Thursday, September 12, 2013


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 has started out being better than yesterday and earlier this week. 

Thursday, September 5, 2013


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. 

Tuesday, September 3, 2013

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.....

Sunday, September 1, 2013


Since the beginning of July, my shunt occasionally throbs in various places around my head and neck. At one point it decided it wanted to re-adjust itself three-four times a day for the first two weeks in July 2013. There were times when it would ‘over-pump” and I would feel slight pain which would last for three seconds then go away. It’s been like this off and on all summer. It’s not debilitating, just annoying. Today it happened again, this off throbbing sensation down my neck where the catheter is and some throbbing at the top of my head. Don’t get me started on sleeping on my right side. This sometimes causes the shunt to get a little clogged if my head is bent ever so slightly the wrong way on the pillow. I don’t want to over think what it could be because doing so would exacerbate the situation. So I must wait until later on this week when I go have my yearly Rapid Brain MRI and see what’s really going on inside my brain.

The Return

A friend told me I should bring back my adventures with my shunt....More stories coming soon...