Once more with feeling....again

For the last two months, I've had consistent pain from both my shunt and around different parts of my brain. I'm not sure what to do in order to deal with the discomfort.  Pain medication doesn't work.   However, I get scared when I feel pain like this.

The pain in different parts of my head from nerves and muscles may be scar tissue healing itself form the injuries I had. I believe this to be the possible explanation.

For the last two months I've had the following:

February 2016

2/2/16 – Felt fluid buildup at base of spinal cord. Backup of CSF? While in bed. Had issues with sitting up because of lower back discomfort.

2/6/16 – Pain, swelling, tingling sessions on left side of brain where ventricular catheter used to be and on top right corner of head.  Felt pains in abdomen, distal catheter and in urethra in the morning.

2/9/16 – Pain on top right corner of head at 4am with pains in distal catheter while in bed.

2/18/16 – Swelling, sharp pains on left side and tingling pain on top right corner of head both in the morning and afternoon.

2/19/16 – Pressure in forehead during evening.

2/24/16- Pain in back of head, and forehead around 6:33pm.  Nausea.

2/28/16 – Tingling, sharp pains on top right corner of head during afternoon hours after 12pm. Pain on left side of brain in the early morning.

2/29/16 – Pain and tingling on top right corner of head in afternoon/evening hours at around 6pm.

March 2016

*The following symptoms have continued each day at different times during the day:

*Pain on shunt valve, feelings of fluid moving slowly behind right ear. I can feel the shunt over draining and I have pain in my urethra.  Since February, I’ve had pains in different parts of my head specifically in the back of my head and top left and right corners of my head.

3/18/16 – Pain on shunt valve multiple times in the morning and afternoon hours. Pain when moving head from side to side. Pain and tingling at top of head on right and left corners of head in the afternoon. Pain from shunt on top of the valve and in the stomach/abdomen.  Throbbing and pain on top left side of head.

3/23/16 - Pain on shunt valve multiple times specifically during the afternoon around 3:43pm.  Dizziness in forehead during early afternoon 12pm-3pm.  Felt light headed and dizzy with pains in abdomen/stomach. Throbbing and pain on top left side of head. 

3/24/16 – Pain, throbbing in distal catheter in abdomen at 1:04am, pain behind right ear throbbing on distal catheter. Sharp pains on left side of head and on shunt valve multiple times while trying to sleep between 9pm-12am.  Pain at top, back of head when moving head from side to side. Cannot sleep on right side due to pain in distal catheter behind right ear.

Anniversaries, Part II

Today is the one year anniversary of the eye surgery I had to correct my vision as a result of my multiple brain injuries in March 2014.  I've been driving for a year and I've gotten more comfortable in the car.

I'm still trying to navigate how to effectively deal with the pain from the injuries I had. I have throbbing pain on the left side of my brain (where my shunt used to be) Additionally, the shunt causes pain as well and has a mind of its own. There's throbbing in the back of my head by my cerebellum (from the chiari malformation from the shunt over-draining from 2009-2014) Tingling on the top right and left sides of my head. There are pains from the distal catheter portion of my shunt in my stomach/abdomen.  The distal catheter pumps csf fluid into my abdomen, it burns. I hear the shunt too, only in my right, ear where I am tone deaf.

Pain medication does nothing to alleviate my symptoms. The neurologist I've been seeing since 2014, thinks the pain I feel in my head is because I'm depressed. I know this is not the case. The medication I was given to treat my 'depression' does nothing to alleviate my symptoms.  The good news is he was concerned about me when I saw him earlier this month. I'm convinced when I see him again in June, he'll finally see my symptoms are not from "depression' and are a direct result of the trauma I experienced in 2014.

Signed copies of the film based on my brain injuries is available here.

2nd

Anniversaries can be both weird or not so weird. Today it's been two years since my multiple brain injuries. I consider myself very fortunate that I didn't develop hydrocephalus ex-vacuo as a result of my injuries. The first anniversary was a challenge to get through as I still had double vision and was anticipating my upcoming eye muscle surgery on March 19, 2015.  My misaligned eyes was a reminder of what had happened to me.  However, the second anniversary was easier mostly due to my eyesight being corrected and I'm feeling better than I was last year (when I still had numbness in my muscles and tendons. )

Still trying figure out a way to deal with the pain I feel as a result of the injuries I had.  Since 2014, I've had pain in the back of my head by my cerebellum due to the chiari malformation I acquired from the shunt revision in 2009.  I also have slit ventricle syndrome as a result of my shunt over draining between 2009-2014.  I feel pain in the nerves and the ventricles due to the damage and my body still searching for the shunt to be on the left side of my brain. I've tried sleeping on my right side, which has helped a little with the pain issues on the left side of my brain.

I'll be celebrating my injuries as a second birthday all month. In 2014 I was in rehab from March 11 - April 5.  Today I went to the movies and it was nice to get out of the house.  I'm not able to work right now and I'm home 90% of the week. Things will be this way until I start vocational rehab sometime this summer.

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.