Wednesday, January 16, 2013

January 4, 2013

What is Chiari?

Written Jan 4, 2013 7:33am by Michele Robinson (Duffey)
So maybe you are wondering...What is Chiari anyway?
When I first heard of it..I racked my brain for some trace of information from nursing school..but came up with no answer.
A quick Google search revealed the answer. Chiari Malformation Type 1 (There are 4 Types) is a congenital malformation of the posterior fossa. Basically, the back of the head is crowding the brain. This crowding forces the cerebellular tonsils (at the base of the cerebellum) to herniate into the spinal column. When this happens, the cerebellum acts as a cork, decreasing the flow of spinal fluid. The opening to the spinal cord mostly affected is the foramen magnum. Ten of the twelve cranial nerves originate in the foramen magnum...thus the vast array of symptoms.

In my case, there is also an arachnoid cyst present on top of the cerebellum, so my brain is being pushed down and forward, and my brain stem is bent forward. My pituitary gland is flattened. Everything is very squished together.

One fellow Chiarian stated that her surgeon told her that when he decompressed, that is..he cut the piece of her skulll out and then cut into the lining of the brain that her cerebellum popped like a can of biscuits opening..that's alot of pressure.

I was born with this. 98% of all Chiari patients are born with this, however, there are a few disorders that can cause non-congenital Chiari, such as pseudo tumor cerebri (where there is an over abundant production of cerebrospinal fluid.) or traumatic brain injuries.

Chiairi is most frequently diagnosed in the adolescent years or between ages 21-73. One of the main problems in diagnosis is that people with Chiari accept so many abnormal things as normal, so we don't seek treatment. I've discovered in past months that the following are not normal:
Head throbbing upon standing up-
Head pounding with exercise-
Constant tightness in head, neck and shoulders
Ability to hear my heartbeat all the time
Swishing sound in ears
Almost continual ringing in the ears
Trouble with word finding (I say the wrong word when thinking the right word)
Short term memory loss.

Other symptoms I knew weren't normal:
Ridiculous headaches
Occasional choking on my own saliva--
Left/arm & leg pain numbness, tingling
Body parts "falling asleep" easily
burning in fingertips
Crazy dizziness-
blurred, darkened vision
nipple discharge (I actually had surgery for this 11 years one linked it to my pituitary gland being flat.)
tooth crumbling (I have pins in all of my lower back teeth due to this...started at age 12)
Inability to perform simple calculations.

Currently-the worst issues are the headaches, dizziness, word finding, ---I deem these the worst because they are becoming daily obstacles to overcome. Although surgery most likely won't cure all of the symptoms, my prayer is for symptom alleviation so I can get back to a somewhat normal life.

I've posted a webinar from my neurosurgeon and an informational website on Chiari for further information.

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