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Written Jan 6, 2013 2:19pm by Michele Robinson (Duffey)

So again..here I am at work. It's been a crazy day of surgeries. I'm here alone..and ready to go home. I woke up with the typical headache, I've only been really dizzy 4 or 5 times..tripped once..but no falls..So all is well.
I've been really touched by the messages in my guestbook. I appreciate the posts and know I will enjoy re-reading them in the coming weeks. Thanks so very much. I love each of you too. True friends are priceless.
I'm really struggling with dropping my classes this semester. I actually re-enrolled for one of them today..I'm thinking..surely I can take just one. Then the other part of me thinks...do what the dr. said, take no classes..spend the time recovering and making wedding plans. But is that the easy way out? Is there an easy way out?
I don't know. What I do know today is this: I have fabulous friends from all over that I am very grateful for, I miss my children immensely, and at the end of the day, I'm glad to go home to a house filled with peace and love. I am blessed.
I pray you are blessed today as well.

Written Jan 5, 2013 1:43pm by Michele Robinson (Duffey)

So, today I'm at work. We rotate weekends. It's my turn..so here I am for a long day alone. I was on the phone with Dr. Kim's office earlier..getting the financial breakdown. This brain problem is quite pricey...My insurance only pays Dr. Kim's fee at 50%..Insurance is great at times. Other times...well, other times are just other times. Thankfully, the hospital fee is covered at 80%.
His office staff..a sweet young girll named Kristen, was kind enough to remind me that this only covers the procedures Dr. Kim sees necessary so far. She went on to tell me of other procedures that commonly arise in people with Chiari, Arachnoid Cysts and EDS. Not exactly what I wanted to hear, but I guess I'd rather have all cards on the table and know exactly what could happen.
She laughed at me a few times because I said the wrong thing..like I said "Isabel" when I meant to say "Dr. Kim". She said.."I hear it all the time..all of the Chiari patients do that". I wish I could hang out with more Chiari patients. I think I would feel a little more normal.
I've purposed to pray for Kristen daily. What a job she has..calling patients..ALL of whom are facing brain surgery for a vast array of things. We are all anxious about finances and anxious about surgery. She is very calm, kind and patient. I met her in the office, she appears to be about 24-25 yrs old. Very mature and comforting in her mannerisms. If you think of it, pray for Kristen, I'm sure there are many days she needs it.

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
vertigo
nipple discharge (I actually had surgery for this 11 years ago..no 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.
nausea

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.

 January 3, 2013

I had some wonderful conversations with people today and many well wishes and promises of prayer. My sweet friend Amy said, "I just want to put my arms around you"..I told her..and I'll tell all of you..your notes, texts, emails and FB messages are like hugs..and I can feel them here in central Texas.

January 3, 2013
Today I'm getting started..for a candid glimpse into my "constricted cranium" I will do my best to update symptoms and activities each day.

Yesterday I worked a 13 hr. shift at the hospital. Each day is a battle of balance and dizziness at work. I got through the day with only tripping once..however, my word finding was ridiculous..by 5 pm I could barely speak a legible sentence. This is so funny to me, and embarrassing. Thank goodness none of my co-workers say anything about it.. I'm thankful for two days off to rest.

I submitted short term disability claim forms and general medical leave claim forms last Friday. I contacted OU to take a semester hiatus from graduate school (Per doctor's order)..and I traded in my head-jarring Jeep Wrangler on a smoother riding older car. Doing all of these things is emotionally taxing..it's like admitting that Chiari controls my life. Reality check...it does.

I'm going to include posts from my CaringBridge site as I've spent more time on there lately:

Background Story:
Several months ago, an MRI revealed Chiari Malformation Type 1. This diagnosis not only explained the extreme bouts of dizziness, but also a lifetime of headaches, fatigue and memory problems. Basically, Chiari has hindered my health since birth. Now at age 44, symptoms have exacerbated making every day challenging. Symptoms have increased to include the following: continual headaches, almost constant dizziness, occasional vertigo, left arm/leg pain, weakness, and tingling, difficulty swallowing, trouble with word finding, peripheral vision loss, blurred vision, short term memory loss...and this list goes on.

After months of seeing doctors and specialists, there is finally a plan of treatment. On January 30, 2013, I will undergo a posterior fossa decompression, a brain surgery (craniectomy), in which my neurosurgeon, Dr. Dong Kim, will remove a piece of bone from my skull, and will cut an opening in the dura (lining) of my brain, relieving the pressure on my brain stem. A few weeks ago, Dr. Kim discovered an arachnoid cyst on my cerebellum, therefore, during the decompression he will perform a second procedure to fenestrate (poke holes in) the cyst, allowing the cerebrospinal fluid within to drain. Prayerfully, the fenestration will prevent a subsequent surgery to place a shunt.

I am blessed and fortunate to have many supportive loved ones and a very supportive group of co-workers. In my work as a pediatric peri-operative nurse at McLane's Children's Hospital in Temple, TX, I have been fortunate enough to meet many families with children undergoing this procedure and living their lives with Chiari Malformation Type 1. I see the importance of support and prayer during these difficult times. I ask that if you honor me by remembering me in prayer that you lift up also my loved ones, my work family and all individuals suffering from and affected by Chiari Malformation Type 1. This surgery is not a cure, it is one method of managing symptoms.

Chiari has no cure. It is often overlooked and misdiagnosed. Like myself, many people have had Chiari-related symptoms for years and have been told by many well-meaning physicians, friends and loved ones, "it's all in your head" (pun intended). It IS all in our heads..it is estimated that 3% of the population have Chiari Malformation Type 1. My desire is to increase awareness and provide information and support for my fellow Chiarians and their families. Living a life of feeling inadequate has had a severely detrimental effect on my life in many ways. A Chiari diagnosis provides validation...a moment of, "YES!!!--It's not just me...I'm not crazy!"..and then reality sets in..it is a lifelong disease..a foe that when unseen was to be endured, but now visible--to be conquered.

As for Chiari awareness--I wonder--What would happen if physicians connected the dots? In my lifetime I've had the following: adhesions (Left side of abdomen/colon), stress fractures (left foot, left tibial plateau), left clavicular lipomas, unexplained breast discharge, crumbling teeth, scoliosis--all requires surgeries, dental work, chiropractic visits.. No one ever connected the dots. Each of these can be related directly back to Chiari. Chiari was screaming inside of me..yet no one was listening..and I was ashamed, I felt like a financial burden and thought maybe I was crazy. I can trace my symptoms back to age 13. How many physicians failed to connect the dots in the past 31 years? At last count---18 different physicians have treated me and never even considered Chiari. This alone is a reason to increase awareness. In an effort to do this... I am working on a separate blog for Chiari Awareness, have started a Facebook page for awareness..and will be updating this site when those are available for viewing.

Thank you for reading, for praying and for any efforts you make to increase Chiari awareness.

Okay..enough for the holidays..back to work.

I'm becoming consumed with Chiari..Obsessed with Chiari Awareness...Treatment really shouldn't be THIS difficult or THIS expensive.

SO on with the tale...

Once upon a time there was a little girl with a big brain...
No..wait...that's not the story at all.
Let's go back a few months...

I get the call..
Nurse: "Ms. Robinson, Dr. Horner wanted me to call and tell you you have sheari malformation type 1 and he is going to send you to a neurologist. "
Me: "So I have SHEE ARE E?  How do you spell that and what is it? "
Nurse:"It's C-H-I-A-R-I..and I don't know what it is.. we will call you back with your neurology appointment. I'll call you back."

Me:  Mouth hanging open..quick Google while dialing Bob's number..
Me: "honey..I have SHEE are ee..its spelled CHIARI..Wait, I'll call you back..the Dr. is calling."
Bob: "Uh..okay"

Me: "Hello"
Nurse:  "Your appt is next week with Dr. H, they worked you in."
Me: "Okay, should I be concerned."
Nurse: "Dr. H will explain everything, don't worry."

Me: "Hey Honey, I have an appt for next week."
Bob: "I looked it up..it's pronounced KEE-ARE-EE. The only treatment is brain surgery."


So that was day one.
The days, weeks and months that led me to today have been exasperating. I've seen 2 neurologists, 3 neurosurgeons, 2 primary care physicians, 2 radiologists, 1 neurological ophthalmologist and 1 physical therapist.  I've been to Dallas, Denver and Houston. I've been told.."You were born with it..it's not the problem", "I can't do this lumbar puncture on you, it will kill you, I don't want to kill you on a Wednesday,",  "Dr. O hasn't had time to review your chart..although its been six weeks.", "we think you have a brain bleed, we need to transport you to the main hospital by ambulance"
and my favorite, "You don't look sick.."

I thank God for my wonderful primary care doctor who promised me to see me through this and told me to not give up until I found answers.

As I numbly read through symptoms on Day 1..I felt suddenly elated..VALIDATION. No..I was not lazy..and it wasn't all in my head...as my ex-husband stated one time, "no one can find anything REALLY wrong with you."  I thought perhaps I was a hypochondriac ...I thought that I was a misfit..
The only misfit here is the way my brain misfits my skull..

In weeks and months to come I will spill out my Chiari Tale in greater detail. Right now I have 26 days before surgery and have so much on my list to accomplish.  I now have a Caring Bridge site that I will link to this one and will plan to update both as time goes on. Also, I will be teaming up with the Chiari Warriors Foundation and adding my own informational site to FaceBook called The Constricted Cranium. My goal is to increase Chiari Awareness in the general public and in the health care world.  I can trace symptoms back to age 13 and have seen nearly 20 doctors since then..all who could have ordered a simple brain MRI had they been fully aware of the ways Chiari can present itself.  Thanks for reading..I'll meet you back here in the near future.

 http://www.caringbridge.org/visit/michelerobinson/mystory

I was recently diagnosed with Chiari Malformation Type 1. I'm not happy about it...and honestly..it stinks. I've been waiting for something to happen..to get real help..to find the right doctor before starting this blog. I wanted to bravely tell of my story with a happily ever after ending. Well, folks..it just ain't gonna happen...not today.. and not venting about it..well..it's making matters worse. I'm retreating inside myself, and that's no bueno for me. So in the days and weeks to come..I'll spill my Chiari story..hopefully into a tale that will someday help someone else with their journey.   For now..at least I got started..that's a big step, so now...now I will try to sleep..comforted by the thought that I made a step, I started a new blog...I won't be a victim hiding in the dark..never again..Chiari won't beat me.