The beggining of my life.....short version

My name is Shay. I was born and raised in Wichita, Kansas.

I have two older brothers (Mike and Eddie) and one older sister (Brenda).

I wouldnt say I had the worst childhood ever but it wasnt always peachy. My dad drank too much and would tear the house apart while he was drunk. It wasnt very pleasant to say the least. He would make me, my brothers, my sister and my mom pay the price a lot of the time.

There was more mental abuse than physical for me. My brothers, sister and mom usually got the physical abuse. He would sometimes leave Mike alone because he was sick too...only they knew what was wrong with him. He has a congenital disease called stergie webber. It caused him to go blind by the age of 18. He also had mental retardation due to the seizures he had. Mike had it rough and to this day, still does!!!

My dad was living with us but he might as well have been living some place else. When I was coming home from school, he was leaving to go to work. I some times would stay up late just to say hi and spend a little time with him before he started to drink. I never really knew my dad or who he was on the inside until I was much older.

My brother Eddie was the rebel, My sister Brenda was the honor student and My brother Mike had the big heart, while I the youngest was concidered the spoiled brat. (not true by the way...lol)

I had pretty much an average childhood aside from what happened in my house. I stayed the night with friends and family, was in girl scouts, played in AYSO, and was involved in other sports.

My childhood took a turn for the worst when I was about 8 years old. Brenda had gotten married and moved out, Mike was in a home for the disabled, and that left me and Eddie at home with mom and dad.

When I was 9 I began getting really bad headaches, dizzy spells, and horrible stomach aches. My parents had taken me to doctor ... after doctor ... after doctor. Most that the doctors would say is I had to be faking it....that got my butt beat a more than a few times!

When I was about 12 is when the symptoms got worse. I began having seizures, migraine haeaches, the same horrible stomach aches, and fainting. Again doctors told my parents there was nothing physically wrong with me and it was all in my head.

By the time I turned 15, I felt like I was living in my own personal hell! I was sick all the time and Eddie was the only one that said he believed me and knew something was wrong with me. Well the one person who I looked up to and counted on (Eddie) moved out as well by this time and got married.

I had missed a lot of school days and was failing pretty much every class I was in, so at 16 I dropped out of high school. Mom and dad made me get a job...which didnt last long either because I was so sick.

On my 17th birthday, I had gotten very sick and was admitted to the hospital but not for my physical pain. My parents were told by the doctors that "my illness was mental" and I needed to be admitted to charter hospital for physchological evaluations to be performed. I couldnt believe it....I felt like my world was being flipped upside down!

At 17 I had entered into a serious realationship with Danny and I had gotten pregnant. June of 1995 we got an appartment together and November 30, 1995 I gave birth to our daughter Martina Marie.

At 20, Danny cheated on me with my so called best friend angela....to get my revenge, I messed with his so called best friend Rick and ended up getting pregnant with my second daughter Kayla Dawn.


Rick didnt help with the pregnancy or even after she was born. She was 9 months old before he ever seen her. During that 9 months I had done something that would take over the rest of my life. I was way to sick at the time to work so I commited forgery and credit card fraud to support Kayla and I. I tried getting help from charity but kept getting turned down. She needed things such as a crib, diapers, wipes, formula, car seat, clothes, and a place to live. I regret doing those horrible criminal acts but was stuck between a rock and a hard place. I went to jail for what I had done so to make it short.....Brenda addopted Kayla because I refussed to let her enter a foster home until I was free. She promised me that Kayla would know me as mom and I would get to see her whenever I wanted when I got released from jail. Only that didnt happen. She kept Kayla from me for nearly 4 years when I came home and Kayla is the one who figured it out that Brenda was in fact her aunt, not her mother.

I entered into such a deep depression by this time because I had messed up my entire life trying to give Kayla a life I wasnt able to provide and I had gotten even sicker by this time as well.

I was then 21 years old. My illness was really messing up my life by this time. I couldnt work and whenever I tried, it would last for about three or four months and I would get fired for missing too many days.

To say the least....I was desperately trying to hang on by a thread!

I couldnt deal with the pain any more, so like my old man, I began to drink my pains away.

I didnt stop drinking heavily until one night changed my life. I had decided that my life wasnt worth living any more and attempted suicide. This was a rude awakening when I ended up in a hospital bed. I made the choice right then and there I would NEVER drink again and I would attend as many AA meetings as it took to stay straight!

Photobucket Album

The 3 years before being diagnosed....

In 2001 I mett a man by the name of JC. We began a relationship and all was good until he hit me. Three weeks after I had gotten rid of him, I found out I was pregnant.

On July 10, 2002 I gave birth to our daughter Isabella Lynn. JC wanted nothing to do with our daughter so I gained full custody. He moved to Salt Lake City just to get away from her.

10 days after she was born I woke up and felt as if I needed to pee, only it wasnt pee that came out. I was hemmorhaging. I called Brenda to come get me and take me to the ER. They immediately done a sonogram and found massive amounts of blood clots within the cavity so they decided to do an emergency D & C on me. I also recieved 2 pints of blood. This was what began the long list of surgeries for me.

In the following 3 years I had to have a tubal ligation, hysterectomy, oopherectomy, chemotherapy and radiation therapy for breast cancer, laminectomy with fussion on L4-L5, and several small surgeries to remove polyps from various parts of my body.

The worst was yet to come, little did I know.

28 and beyond.....

I was 28 years old and I had gotten so sick I couldnt even hardly walk. The migraines were coming up to 5 times a week....and the pain from them was so bad that it would make me black out several times with each occuring migraine.

One night while driving down I235 here in Wichita, Kansas...I blacked out and wrecked my car. The hospital done a MRI of my brain to make sure I didnt have a bleed in the brain that would have caused me to black out like I did. I wasnt expecting or even half ready to hear what they had to say....even though it explained why I had been sick for so long.

I was diagnosed with Chiari Malformations type I. The herniation of my tonsills was at 22mm. "I needed the decompression surgery done in less than a week or I would die" is what one of the doctors said to me.

I dont think I can remember a time when I was as scared as I was at that moment!

Brain surgery??? wow. I was dumbfounded. All this time that I had been sick and all they needed to do was a MRI and the wreck wouldnt have happened and I probably wouldnt have had such a bad life to this point.

My parents asked when all this came about and after the doctors explained that I was born with the disease and all my illnesses throughout my life had been due to the Chiari....I finnaly got an appology from my family for all the times I got grounded, yelled at, called a liar or looser, slapped, and so many other horrible things that were done to me. I finnaly had an answer to my prayers. All I had ever asked for is to find out what was making me so sick....and I finnaly found out.

I had so many questions with so little amount of answers.

I began doing research on my own after the decompression was done and over with.

I was symptom free for about 5 1/2 months and then all the same old symptoms came back to haunt me again.

The migraines were even worse than before! I was so confussed! Why was I getting sick again???

My neurosurgeon who performed the surgery had done a MRI and said nothing was wrong and all I could think is "god help me...here we go again"

For the next year or so I suffered.

In may of 2007 I stumbled onto a nuerosurgeon who specialized in Chiari...that doctor was John Oro. He proved to be my answered prayer!

I went to see him in June of 2007 and he done another MRI. He wasnt sure at first what was going on exactly but had a good idea.

I went back in July of 2007 and he had a cine flow study done on me. It turned out that I had almost no flow of the CSF and I had an enormous amount of scar tissure built up from the 1st surgery so he scheduled me to have a Posterior Fossa Craniectomy for August 21, 2007.

All the pain I had gone through was nothing compared to the pain involved with this surgery! Man it hurt so bad I wanted to die!

I went to my post operative appointment on October 8, 2007 and everything seemed to be all better.

Theres more to come...trust me.

1st Annual Cure Chiari Walk

I am organizing a walk here in Wichita Kansas to benefit research with The Conquer Chiari Foundation.

It is being held on March 22, 2008 @ the Sedgwick County Park

Registration begins at 9 am and the walk events begin at 10 am

If you are going to be in Wichita at that time please join us in the fight against Chiari!!!!

Im also working on getting March to be proclaimed as Chiari Awareness Month in Kansas!

I hope we can find a cure soon, too many of us dealing with this disabling disease!!!

I will post more on the walk as the time draws near! Thanks.

shay

Need donations Please!

I am a single mom who isnt able to work due to my illness's and Im needing a nerve stimulator surgery. The surgery is being done in colorado and we need money for the travel expences, hotel and surgery itself. I have state insurance and they have refused to pay for the surgery because its out of Kansas. I am desperate and am asking for your kind help. It would be greatly appreciated!!
thanks.

shay

Hans Chiari...the one who discovered the malformations

Hans Chiari (September 4, 1851 − 1916) was an Austrian pathologist who was a native of Vienna. He studied medicine in Vienna, where he was an assistant to Karl Freiherr von Rokitansky (1804-1878) and Richard Ladislaus Heschl (1824-1881). Later he practiced medicine in Prague and Strasbourg. At Prague he was superintendent of the pathological-anatomical museum. He was the son of gynecologist Johann Baptist Chiari (1817-1854), and brother to rhinolaryngologist Ottokar Chiari (1853-1918).
His primary studies were concerned with postmortem examinations, and most of his 177 published writings are the result of these autopsies.In 1891, he described a brain malformation that is characterized by abnormalities in the region where the brain and spinal cord meet, and it causes part of the cerebellum to protrude through the foramen magnum (bottom of the skull) into the spinal canal. This was to be called the Arnold-Chiari malformation, named after Chiari and another pathologist, Julius Arnold (1835 − 1915). The malformation was given its name in 1907 by two of Dr. Arnold's students. However, Arnold and Chiari were not the first to describe this condition; a Scottish physician named John Cleland (1835 − 1925) first described the malformation in 1883, and called it "basilar impression syndrome".
Chiari has another eponymous medical term named after him; the Budd-Chiari syndrome, which is ascites and cirrhosis of the liver caused by an obstruction of the hepatic vein due to a blood clot. It was named in conjunction with British internist George Budd (1808 − 1882).

Glossary: Some medical terms you may not know

Term
Definition
Apnea
to stop breathing intermittently, may be due to compression on the brainstem.

Arachnoid
one of the three membranes covering the brain, appears to resemble a spider web. There are 3 layers of covering of the brain and spinal cord- the pia, arachnoid and dura.

Arachnoiditis
inflammation of the arachnoid

Aspirate
inhaling fluids into the lungs. (Inability to swallow properly can allow fluid into the lungs.)

Ataxia
inability to coordinate movement. Stumbling when walking, or inability to maintain a fluid gait when asked to walk a straight line.

Atrophic
changes in the muscle that create an appearance of being wasted away

Atrophy
wasting away of the muscle, often due to lack of use or inability to exercise a muscle.

Basilar Invagination
the base of the skull and the first cervical vertebra dent inward, causing pressure on the brainstem or upper cervical spinal cord.

Catheter
small, soft plastic tube used to drain fluid. A Foley catheter is often inserted into the bladder for surgery. A shunt catheter can be inserted into a syrinx or the ventricles of the brain.

Cerebellum
the lower part of the brain that lies in the posterior fossa and is responsible for coordination and fluidity of movement.

Cerebrospinal Fluid
clear, water-like fluid that flows around the brain and spinal cord, and acts to cushion the structures. The total CSF volume in an adult is about 150ml (or about 1 pint).

Cervical
pertaining to the neck

CINE MRI
or CINE MRI flow-study is a special test that looks at the flow of cerebrospinal fluid around the posterior fossa and into the spinal canal.

Clonus
abnormal, uncontrolled jerking of the foot when the ankle is jerked upward.

Cranial nerves
a set of 12 nerves in the brain that control motor and sensory functions.

Diplopia
symptom of seeing double, or double vision

Dura Mater
the tough outer covering of the brain. Lies below the skull.

Dysequilibrium
inability to maintain proper balance. Often noted as stumbling or falling to one side.

Dysesthesia
an unpleasant sensation. A symptom of pins and needles or tingling when skin is touched.

Dysphagia
inability to swallow properly. Often leads to aspiration.

Ectopia
abnormal herniation, displacement or hang down of tissue

Electrocautery
a small instrument that uses heat and is used in many surgeries to stop bleeding.

Hemisphere
one half of the upper portion of the brain.

Herniation
abnormal protrusion (or overhang) of tissue. Some MRI reports will read herniation of the tonsils- this means the tonsils are hanging down too far.

Hoffman's sign
(or reflex) an abnormal reflex that is tested by placing the fingers in a neutral position, and (painlessly) flicking the nail of the middle finger. If positive, the other fingers will abnormally flex in response.

Hydrocephalus
Abnormal, over filling of the spinal fluid pockets (ventricles) in the brain. Can cause symptoms such as headache, balance problems, incontinence and memory problems.

Hydrosyringomyelia
a fluid cavity in the spinal cord. May also be referred to as syrinx, or syringomyelia.

Incidental Finding
a finding that is unexpected, or unrelated to symptoms. May refer to a person who has a finding on MRI, but has no symptoms.

Laminectomy
removal of the roof bone (or posterior arch) of a vertebra.

Limb ataxia
inability to maintain fluid movement of the arm or leg. Inability to touch finger to nose properly.

Lumbar
referring to the lower most part of the spine, the low back.

Meninges
the 3 layers of covering that surround the brain and spinal cord. Consists of the pia mater, the arachnoid, and the dura mater.

Meningitis
inflammation of the meninges. May be due to bacterial or viral infection.

Myelogram
special radiology study that involves injecting contrast dye into the spinal canal and taking x-rays of where the dye travels. The test is often followed by a CAT scan of the area. The test is often done to determine if there is blockage of flow or a nerve root that is being compressed. This test is less commonly used than MRI.

Myelomeningocele
herniation or protrusion of the spinal cord through a defect in development of the neural tube- seen in infants. Often associated with Chiari type II.

Nystagmus
abnormal bobbing of the eyes. Can be seen when looking to the side or up and down.

Parasthesia
abnormal sensation in the extremity.

Pericranium
a muscle layer between the skull and scalp.

Periosteum
a muscle layer between the skull and scalp. (Called pericranium when on the skull).

Posterior Fossa
A general term for the back area of the brain. This is where the brainstem, cerebellum and cerebellar tonsils lie.

Shunt
small, soft plastic tube that is used to drain fluid.

Sleep apnea
to stop breathing intermittently when sleeping. Symptom can be described as waking up short of breath or gasping for air.

Syncope
Spells of passing out, or fainting (loss of consciousness). Different from a seizure.

Syringomyelia
the condition of having an abnormal fluid cavity in the spinal cord

Syrinx
abnormal fluid cavity in the spinal cord

Tethered cord
When the spinal cord becomes stuck to the surrounding structures

Thoracic
refers to the area from the shoulder blades, through the ribs, to about the beltline.

Tinnitus
ringing in the ears.

Tonsillar ectopia
a small amount of hang down of the tonsil tissue of the cerebellum.

Tonsils
a small, often rounded mass of tissue. There are several tonsils in the body, including in the throat, in the intestine, or in the brain. In reference to Chiari, indicates the tissue tucked behind the cerebellum that protrudes downward, causing a plug effect.

Ventricle
fluid pocket in the brain (4 in all), that holds spinal fluid. Enlargement of the ventricles can be called hydrocephalus

Chiari pathophysiology

Many researchers believe that the Chiari malformation results from underdevelopment of the lower part of the skull. The Posterior Fossa is too small and does not provide the room needed for the Cerebellum and the lower brain stem. Thus, the lower part of the cerebellum, and sometimes the lower part of the brain stem, develops below the foramen magnum.
Why most people don’t show symptoms in infancy is not well understood. What is known is that the brain moves with every heartbeat. Special MRI studies, called CINE MRI, have shown that the brain expands quickly with each heartbeat as blood is pumped into the brain. The briefly expanding brain, restricted by the fixed skull, moves downward toward the foramen magnum, which is already crowded in patients with the Chiari I malformation. This continuous downward pulsation of the brain can result in malfunction of the neurological tissue in the area. Just think about it - the heart beats 72 times each minute – 60 minutes each hour – 24 hours per day – for a grand total of 103,680 brain pulses per day! Even worse, when a person with the Chiari I malformation coughs, sneezes or strains, there is additional downward pressure which causes the Tonsils to impact into the foramen and cause an increase in the headache.
For most patients the Chiari malformation does not run in their family. However, in some cases, it can pass down from the mother or father to son or daughter. Further research in this area may lead to a better understanding of the causes of the Chiari malformation.
Blockage at the foramen magnum means that the spinal fluid flow into the spinal canal will not be normal. In some patients with Chiari, this abnormal flow will cause fluid to build up inside the spinal cord, the condition called Syringomyelia (the cavity itself is often referred to as a Syrinx). The number of patients that develop a syrinx from the Chiari I malformation varies from 20% to 70% depending on the patients studied and the type of test used to determine its presence. Although the leading cause of syringomyelia is Chiari malformation, it can also be caused by trauma, tumor or infection. In some cases, the cause is idiopathic (unknown).

Symptoms of Chiari Malformations

“When symptoms such as headaches, dizziness, and fatigue persist, they often rob a person of their quality of life. Though not everyone experiencing these symptoms is suffering from Chiari I Malformation, for those that are, we’re here to provide answers and options. We’re here to help.” – John Oró, MD Symptoms from the Chiari I malformation often develop in a slow and insidious manner. The symptoms are often vague and progress slowly over a number of years. Many patients have symptoms for years before they are diagnosed with the Chiari I Malformation. About 1 out of 4 patients develop symptoms after trauma. The trauma is often mild or moderate in nature. Patients have reported accidents such as a falling off a trampoline, falling off a porch, accidentally hitting the back of their head or falling while riding a bicycle.
The most common symptom of the Chiari I malformation is headache. The headache usually begins at the back of the head and radiates behind one or both eyes, the top of the head or the temples. The headache is often described as a pressure sensation but can be heavy, sharp, or stabbing. For many, the pain varies between these and other sensations.
The headache is often made worse by straining activities (known as valsalva maneuvers) such as coughing, sneezing, or even laughing or singing. Some patients report feeling as though “my head will explode” or like “my head will pop off”. Bending forward, or looking up can worsen the headache. When the headache is intense, some patients will note dizziness, blurring of vision, nausea, or a feeling of a “mental fog”.

Visual Symptoms

A variety of other visual symptoms can occur with the Chiari I malformation including double vision, decreased peripheral vision, seeing flickers of light (“fireflies”), visual loss, blind spots, photophobia, spasm of the eyelids (blepharospasm), and jerking of the eyes (Nystagmus).

Auditory Symptoms

Symptoms of the hearing and the balance system include dizziness, ringing in the ears (Tinnitus), poor balance (disequilibrium), decrease or loss of hearing, and vertigo. Other symptoms related to the Cranial nerves and their nuclei include hoarseness, problems swallowing (Dysphagia), slurring of words (dysarthria), and numbness of the face.

Extremity Symptoms

Many patients complain of weakness, numbness or tingling, or pain in the arms or legs. Often, only one side is involved.

Respiratory and Heart Symptoms

Effects of the Chiari malformation on the respiratory and heart centers can cause shortness of breath, chest pain, episodes of rapid heart rate (tachycardia), black out spells, and hypertension. Abdominal symptoms may include nausea, abdominal pain, or vomiting.

General Symptoms

These include depression, poor sleep (insomnia) and fatigue. Some note problems with memory, thinking and speech. People report the feeling of a “brain fog” with difficulty in thinking and concentration. Difficulty in finding the right word is not uncommon.
With so many possible symptoms, most which can be caused by other conditions, a physician may not suspect the Chiari malformation as a possible cause of the symptoms.
It is important to note that other conditions can result in symptoms similar to that of the Chiari I malformation.

Other conditions that should be considered include:

Migraine
Cluster headache
Rebound headache
Pseudotumor cerebri
Occipital neuralgia
Post-concussion syndrome
Hydrocephalus
Multiple sclerosis
Chronic fatigue syndrome
Fibromyalgia
Sleep apnea
Spinal fluid leak
Arachnoid cyst
Degenerative disc disease
Psychiatric disease

what is the treatment???

Medications may ease certain symptoms, such as pain. Surgery is the only treatment available to correct functional disturbances or halt the progression of damage to the central nervous system. More than one surgery may be needed to treat the condition.

What is a Chiari Malfomation????

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. There are three primary types of CM. The most common is Type I, which may not cause symptoms and is often found by accident during an examination for another condition. Type II (also called Arnold-Chiari malformation) is usually accompanied by a myelomeningocele-a form of spina bifida that occurs when the spinal canal and backbone do not close before birth, causing the spinal cord to protrude through an opening in the back. This can cause partial or complete paralysis below the spinal opening. Type III is the most serious form of CM, and causes severe neurological defects. Other conditions sometimes associated with CM include hydrocephalus, syringomyelia, and spinal curvature.