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. 🙂