How could you mean that....?

[miserywhip]

Uhh, warning for potential medical TMI.
If talk about tubing and references to surgery or implants of some sort are going to be upsetting to you- ... probably avoid this entry.

For everyone else:

I hope it answers questions that anyone may have had.



So, when I got home I told my mother that my father wanted to know if I remembered the doctor saying that I could have outgrown the need for my shunt.

And my mom said, "Yeah, he said that but we brought you back several times and every time you had a check up they said that they wanted to continue monitoring you."

And if I didn't outgrow it by the time I was twelve, I'm never going to outgrow it, because um... I'm full grown. Yeah.



Thanks dad.


But, I'm feeling much better now, and think it had a lot to do with low blood sugar and lack of sleep. *Makes it all Andrew's fault* Getting up at 8:00 am for a meeting, and then working at 6:00 pm doesn't work for someone like me. Especially when I stay up all day chatting online, instead of going to bed when I should have.... Oh God, I'm so responsible.


The headache the night before is what threw me off, but whatever.
My favorite thing about all of this is that the symptoms for shunt failure are nearly identical to those of pregnancy. I wonder how women of the world deal with this, "Well, you could be dying, but on the plus side. You might just be pregnant."



I don't want to bore people that don't care to read about it, so here are some links and summaries for anyone confused or otherwise interested. Yeah.


"This tube goes from the affected area of the brain, connects to a one-way valve which sits outside the skull, but beneath the skin, somewhere behind the ear. It then travels down the neck, and into either the abdominal cavity (most common), the pleural cavity (surrounding the lungs) (alternative), or into the atrium of the heart (quite rare). Enough tubing is left in the area it drains to, so that it can uncoil as the child grows."

Six feet of tubing. Six feet of tubing, and I'm not even five feet tall.
I gag every time I think about how there's coiled tubing just chilling in my body, needlessly.


Dictionary.com





Hydrocephalus affects one in every 500 live births, making it one of the most common developmental disabilities, more common than Down syndrome or deafness.[3] According to the NIH website, there are an estimated 700,000 children and adults living with hydrocephalus, and it is the leading cause of brain surgery for children in the United States. There are over 180 different causes of the condition, one of the most common being brain hemorrhage associated with premature birth.

One of the most performed treatments for hydrocephalus, the cerebral shunt, has not changed much since it was developed in 1960. The shunt must be implanted through neurosurgery into the patient's brain, a procedure which itself may cause brain damage. An estimated 50% of all shunts fail within two years, requiring further surgery to replace the shunts. In the past 25 years, death rates associated with hydrocephalus have decreased from 54% to 5% and the occurrence of intellectual disability has decreased from 62% to 30%.

In the United States, the health care cost for hydrocephalus has exceeded $1 billion per year, but is still much less funded than research on other diseases including juvenile diabetes.





symptoms may include: listlessness, headaches, irritability, light sensitivity, sound sensitivity, nausea, vomiting, dizziness, vertigo, migraines, seizures, a change in personality, weakness in the arms or legs, excessive head growth (seen infants, children under age 2), strabismus, and double vision.

.... My life is all of those symptoms.


"The shunt failure rate is also relatively high and it is not uncommon for patients to have multiple shunt revisions within their lifetime. By 2-3 years of age, approximately half of shunts that have been inserted have failed and been replaced."

This has never happened to me, so I can easily think that maybe it won't and I'll be a rare case that's okay.... and half think "Dear God, I'm twenty years overdue, this thing could fail at any minute."



It took my mother two days to have me, because the hydrocephalus wasn't detected before birth, and I almost died shortly after birth.

And again, several days later.


This is why I always answer "Most traumatic experience?" with "Being born." I'm not trying to be overdramatic and say that I wish I was never born. Logically, I think that's the worst ordeal I've ever been through, and nothing can really top knowing what my mother had to go through during that time... nevermind, me.


Technical shit, and a diagram. Because... that's entirely necessary.

Comments

[rainjoyous.livejournal.com]

. . . yeah, that's what I'd call a traumatic birth. The way our species breeds *is* dangerous, I get kind of frustrated when people are all, 'I'm going to do this *naturally*, it's a *natural* occurrance!' and it's like . . . yes, and naturally women and children die all over the world every day from it. You are going to think about the kid if not yourself and you are going to do it properly with all the help you can get in a hospital, *surely* . . . ?

I'm gonna keep my fingers very hard crossed on your shunt, honey. There used to be a boy at work with a ticking thing in his heart to plug a hole, on quiet nights at the info desk you could hear him, like clockwork. The bionic person kind of stuff we can do now is pretty amazing - but not perfect and still really scary. But, you know. One day, automail =)

Good luck, honey. Rest up. *hugs*

[icarusxelric.livejournal.com]

I don't understand birthing. I just don't want children, don't want to have children, don't want to deal with the complications of medical... anything. Because, I have enough to worry about without bringing another life into this world to then worry about.

I don't know. Natural birth is just so risky... and people are just- so ignorant to a lot of things. I think my brother was a natural birth, he came before me back before mid-wives were made illegal here. But I was so much trouble, my mother had to go home and come back, so after the first attempt she would have gone to the hospital even if she'd initially tried for natural birth.

It amazes me how utterly primitive the eighties were, considering how -modern- a time it really was. But, thank you. On a day to day life, I have it pretty easy - my life is normal, I take walking and all that other stuff entirely for granted... so, when I bring up having a medical condition people either roll their eyes or panic. I asked the kid at work to stay for three hours for me, and he went "Uh, no. My girlfriend's home sick with my sick baby." As if I'd be trying to get out of work over a simple cold.

and I'm such a vengeful angry person, I practically hoped that I passed out or something so that he'd -see- that it was fucking serious, and how much of a jerk is flippant answer made him. Ugh.

But automail, yes. Someday. Maybe I can get my crappy leg replaced. So many things wrong with me, I should make a list.... but, I'll shut up now. And just be grateful that you know what? I can walk, and I don't have a hole in my heart or something like that.

[kanjoku.livejournal.com]

... *hugs*

[icarusxelric.livejournal.com]

♥