#lp shunt

[shyyycatsblog]

Yall this is going to be pretty TMI so skip this if you don't want personal details lol

My shunt has been hurting me on and off since my surgery and most of the time it doesn't hurt but sometimes I get this horrible sharp stabbing pain starting in my lower abdomen and shooting down into my butthole and talking about it would be funny if it wasn't so fucking painful. I tried asking my surgeon and he didnt tell me what could be causing it and I can never get a call through to his office and they don't reply to messages left on the answering machine so I'm so tempted to go to the ER and get an xray to see if my tubing has somehow made its way down to somewhere it shouldn't be?? Because I'm so worried it's going to perforate my intestines if it gets left unchecked and untreated.

[isjohngreenmybestfriendyet]

Day 2042:

@fishingboatproceeds is not my best friend yet.

[isjohngreenmybestfriendyet]

Surgery has been cancelled.

I got the call yesterday that my surgery for today was cancelled. It’s cancelled bc of my Chiari Malformation. (Basically a herniated cerebellum) It’s a small issue, but putting in a lumbar shunt would make the Chiari worse, so the surgeon decided instead not to do the procedure. 

The new plan is to schedule a Shunt Patency Study (where they inject nuclear dye into my shunt, which is basically a long tube, and watch it flow and see how fast/slow it takes) and based off of those results possibly look at replacing my shunt on my right side, which is currently inactive. 

As always if you have any questions or things you don’t get please feel free to ask for clarification. I’ll do my best to simplify the Big Medical Words, too. 

[all-disasters-have-an-upside]

Hydrocephalus and growing up

Looking back on growing up with hydrocephalus, I was pretty lucky. My family is upper middle class so surgery isn’t a big deal with insurance. I was always so happy that I was the way my friends saw my illness, it didn’t have much media representation so it couldn’t be dramatised. I spent hours explaining shunts to people twice my age. Recently an article my mother shared talked about choroid plexus cauterisation, a new procedure which is preformed on infants with hydrocephalus, it may let them live shunt free lives. Reading the article I was so happy that it might be a possibility for future new born hydrocephalus patients to not need shunts. But then came the twinge of jealousy that they couldn’t gave developed it when I was a baby. Just some hydrocephalus stuff. Here’s a link; http://fithealthinsurance.info/2016/07/23/new-procedure-improves-life-children-hydrocephalus/

[losingwill]

A bit personal...

So my stomach pain is incredibly bad tonight. I honestly feel like there's a beach ball made of razor blades and acid inside my abdomen. Every time I move it's agony. Even breathing normally is beyond me right now. I'm not normally one to really go into details when I'm not feeling well. I'm the type of person who just gets on with things regardless of how crap they feel. But tonight I'm too tired for that. So I apologise... The thing is, my super strong painkillers will take the edge off and help me sleep but they're not easy on the digestive system and in the end I know they'll make me feel worse in future. But I'm so tired. It's moments like this that I regret ever having my LP shunt operation, even though I know it was necessary to stop me from going blind. Sorry. It's just been a rough night....

[losingwill]

a bit depressing, yes

Seriously, I spent most of my time daydreaming about the time when I will be feeling well enough to exercise on a regular basis. While I'm scrolling through all these tumblr posts about everyone's progress and seeing pictures of how excellent everyone is doing all I can be is achingly jealous.

I'm not being lazy. I'm not trying to take the easy route. I really am physically incapable of exercise at the moment. No bending, no stretching, no lifting anything that weighs more than 10 pounds. 

About six months post-op, that's when I should be healed up enough to start and that's not for another four months. 

In the mean time I go for long walks. I climb the stairs more than strictly necessary. I fidget.

I know eating healthy is the biggest step in the right direction, but I am impatient. The most annoying thing is that this operation I had was supposed to give me my life back. Turns out it didn't quite.

So, if anyone has any suggestions for lazy exercise, I'd love to hear them.