I AM A SURVIVOR

Nothing like a HTML redirect script error to remind me that I need to spend some more time blogging ~ I've been thinking a lot lately about returning and there's no perfect time like the present.

Living day to day as a brain surgery survivor can sometimes feel like a heavy burden, especially so as I creep closer to my SIX year post surgery date on December 3rd. I thought for sure I would cherish every day after surviving being a breath away from dying. Sure, some days I am thankful for being alive ~ happy for the days when I'm not battling an epic headache or trying to maintain composure and balance on a vertigo infused day. But mostly, I've gotten on with my life ~ trying to fit in and fool myself into thinking I'm normal. Then the reality check hits me ~ YOU ARE A SURVIVOR ~ YOU ARE ANYTHING BUT NORMAL! Live it ~ feel it ~ soak it up ~ then get started on your bucket list and sharing your story.

I'd like to think that I'm one of the few lucky ones who has been able to get on with my life. I've heard countless stories of other Chiarians who can't get out of bed every day  ~  live their lives a slave to pain and medications ~ have countless surgeries only to feel worse and not better for their pain and suffering.  There must be something I can do to speed along the genetic testing process to finally find a cure for Chiari. If the mutant genes can be located it would speed up the agonizing slow pace of finding a cure.

I read this week that the cause of ALS has been found ~ wouldn't it be miraculous if the same amount of research was being done to find the cause of Chiari Malformations? I don't know what the statistics are for Chiari related deaths annually, but I am hearing more and more stories of Chiarians dying post surgery. Take this for example:

Sudden unexpected nocturnal death in Chiari type 1 malformation and potential role of opioid analgesics

Abstract

Background: Chiari malformation type 1 (CM1) is a common congenital anomaly of the craniocervical junction. CM1 is reported to run a usually benign course and patients typically experience no symptoms or chronic, slowly progressive symptoms. However, recent reports indicate that a subset of patients with CM1 may present with acute deterioration and sudden unexpected death (SUD). We report a case of SUD during sleep in a young man with CM1, which we believe was related to the administration of common and therapeutic doses of narcotic analgesics for the management of pain. We will clarify the pathophysiology of acute deterioration and SUD in CM1 and the possibility that the adverse effects of opiate analgesics likely were the leading cause of death in our patient.
Case Description: In this review, we present a 29-year-old male with worsening headache secondary to previously diagnosed CM1. The patient died suddenly and unexpectedly after administration of common and therapeutic doses of narcotic analgesics for the management of pain. 

Conclusion: The mechanism(s) of acute neurological deterioration and sudden death in patients with CM1 remains poorly understood. We believe the rapid fatal deterioration in our patient following administration of opioids suggests that this category of medication may cause sudden unexpected "neurogenic" cardiac death in CM1 patients by inducing sleep-related breathing difficulties and associated hypercapnia. Hypercapnia by further increasing intracranial pressure can result in a sudden pressure-induced decompensation of the cardiopulmonary control centers in the brain stem and cause instantaneous cardiorespiratory arrest.

 This is serious stuff and yet this is the first time I've even seen the term hypercarpnia. Probably not a coincidence at all that when I was a teenager my general practitioner told me that I had too much carbon monoxide in my blood. He told me to breathe more ~ WHAT? Really? I just thought I was a stressed out teen prone to panic attacks. Now I'm thinking the signs were there all along. I've always had trouble remembering to breathe. I SIGH heavily and frequently ~ not due to boredom, I just need more O2 in my system due to holding my breath subconsciously for too long between breaths. So who's tasked with studying chiarians who don't breathe enough?

What about this theory of mine ~ I recently found out that I have measurable Neanderthal DNA.

I can't be the only one who's looked at how different Neanderthal cranial vaults looked compared with modern humans. We are all evolving as the generations pass along DNA from the previous generation. A common phrase heard in the Chiari community is:

My Brain's Too Big For My Head!

 or

 Too Much Brain To Contain

Soft tissues change quicker than bone ~ do the math ~ connect the dots. Just saying ~ there are answers out there.

I could go on for hours ~ but I'll save it for another post. Glad to be blogging again even if it's just for me. My hope is that I've lit a spark in just one of you out there to look into your medical background and dig. The answers are there ~ we just need to figure out who to share these ideas with so that someone with a brain can find a way to shut off that lethal mutating Chiari gene.

B.C. ~ Before Chiari ~

Yesterday I was reading a blog update from another Chiarian and they referred to their life before chiari as "B.C." ~ so I guess that makes my life after decompression as "A.D"! Because truth be known, I was born with my brain tail ~ it's been there all along it just took me almost 36 years to discover the troublemaker.

I was trying to remember the most recent time I felt at peace with myself ~ when I was sure that my smile was not lost in the depths of my soul. Cape Cod ~ Summer of 2005 ~ It was our first of many annual summer vacations ~ I was overwhelmed with the beauty of the ocean on the East Coast. I distinctly remember the next year when we returned ~ I had a headache that was present the whole time we were there ~ something was just not right ~ I would discover my Chiari only a month later.

I know in my heart that "A.D." I will be back on the road to finding my smile again ~ finding peace and wholeness within myself ~ strength ~ renewed hope ~ a zest for life. You see ~ right now I am just holding on ~ taking one step at a time ~ or the enormity of what is just around the corner will consume me.

Deep Inside This Armor ~ The Warrior Is A Child

The last couple of days have been really rough on me ~ nausea /vertigo/ headaches / trouble breathing / insomnia ~ good to be able to see the first surgery on the very near horizon. I got FOUR letters from my insurance company today. My heart instantly started to race as I was filled with anxiety ~ will they pull the rug out from under me just when I thought I was actually going to have my surgeries done?

My fears were instantly quelled as I read them one by one ~ approved, 3D CT Scan, approved inpatient surgery 2/1/08, approved outpatient procedure 3/6/08, approved inpatient surgery on 3/7/08 ~ all signed by the same medical director. If I could, I would drive over there right now and give Mr. Medical Director a huge hug!!!

So ~ getting my ducks in a row ~ results from the echo cardiogram were normal. Taking it day by day ~ drawing strength from my faith ~ daily fighting battles against the doubt and fear in my head.

The Warrior is a Child by Twila Paris

Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing, strong beyond my years
But they don't see inside of me, I'm hiding all the tears

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
Deep inside this armor - the warrior is a child.

Unafraid because His armor is the best
But even soldiers need a quiet place to rest.
People say that I'm amazing - never face retreat
But they don't see the enemies that lay me at His feet.

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and look up for a smile
'Cause deep inside this armor

Deep inside this armor
Deep inside this armor
The warrior is a child.

Armadillo

What do you do when an armadillo shows up in your dream? Random ~ I know ~ but not so random considering I am a Native Texan and I am the proud owner of an armadillo purse! Until I looked up some info on these prehistoric looking creatures I never knew there were so many types of them. I am pretty certain that I have only seen one species ~ the nine banded armadillo which happens to be the state small mammal of Texas.

I remember seeing a special about bizarre facts about animals and the armadillo was mentioned. This is absolutely fascinating ~

"Although breeding occurs in July, the embryo remains in a dormant state until
November. Four young are born in a burrow in March. All four young, always of
the same sex, are identical quadruplets and developed from the same egg. They even share a single placenta while in the womb. Armadillos are the only mammals
in which multiple young form from a single egg with any regularity. "

This post is random ~ I know ~ but I have a point. I looked up the meaning of the armadillo totem and it symbolizes boundaries, being grounded and self protection. I could use a good dose of being grounded and protected!

It's Not Rocket Science ~ Just Say "Yes" & We Will Move On

Last weekend NBC aired the Best of Will Ferrell SNL skits ~ the Harry Caray one is one of my absolute favorites. He is diabolically random and he makes me laugh ~ good stuff!

Hey!!! What's your favorite planet?? Mine is the sun! I like it because it's like the king of planets!

What if the moon were made of bar-b-q spare ribs ~
Hey ~ what about that Mad Cow Disease?

Time That Is Given To You

Frodo: "I wish the ring had never come to me. I wish none of this had happened."
Gandalf: "So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us. There are other forces at work in this world Frodo, besides the will of evil. Bilbo was meant to find the Ring. In which case, you were also meant to have it. And that is an encouraging thought." ~ LOTR

"The world is changed. I feel it in the water. I feel it in the earth. I smell it in the air." Galadriel ~ LOTR

Take out the word 'ring' and replace it with 'brain tail' ~ I wish I malformation was ~ I wish I wasn't burdened with filling out wills and signing health care didn't even know what a chiari malformation was! Wish I wasn't dealing with filling out my will and health proxy's ~ but it's my life ~ like it or not. Somehow ~ the quote above is encouraging ~ I was meant to have it ~ I have enough strength to bear the load ~ to be able to stand up underneath the weight of the burden.


In the same breath ~ I know in my heart that a time of healing is just on the horizon.

Exhausted

The pajama/sleepover was a huge success and I absolutely couldn't have pulled it off without the support of my family! Saturday started out as a typical ~ "I should stay in bed all day long" ~ kind of day. I awoke with a pounding Chiari headache and I was having a lot of pain in my legs which made it even harder to walk much less stand for several hours at a party.

My family took over for me for a couple of hours ~ Mom shuttled the cheerleaders around to their game ~ my husband feverishly spruced up the house and took care of picking up the cake and other party essentials. I took some heavy duty meds and took a nap for a couple of hours. I was having a battle with my brain tail ~ telling it to cool it's jets ~ not today ~ it wasn't an option for me to miss this party that I had planned ~ my presence was needed. Mind over matter ~ I am constantly amazed at the power of the mind to ignore pain and focus on what needs to be done.

Lessons learned ~ if you send out 18 invitations ~ expect them all to come to the party! Well ~ actually 2 couldn't come, but add my daughters into the count ~ that makes 18! Half of them went home at 8pm ~ the rest stayed up until 1am and were up at 7am ~ the party was a success. Mission accomplished.

Operation Sleepover Survival Mode

I think I seriously should have my head checked! I had a moment when I thought the only thing that mattered was to give my youngest daughter an uber pajama/sleepover party. My heart was in the right place, but my head, not so much!

So, I enthusiastically sent out 18 invitations ~ EIGHTEEN! Remembering b-day parties in the past I knew I could count on about half to RSVP and then some more would drop out at the last minute. Well, as of last night ~ it looks like 16 kids are coming ~ not counting my two darling daughters.

So ~ with the help of my dear husband and fun & with-it Mom, we will manage to pull off the party of the year! Hey ~ if I actually survive the weekend, maybe brain surgery won't look so daunting!