Monday, January 27, 2014


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.  

Friday, January 17, 2014

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. :)

Saturday, January 11, 2014


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.

Sunday, January 5, 2014

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.