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.