August

Some days are better than others. There are maybe one to three days out of the month were I'm not feeling any pain in my head, neck or discomfort in my stomach.  Yesterday was the worst in terms of head discomfort.  All day at least every other hour I had short spurts of pain on the shunt valve, on the top left corner of my head or some random spot on the back of my head.  These spurts last anywhere from 3 seconds to 2 minutes.  What I found most odd was that whenever I bent down to pick something up or dipped my head down for a few minutes, I would feel sharp pain and pulling where the shunt valve is.  Last night I was disturbed by it.  I'm trying not to worrying too much, however there are times when it can be too distracting.  While at work and this occurs I have to just ignore it.  I've become almost obsessive about recording every detail of what I've been feeling inside my head, neck and stomach since July.  I have things recorded by the minute.

 August 4^th – Felt throbbing once this day top of head near shunt valve

9/26/13 – Pain on valve starting at 5am and again at 6:30am.  Fluid buildup in head around forehead and back of head.  Some dizziness.  Pain in back left corner of head, pain behind right eye and pain on valve at around 10:30am.  Experienced itching on stomach where catheter deposits for the last four days, on two of the longer scars. At 12:06pm felt sharp pains on shunt valve.

9/28/13 – 10:46am throbbing on neck catheter and again around 3pm.  Pain on valve during evening between 8pm-8:39pm. 

9/29/13 – Pain in catheter on right side of neck at 2pm and again at 8:23pm.  Dizzyiness during evening between 6pm – 7pm.  Experience itch on stomach same place as before (all day).  Experienced vibrations inside head while driving in car at approx 10:30am. Happened twice during that period. Upset stomach from 7pm – 9pm.

10/3/13 – Vibrations inside head around 4am. Happened twice. Pain and throbbing on valve around that time as well.   Trouble sleeping on right side again, clogging on catheter behind hear.  Pain on catheter at 6:17am. Pain on valve started again at 8am – 10:44am.  Pain on catheter in neck continued during morning from 8am-11am.  Vibrations around 10am-10:30am. Pain behind right eye at 11:12am. Throbbing pain returned at top right of head ( not on valve ) at a little after 1:01pm.  Continued to hurt for a few minutes stopped at 1:17pm.  Pain on valve at 2:12pm again at 2:37pm.   Pain on valve returned a different times between 4, 5 and 8pm-8:18pm. 

Buzz

I've been keeping track of my shunt's activities all summer, beginning in July.  It has decided at the perfect time to act out in defiance at certain times during the day.  I've noticed a repeated pattern.  Some days are better for me than others. However, it makes me wonder why when the shunt is acting out on it's own accord has an effect on my mood. My ns always asks with each six month visit about whether or not I'm having mood swings. Lately, I do have them at times.  However, they last for short spurts.   Could this be the cause of the csf fluid being off balanced and not draining the way it's supposed to?  The most frustrating part of all of this is I wish technology was more advanced in detecting the root cause of the problem, like in Star Trek when they would just scan you with a laser gun and know immediately what was going on....

A rather loud MRI scan is only going to show if there is swelling in the brain and whether or not my ventricles are enlarged.  It isn't going to show evidence of what or why the shunt is not draining properly.   I suspect as I mentioned in a previous post what I believe is going on inside my head.  I understand why I can't have immediate surgery right this very moment because they (the drs) need to me absolutely sure it's necessary.  I understand this imbalance issue will be resolved in December unless the shunt fails between now and then.  I'm not in excruciating pain, it's more like when your eye twitches from not getting enough sleep. The twitching won't go away.  Using eye twitching to describe throbbing and short spurts of pain in various parts of my head is really the only way I think non-shunt people can understand.  I can be grateful that this didn't happen while I was serving in AmeriCorps.  Since my shunt has decided to rebel yet again, I think I've found a way to make it work out in my favor. But we'll see...today has started out being better than yesterday and earlier this week. 

1am

I learned in 2010 that I have some thing called  a Type 2 Arnold Chiari Malformation.  It occured when I was three months old and because of the increased intracrannial pressure inside my skull it caused a malformation underneath my cerebellum.  In short it also means they caught the hydrocephalus in time before my brain herniated down the back of my spinal cord.  However, there are times when it causes me to have small headaches in the back of my head .  Sometimes I have to take aspirin in order for them to go away.  There isn't much that can be done for treatment as it's in a sensitive area.  This morning from 1am-3am I had a chiari headache and got up to watch some late night television and took an aspirin with some food.  There were also moments when I felt the same pulsing sensation I've felt all summer at the top left corner of my head.  I was able to go to sleep and got up this morning at 5:45am to start the day.  The chiari also causes dizziness and balance issues.  It's the reason why I don't sleep on my back looking at the ceiling as it puts pressure on the area.  If I'm laying on a head surface ( such as an MRI machine ) I have to have a towel underneath my neck. The one time I didnt't use a towel, when the exam was over, I couldn't walk for half an hour and was dizzy and almost walking into walls.  Sleeping in that position puts me in a really deep sleep and I'm not sure if it causes me to go unconscious or not.  In a funny way, I find it fascinating and weird all at the same time. 

Radoactive Headphones

A shunt series is when I have a few x-rays done of my head, neck and abdomen area to make sure the shunt system is still in the same place as it's been. Today, I had that plus my yearly Rapid Brain MRI with no contrast. It's a good thing I'm not claustrophobic...The experience is similar to being inside a very loud video game except your head is surrounded by what appears to be a large hockey mask and then you're entered inside an even larger tunnel. Afterwards while you're wearing headphones, you hear loud bangs, zips and twangs all around you. They make you wear headphones to protect your ears. Usually these Brain MRI's last between 20-25 minutes although it feels longer while you're in there. Now all summer since July I've been feeling throbbing sensations along the side of my neck where the catheter is and at the top of my head I feel occasional sharp pain ( about four times this summer ) where the shunt valve is. This sensation lasts for 3 seconds. Most of the time I've been feeling pulsing sensations all over my head which I find unusual. However, today my MRI looked good and so did the x-rays. I explained to my surgeon my concerns and the physical issues I've been having all summer. My doctor feels I should come back again to see him in three months. I've been keeping a shunt log since the beginning of July when the shunt decided it wanted to rebel again. However my doctor thinks that if I continue to have these issues through to December, then an intervention is needed. It's been two and a half years since my last vp shunt revision. It will be exactly three years on February 16, 2014.

Back in 2009 exactly less than a month before I finished graduate school at the College of New Rochelle, I had to have emergency surgery at New York Presbyterian.  A year and half later on February 16, 2011, I had to have another revision and later found out my shunt had been put in backwards by the previous surgeon.....I'm not enthused about possibly having surgery again and having to deal with the recovery process.....