Friday, December 27, 2013

Adventures in brain surgery

I was home all day on Wednesday (12/25) and yet I was interrupted several times by my shunt:

12/25/13 – Sharp pain on shunt valve multiple times starting at 2:38am, 6:40am-7:03am, 7:11am, 7:36am-7:38am, 8:02am, 9:52am-9:55am, 10:05am (multiple times) 11:24am, 12:38pm-12:40pm, 1:05pm, 1:39pm, 5:25[m. 5:59pm-6:02pm, 7:05pm, 7:55pm-7:58pm, 8:16pm, 11:30pm. Pain in stomach starting around 6:40am.  Sharp pain on distal catheter (top left of head) around 5:30am.

My shunt log is 14 pages. I've been recording my shunt's activity sine July 2013.

Monday, December 9, 2013

1am again

I was up until 1am this morning because my shunt valve was hurting me.  The sharp stabbing pains on  the top right corner of my head just wouldn't go away. I took one asprin at 12am because it was driving me insane.  I recorded the following:

Headache in forehead at  5am and 7am. Took one ibuprofen took away headache.  Vibrations inside head around 2:20pm-2:23pm.  Sharp pain in back of head around 3pm.  Took one Percocet with dinner alleviated headache pain but not shunt pain.  Fluid buildup/pressure in back of head around 7:38pm 
( back of head felt full of pressure when moving from side to side) Sharp pains on shunt valve multiple times between 8:20pm – 12:46am.

Sunday, December 8, 2013

Hospital Stories

I returned home from the hospital yesterday 12/7. The pains in my stomach have returned today in addition to actual headaches, fluid in my forehead and throbbing on the shunt valve.  I was hooked up to a catheter in my left hand for two days so I wouldn't get dehydrated.

IV bag on 12/2 - 12/3

IV bag monitor 12/2 -12/3

On day three (12/4) An Intracranial pressure monitor and bolt (see right side image) had been placed and screwed into my head for 2.5 days in order to measure the intracranial pressure inside my head.
Me attached to ICP monitor on 12/6
The only image I could find online that explains what the ICP does.

2nd ICP monitor screen.

After I had surgery I was transported to  the Neuro ICU.  I was taken out of the ER ICU after my surgery and was transported by someone who worked in the Ambulance.   As we were riding down the hallway, he explained to me how they were going through training and had not been told the correct procedures in how to drive the vehicles.  They were basically told figure it out on your own.  This stressed him out because he was used to being given actual directions.  We arrived on the 7th floor and as we rode down the hallway, he realized we were on the wrong floor. As we're heading back to the elevators a nurse yells out to him the following:

RN: "Can you get me a bed?"
Driver: "No, because I'm busy right now. I have to take this patient to the Neuro ICU."
RN: "Well, you need to get me a bed."

The driver ignores her and we go into the elevator. The moment the doors close. He says:

Driver: "Can you believe the nerve of her asking me to just get her a bed? As if she had the right to just order me around.  She wasn't going anything. Why couldn't she get it herself?"

Me: "I agree. I mean you're obviously in the middle of something right now. As if you were obligated to help her."

Some people like to abuse their powers or sense of power. I arrived in the Neuro ICU around 9pm.
I had a corner bed by a window. The window however, was blocked by a building so I couldn't see too many clouds. The woman across from me was an elderly woman who had just had brain surgery. She tried to pull out both of the IV's in her arm. The nurses kept telling her not do to. At one point they took out the arm restraints so she wasn't able to move her arms.

The elderly man next to me died around 3:45am. I didn't watch him die because there was a curtain dividing us.  I do recall hearing a loud sigh coming from his bed then the nurse, Ana walked over to him and confirmed he had died. She then made the arrangements over the phone with morgue and called the family.  In the morning when the family came to pay their last respects, a nurses aide came around to take our temperatures.  She took the temperature from the elderly man's bed and the following conversation took place:

NA: "He's really cold"
RN: "He died this morning at 3:45am"
NA: "Really? Why didn't anyone tell me?"
RN: "Oh. I thought it was self-explainatory."


My shunt pain was bothering me on my first night in the NEURO ICU. I was given two percocet. The pain didn't go away until two hours later and was only diminished until I feel asleep. The 2nd night I had another episode and was given two additional percocet which didn't get rid of the pain completely.  I was given a morphine pill around 11pm.  I've had this same problem at home when I get the shunt pain. I take two advil and the pain doesn't subside until more than 2 hours later only to be relieved by sleep so it can happen again multiple times the following day. The morphine pill eliminated all the pain I had for that evening.

I was moved around 12am to the out patient ICU.  The older woman next to me had undergone back surgery and was in a lot of pain.  She wouldn't let anyone touch her.  I spoke with the night nurse, Lucy who was from Ireland.  She had never planned on coming to the states.  She was counting down the weeks until she was transferred to the Trauma ICU where she felt she could help the patients more.  In her opinion she couldn't really help the patients in the Neuro ICU because of their specific injuries.

Monday, December 2, 2013

A new shunt for the Holidays?

Since last Wednesday, I haven't had much of an appetite.  Most likely due to the csf fluid not properly re-absorbing into my stomach and re-circulating around my body like it's suppose to. I've had severe stomach pains since the middle of last week where I've felt my stomach convulse in very strange ways. I've felt the catheter in my stomach clog up several times. All of this in combination with the pains in my neck and head.  I've mentioned in past posts that the catheters in my neck and stomach need to be replaced as they've been in place since 1993. Perhaps after the tests I'll get tomorrow, I'll get some new hardware.  Having to deal with this again so soon upsets me.  It will be my third shunt revision in 4 years. It will be nice to not feel the shunt, as it's been giving me issues since July.

Sunday, November 17, 2013

Maybe this week?

I'm hoping to have my shunt issues resolved before the end of this week. Last week my neurosurgeon was out of town and I of course had a bad shunt week.  My symptoms are getting more frequent. Yesterday I had somewhere over 17 incidents of pain on my shunt valve, fluid buildup and pain on the catheter in the right side of my neck.  My log from yesterday is as follows:

11/16/13 – fluid buildup in forehead at 5am.  Pain in back of head at 8:12am. Pain down right side of neck and at top of head around 8:50am, 8:55am, 9:51am, 11am. Pain on valve at 9:05am, 9:25am, 9:30am, 10:06am, 10:11am-10:17am. Clogging on right side of neck at 10:28am. Pain on right side of neck on catheter at 11:20am.  Fluid buildup in forehead around 11:50am, 4:48pm into evening hours past 5pm. Throbbing and pain on shunt valve and right side catheter at 12pm, 12:18pm, 12:20pm, 12:23pm, 1:30pm, multiple times between 1:54pm-1:58pm. 2:05pm, 2:07pm, 2:36pm, 2:47pm-2:50pm, 3pm, 3:10pm, 3:38pm (while driving), 4:51pm.  Sharp pain on valve at 5:35pm. Took one asprin at 4:30pm only alleviated the pain in catheter side of neck but not pain on shunt valve.  Pain again on shunt valve multiple times at 6:42pm-6:44pm, 8:11pm. 

Then this morning:

11/17/13 – Fluid buildup in back of head and forehead starting around 5am.  Pain on shunt valve at 2am.  Pain on right side of neck on catheter at 8:19pm.  Sharp pain on shunt valve at 9:23am, 10:40am, 11:16am, 11:19pm, 12:15pm, 2:25pm.  11:20pm pain on right side of head and in back. 12:06pm pain on left side. Throbbing on top left side of head around 1:30pm and again at 2pm.  Sharp pain on shunt valve around 4:20pm, 5:49pm-5:51pm (multiple times), 6:21pm, 6:45pm. Sharp pain on right side of neck on catheter behind ear at 7:20pm, 7:23pm. 7:41pm, 8pm, 8:16pm. Pain in back right corner of head at 8:10pm, 8:15pm. 

Tuesday, November 12, 2013

Cold Floor

When I saw my surgeon in September he implied that I may have to have surgery again if I continued to experience the pain and other sensations I'd been feeling since July.  I've been keeping track of my findings in a log. So far it's nine pages in total.  I have an appointment to see my doctor in the second week of December.  At this time, I don't think I'll be able to wait the additional three weeks.  This week in particular has been a challenge because the pain I've experienced on the shunt valve and in other parts of my head (catheter in neck, top of head, etc) have been longer and occur more frequently and sometimes in pairs.  It's beginning to interfere with my concentration.   If I still feel this way tomorrow I may have to take a trip to the ER and allow them to figure out what the next step should be.  I'm aware of what's going on inside my head.  If a surgical intervention is needed it's better for it to occur now rather than in December.

Friday, October 4, 2013


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 4th – 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.