Pills

Since December 2013, I've been prescribed three pain medications, all for the treatment of headaches: Percocet, Divalproex SOD ER and Propranolol. None of these alleviated my shunt pain symptoms.  The Divalproex made me sleepy and dizzy.  The Percocet exacerbated my symptoms and the Proranolol didn't do anything.  The shunt pain is simultaneous with the pain behind my right ear and in my stomach/abdomen. I spoke with the neurologist today about my symptoms and he offered to up my dosage of 60 MG Propranolo to something higher even though I had already told him it wasn't doing anything.  No more drugs for me, until I get back in the hospital. 

Since I'm not going to be using my drugs I'm going to have them recycled at CVS Pharmacy.  When I went to pick up the Propranolol last week, I saw a sign by the check-out counter about CVS drug recycling.  The way I see it, I can recycle these and perhaps they can be reused to help someone who will actually benefit from them.  

Offices, Cars and CVS Prescriptions

The last two days with the shunt have been well, need I say more?

1/15/14 – Sharp pain on shunt valve at 6:06am, 7:46am, 7:56am, 9:01am (multiple times) 9:13am, 9:23am, 9:54am, 10:04am-10:06am (Multiple times), 10:32am, 10:55am (multiple times) 12:47pm, 1:08pm, 1:24pm, 1:30pm, 2:37pm, 2:47pm, 2:52pm, 2:57pm (multiple times) 3:08pm-3:11pm, 3:19pm, 3:34pm-3:39pm (multiple times) 3:42pm, 3:48pm, 3:52pm, 3:54pm (multiple times), 4:15pm, 5:02pm and into evening hours until going to bed at 8pm..  pressure in forehead, sides of head.  Fluid pressure buildup in forehead 1:38pm, pain down right side of neck on catheter at 2:11pm.  Total of shunt pain interruptions: 40

1/16/14 – Sharp pain on shunt valve at 2:19am, 9:11am, 9:32am,  9:41am-9:42am, 10:05am, 10:16am, 10:20am, 10:22am, 10:31am, 10:56am,   11:13am, 11:22pm, 11:32am, 12:57pm, 1:12pm, 1:35pm,  2:49pm, 3:01pm, 4:37pm-4:38pm, 7:05pm.  Pain down right side of neck on catheter at 7:46am, 2:38pm, 3:47pm, 4:17pm.   Pain on top left corner of head on distal catheter at 9:34am. Intra-cranial pressure in forehead at 10:34am-2pm. Still having appetite issues. Wasn’t hungry for breakfast, didn’t have appetite until 11am.  Pain in back of head at 2:11pm. Vibrations in back of head at 2:56pm.  Pain in stomach near ’93 revision scar at 3:01pm.  

Today so far: 1/17/14 – Sharp pain on shunt valve at 1:54am, 2:11am, 2:30am, 8:22am, 10:28am, 10:31am-10:32am (multiple times). 11:57am, 12:05pm, 12:30pm ( multiple times), 1:16pm, 1:26pm....

I went to see a neurologist today.  He determined that it is in fact my shunt which is causing all of my head, neck and stomach pain and appetite issues. Really? No you think so? This crap has been going on since July.  The good thing is it's good filler for this blog because at least I have something to write about here.  Having a chronic illness like normal pressure hydrocephalus/obstructive hydrocephalus is a good tool to weed out the people in my life who really don't want to/need to be there. I don't have enough fingers and toes on the amount of people who have moved away from me emotionally because of my health issues which are too much for some to handle. I am fortunate and appreciate that I am blessed to have a circle of friends who've been around for 5, 10, 15, 20 + years.  If people don't want to around or don't have the emotional maturity to be in a relationship with me and can't deal with everything which goes along with that, I don't want to be bothered. I welcome new people who would like to learn more and are willing to stick around regardless of what happens.

Am I looking forward to having my 8th shunt revision in the next few weeks? No, but it means the shunt won't be causing me pain any more. Have I enjoyed enduring the previous 7 surgeries. No, but again it meant the pain was going to go away and the shunt would be working again. The other revisions were done because it was an emergency and had I not had them at those times, I would've died. I appreciate my surgeon wants to do an intervention before it becomes an emergency.  The shunt not working also takes an emotional/psychological toll on an individual as well. I don't want people to feel sorry for me because I know things could be worse and I'm fortunate to be able to do the work I do when there are others with the same condition who have more severe challenges than I.  The whole purpose of this blog is spread awareness about the condition and give an inside look into what it's like to live with this.

Hydrocephalus is unpredictable.  I was really hoping with the last revision in 2011, I wouldn't have another revision for like 20 years. Why? Because I didn't have any shunt issues from my 1993 - 2009.  However, with time, the body changes which could explain why I could be having more frequent issues in the last few years.  I look forward to the day when we have technology as advanced as in Star Trek when all you need is a laser scanner which gives you an instant diagnosis of what's going on the shunt system including expiration dates. :)

Lemon

Today was a bad shunt day.  The last few weeks have been the usual disruptions. However the last few days have been particularly challenging.  Today's entry into the shunt log is as follows: 

Pain on shunt valve at 2:16am, 2:38am. 6:24am, 7:04am, 7:46am, 8:15am, 9:05am, 10:25am, 11:10am, 2:10pm, 2:31pm, 3:16pm, multiple times either every hour or multiple times within the hour between 4pm-8:21pm.  Vibrations inside head at 8:22am.  Pain on distal catheter ( top left corner ) at 8:50am.  Pain behind right eye at 9:24am.  Pain/throbbing down right side of neck on catheter at 11:46am.  Pressure in forehead at 8:23pm.  Felt nausea and almost vomiting a few times during the day. i.e. after lunch and in the evening hours between 4pm-6pm.  Pain in stomach from 3pm-4pm.  Problems sleeping on right side due to clogging in right catheter and stomach issues while sleeping on the left side.  

For me, sleeping on my back results in issues with the type II chiari malformation I have. It causes me to sometimes have balance issues and occasional headaches in the back of my head which go away with aspirin. I haven't been having those much in the last six months since my shunt has been misbehaving. The balance issues only arise in two occasions: When my shunt is obstructed. OR When I've been laying on my back staring at the ceiling and my neck is pressed against a hard surface.  I had an MRI in 2011 and they made me place my head in one of those cradles. When the MRI was over half and hour later, I could barely walk and the room was spinning.  Now when I have MRI's I ask for a flat surface and a towel to rest the back of my neck on. I hope the shunt behaves better tomorrow. I can only do Pilates so many times in order to calm myself down as pain meds don't do anything to alleviate my symptoms.  Good thing I have a scrapbook to work on tomorrow.  Perhaps it will be a good distraction.

Peace, Love and Little Donuts

Peace, love and little donuts is a doughnut shop I encountered while on my trip to Pittsburgh last week (12/28-1/4).  Of course during my vacation my shunt decided to act as usual, causing pain on the shunt valve, down the right side of neck and stomach pains/appetite issues at different times during the week, varying by day.  The pain on the shunt valve was worse at night as was the stomach pains.  There are times when I feel the catheter clog up while I am laying down in bed.  As mentioned previously, aspirin/pain reliever does nothing. Morphine helps the best, but only have access to it when I am in the hospital.  I find myself getting more and more agitated because of the multiple symptoms I've been experiencing. 

The pain yesterday from 3pm - 8pm was somewhat debilitating.  I had the usual pain on my shunt valve, but also had pain in the back of my head, sides and csf pressure in my forehead.  It was a good excuse for me to go to bed early and I needed the rest anyway....

Upon returning home, my cat greeted me and was very happy to have me home again. 
I was also pleased to learn today two cats named Scooter and Anthony who lived at the Palisades Mall pet shop were adopted last weekend. They had been living there for the last year and were almost adopted last over the summer, but the person decided against it. Scooter and Anthony were brothers and the Pet store was trying to find someone who would adopt them together.  Seeing the Congratulations sign on their former home at the mall, made me smile today despite the shunt misbehaving. 

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.

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.

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."

oops.

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.