or from the Slit Ventricle Syndrome or both ). Pain medication doesn't alleviate the sensations I feel. I've also been very tired, more so than usual and I think it's again because of the shunt. Everything is working the way it should be.  I do believe the pain and sensations I feel could be due to the weather.  The temperature where I live has dropped quite a bit since the beginning of January.  In November and December we were spoiled with Spring like weather in the winter time with temperatures at 60 degrees.  Now it's January and the temperature has plummeted to 15 degrees.

I believe there may be a link to the weather and my programmable shunt valve. 

Found other people talking about the very same thing I am:

Life with a severely disabled child.

Barometric Pressure and VP Shunts

I would ask my brain doctor about this but.... Oh wait...That's right, I can't find one who will listen to me. 

The search for a competent doctor continues...

In the meantime, I'm finding ways to keep my mind off of my shunt discomfort.  I am grateful the it's actually working correctly.

Coping Skills

Read an article today about how some people deal with adversity and find creative ways of coping.   I originally made a film about my shunt not working and my movie changed because of things which happened while I was in the operating room.

Sometimes people have disassociated or separated themselves in some way emotionally, psychologically from the situation they are in.

I've looked in on the lives and stories of my characters through the years and it made sense for me to disassociate from my own situation and tell my own story. Doing so allowed me to filter through my own feelings.

The surprising benefits of going through hard times can be found here.

left v.s. right

Since my brain injuries in March 2014 I've been having occasional pain on the left side of my brain and in the back of my head by my cerebellum. The pain in the back of my head I've been told is from the type 1 chiari malformation I have, a result of my shunt over draining.

I figured out the pain on the left side of my brain and tingling sensations on the top two corners of my head are because my nervous system is ''looking'' for the shunt to be on the left side.  The tingling feeling I have is from what I suspect is body believing it's still about to have a stroke again....

Prior to all of this, I've always slept on my right side where my shunt was, it's a comfort thing.  Yet I noticed I've been sleeping on my left side. I believe this is because the shunt was on that side of my brain which led me to sleep on that side.  Because of this, I've decided to get used to sleeping on the right side again because that's where my shunt is now. I feel once I've convinced my body the shunt is where it's suppose to be, the pain I've been feeling on the left side of my brain and tingling sensations should stop.

I've tried this for about two weeks now and I've noticed the pain on the left side of my brain is less.
Much better solution than being given various medications which don't work and alter my mood.

Mirtazapine

Saw two neurologists on Tuesday. It was a marathon. I had an appointment with one in the morning, then learned upon returning home at 11am the doctor who I was suppose to see on Wednesday at 5pm wasn't going to be available and they had rescheduled me for Tuesday at 2pm.

I had told the 1st neurologist I've been having pains and throbbing in the left, right and back of my head.  I also have tingling sensations at the top right and left corner of my head.  This has been going on since before March 2014.

He prescribed me an anti-depressant, Mirtazapine to help with sleep.

In the afternoon, I went to the 2nd appointment in the city. The doctor I saw told me the pains I was feeling was from depression, even after I had mentioned how the pain is related to what happened to me in March 2014. I feel it will take some time for the pain to go away.

Apparently no one (besides myself) wants to talk about the elephant in the room. In my case, the elephant is wearing sun glasses and a shirt with palm trees. (I'd rather be somewhere warm)

I went home and took half a Mirtazapine before going to bed.

As a result, I had severe mood swings and became extremely depressed right away after taking half a pill.

Before taking the prescribed medication, I wasn't depressed. If anything, my mood has been getting better depending on the pain I feel during the day.

Over the summer, I was prescribed Celexa by a neurologist. It made the room spin around.

No more drugs.

I haven't had a CT, MRI or X-Ray done of my shunt since 2014.  I'll need to find a doctor who will agree to do one.  I'm suppose to have one once a year. The two neurologists whom I saw this week told me an X-Ray, MRI and or CT scan wasn't necessary, just take prescribed anti-depressant.

November

I have an appointment with a new neurologist in the middle of next month in the city. The social worker I saw with from September 2014 until May 2015 said she would speak to him/her prior to me my appointment. I had expressed my concern about being ignored by various doctors from 2009-2014 and as a result I have trust issues.

From what I was told I'm not going to have any more shunt revisions, yet it was never explained why. I'll have to inquire about this when I see him next month.

My last doctor withheld information from me regarding what was going on with my shunt.

This will not happen again.

Since I'm not having surgery I don't need to see a neurosurgeon. My new neurologist will have to acknowledge what happened to me as no medical professional has done so yet.

I believe some medical professionals don't understand this concept.

September

September is Hydrocephalus Awareness Month. Millions of people are affected by this chronic medical condition.

Several organizations are dedicated to spreading awareness, below are some examples:

Pediatric Hydrocephalus Foundation

Hydrocephalus Association

Remember September

Hydro Bears