Howdy Hydrocephalus

Understanding my unique gyroscope

No it is not an STD

2 Comments

What a whirlwind ride the last nine months have been…similar to being pregnant but not quite. Instead of a baby, I get an answer. I feel triumphant because the symptoms I have been feeling have been acknowledged and thus categorized in the doctors world with a diagnosis of Hydrocephalus or Hydro for short.
All those Doctors in the ER can suck it…no I was not faking and no it was not anxiety and no it was not depression and no it was not fucking migraines. I am not stupid, I saw all the eye rolls facial expressions that I was wasting taxpayers money every time I came in. I know that NaCl is saline so I really commend you on getting to the root of the problem (insert sarcasm) but instead opt out to treat my “imaginary symptoms.”
I always said I was fine even though I wasn’t and then left because I was frustrated with your lack of concern, lack of listening skills & were wasting my time.
My GP told me that I should go to the ER when get weird symptoms & ER docs kept telling me to go to my GP.
The nurses & doctors should remember that there are only thin curtains between the rooms, their common areas and computers. Man did I hear some great stories of their staff parties, other patients and just general BS (lots of BS that was usually about other patients & not very nice).
Enough about the rant about our floundering medical system….so what the hell is hydrocephalus. No it is not the STD syphilis or related to syphilis in any way. It usually found in newborns and elderly. It can also become a part of your life due to a head injury, tumor, or infection. Or there is a small popluation that are diagnosed as young adults (nope) or middle age (yup). We are called SHYMA population and we are rare. We have either acquired Hydro at birth and adapted or genetic factors have allowed for aqueductal stenosis to occur (narrowing then closure of CSF flow). I have always known I was special but hell not this special.
In laymans terms hydro really is just water on the brain. But it really is not water but a clear liquid called cerebrospinal fluid or CSF. CSF acts like oil in an engine. It brings in nutrients for brain healthy & takes out the waste. It acts as a cushion to our brain and spine. The difference between oil in and engine & CSF in your body continues to make 500ml a day within the four ventricles of the brain and it circulates then is re-absorbed into the body. However, if there is a blockage or where re-absorbsion is impeded, your body still continues to make CSF but it has no where to go. The four ventricles begin to compensate for the fluid and begin to expand similar to a balloon being blown up inside another balloon. Because the ventricles are ballooning, the rest of your brain becomes squished and starts acting funky.
Symptoms that I have experienced are pressure in head, headaches, decreased memory, confusion, word finding, numbers, dementia like symptoms, forgetting tasks, can not multi-task, trouble walking, balance, weakness right side, anger, irritability, blurry vision, urinary urgency, insomnia then really tired during day (duh!), depth perception changes, balance, dull, loss of me including interests & generally just feeling like I am drunk.
I know as a parent with two kidlets, who doesn’t want to feel like their drunk at times, but believe me it wears on you really quickly. It takes you ten times longer to process information, understand conversation and read. I have to have the thesaurus up so I can figure out what word I am trying to type. I need someone to look at me when they talk so I can understand what they are saying otherwise I hear only the peanuts teacher. I am trying to write this and the kids are with me at home…thus they are getting into all sorts of stuff I will have to clean up because I can’t do two things at once. I have been tested and show signs of mental decline.
If hydro is left untreated it will further squish your head creating further brain damage and the pressure will increase that will eventually cause death.
So my options are to do nothing or have surgery. And…surgery wins!

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2 thoughts on “No it is not an STD

  1. Here’s me starting from the beginning. Your husband told me about the ER and Doc fun-times when we were at tkd this summer and I think my mouth was hanging wide open most of the time xxx

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