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.

Outside the Box

A picture says a thousand words, right? I've made the photo above my screen saver at work. It's a constant reminder to think outside the box and to look up every once in a while. So many times a day I find myself a victim of brain farts ~ ooo shiny! What was I just thinking about? I had a thought and just like that, poof! It's completely evaporated.

So, like I was saying, I've been thinking way outside the box ~ looking for a unicorn or a zebra in a herd of horses. I saw my most favorite endocrinologist in the world last week and after listening to me rattle off my numerous growing neurological chiari/cranial settling related symptoms, he emphatically told me that I was skating on thin ice. That's always a wake up call when you hear that from someone that you trust in the medical community. ~ sigh ~

After digesting my doctors concerns for my health, I took a deep breath and shared this bizarre, outside of the box idea with him to help validate that my idea wasn't completely off the reservation. I've been thinking lately, most of my symptoms lately: migraines, vertigo, trouble breathing, insomnia... are all related to cranial settling. After seeing my Chiari friends go through fusion surgery only to have the fusion rods re-done just a few years later, I really want no part of that routine. With that said, I vividly remember my Invasive Cervical Traction procedure that I had the day before my brain surgery.

At one point during the procedure, even through the twilight haze, I remember Dr. M discovering that when they lifted my head up and over and then down there was a remarkable change in symptoms and CSF flow. He was very intrigued since he had not seen a positive result before with that set of motions. So, I was thinking, if this procedure helped me to feel pretty good for a few years, why can't I go in for this type of surgical procedure again? Sure, I would miss a few days of work, but it's an outpatient procedure with no recovery time. How crazy would it be to at least start a dialogue with my doctors to see if this is a possibility.

Shockingly enough, my doctor totally was on board with my idea and didn't think it was crazy at all.

I feel like I keep buying time ~ waiting for technology to advance, looking for a less invasive more long lasting solution. I know there's no cure for Chiari ~ but this girl is still searching for a silver lining ~ a sliver of hope....

Completely UnRemarkable

Current Scan 2012

vs
Original scan 9/26/2006

According to the Dictionary, here's the definition for UnRemarkable: not worthy of note or attention;

Lacking distinction; ordinary. 

I was hopeful, hoping the MRI would reveal something ~ anything ~ a new revelation that would explain away the pain in my head. Most people would pray for a clean bill of health with nothing to write home about. But I'm not a part of that 'most people' crowd anymore. Brain surgery kinda stole that from me.

I was driving to my neuro surgeon this morning, looking forward to seeing the very first surgeon I met after been diagnosed with Chiari in 2006. A book on tape was playing in the car and I was thinking about my answer to a question asked: 

"When everything is stripped away from you, what gives you the strength to keep on going?"

 If you had asked me this question 6 years ago I wouldn't have hesitated before answering, my faith in God, of course. He loves us, cares for us.... but today, I'm not so sure.  One thing did come come to mind though ~ I can't just submit to the pain in my body ~ I've got Chiari friends both far and near who need me, who depend on me for friendship and guidance. As if an unspoken prayer for validation was asked, as soon as I checked in at the doctors office, I sat down and logged onto my email to pass the time as I waited for them to call my name. There at the top of the new emails in my inbox was an email from a very dear Chiari friend. We had exchanged a couple of heart to heart emails over the past week and she was concerned about me. Lil ole me ~ out of all the others out there who clamor for her attention. I immediately burst into tears. She gets me ~ we are in the same medical predicament ~ surgical candidates and yet not wanting to go back to surgery just yet.

What was I doing? Yes, I was following doctors orders by getting another baseline MRI, but who was I kidding? I'm a TCI patient ~ they are without a doubt the best of the best in the world and are celebrated Chiari gurus. How could I possibly expect anyone else to understand my complicated condition? So long story longer, I was greeted by the PA of the office and not the surgeon I was looking forward to seeing again. Nothing was found on my MRI that signaled a need for surgery. He recommended I see a pain management doc and a neurologist to help me figure out what steps to take to get an handle on my pain.

I feel like a college grad who was sent back to Kindergarten again ~

If You Want Me To

What inspires you to write, to share life's struggles? For me it's pain ~ pain~pain~pain.  For reasons I can't explain, I keep coming back to the same crossroad. For two weeks now I've been plagued with crushing Chiari headaches. The yo-yoing barometric pressure is mostly to blame along with stress of life. 

But what's the solution?  Unfortunately, there is no grand cure-all solution for me as a Chiarian. I'm still not convinced that a fusion surgery is the way to go either. Entertaining the idea of going to see a local neuro-surgeon to discuss the options of shunt surgery to relieve CSF pressure in me head...if you want me to...

Peter/Olivia

What would life be like without your presence in the lives of others? The fourth season of FRINGE is centered around a world without Peter Bishop ~ I get it, this is part of the bigger story ~ but that doesn't mean I like it one little bit!

Actually, I've thought a lot about this theme ever since I was diagnosed with Chiari ~ what would life be like without me on this earth anymore? The concept is a hard one to embrace too closely without letting it consume me whole. I have a questions for other Chiarians and other assorted brain surgery survivors.

How did you cope with the overwhelming feeling that you just might not make it back from brain surgery?

 I used to think that I was really good at coping, pushing through very difficult times, but now I'm not so sure. The physical scars, although healed up nicely, will always remain on my skin as constant reminders of the battles I have survived. Now, almost three years post brain surgery, the emotional scars are bubbling up to the surface. Sure, I survived, I'm living, breathing, carrying on at the thing we called life...but at what cost?

I'm not the same person today that I was prior to my Chiari diagnosis. On that profound day,
September 26, 2006, I think I built an instant fortress around myself ~ guarding my emotions, protecting my heart.  I think a big part of me wants to walk away from everything prior to surgery and start a new.

The surgeons prepared me for the physical pain I would endure, the long recovery road, but they didn't prepare me for a total fall out of who I am and who I am becoming. This is probably totally gibberish to most readers out there, but I have a feeling a bunch of you know exactly what I am talking about.

Skull Design & Root Causes of Neurodegenerative Diseases

(Yeah ~ you've seen that gorgeous skull before ~ it's my very own) I stumbled upon the coolest blog this week ~ It's actually titled:

Alzheimer's, Parkinson's and Multiple Sclerosis, Getting to the Root Causes of Neurodegnerative Diseases

I did a search for Chiari within the blog and found numerous posts. Just glancing through some of the blog posts awakened the researcher in me like Rip Van Winkle after he snoozed way to long!

Here are a few snippets from the blog ~ Seriously, I think I could read the whole blog in one sitting and only grasp one-eighth of the meaning ~ it's deep and scientific and he's talking about us Chiarians ~ very interesting ~ what are your thoughts on the matter?

all humans are predisposed to the brainstem sinking into the foramen magnum due to its location beneath the skull.

Typically, the brainstem is surrounded by cisterns filled with cerebrospinal fluid (CSF) which allows the brain to float above the foramen magnum and base of the skull thus preventing contact with the bones of the base and foramen magnum. In a Chiari malformation, it is typically the tonsillar portion of the cerebellum that gets trapped in the foramen magnum.

the location of the brainstem and cranial nerves in relationship to the base of the skull and foramen magnum. Their location makes them highly susceptible to compression by either an increase or a decrease in CSF volume in the cisterns.

A short length in the base from the front to the back of the cranial vault, predisposes the brain to crowding and a condition called Chiari malformations in which the cerebellum or brainstem gets pushed down into the foramen magnum. Chiari malformations can block both venous blood and cerebrospinal fluid (CSF) pathways causing CCSVI and hydrocephalus type conditions. Chiari malformations used to be considered as a childhood problem for the most part. However, recent studies show that trauma can cause Chiari malformations in adults. What’s more, Chiari malformations have also been associated with multiple sclerosis.

And did I mention all of the pictures and diagrams on the site? Amazing!

Rogue DNA

One of my resolutions for 2011 is to start actively blogging again. I have about 80 drafts of blogs just waiting to be posted ~ many a time I have started with great intentions only to loose my train of thought in mid sentence...

About a year ago I found a website looking for Chiarians for a genetic study. Of course I definitely wanted to be included in the study and inquired as to what was involved. After a long conversation with the study's coordinator I found out that there would be some paperwork inquiring about the medical history of me and my family and a phone interview. Then, there would be a traveling phlebotomist that would eventually be in my area, come to my home and take blood samples from all family members.

Given the chance to contribute to research and science for the chance in finding a cure for Chiari ~ I was beyond thrilled to share my DNA. Although many doctors are in denial, Chiari couldn't possibly be genetic! Where's the proof? ~ WE know that it most certainly is and this genetic study will further prove the connection.

The Genetics of Chiari Type I Malformation is still looking for volunteers ~ you, too, could contribute to science and possibly help us find a cure for CHIARI! I have printed the details below ~ If you have any questions, please feel free to contact me.

Genetics of Chiari Type I Malformation

The Duke Center for Human Genetics is actively recruiting families who have TWO OR MORE family members with Chiari type I malformations, with or without syringomyelia. These family members must be related to each other by blood, and BOTH must be willing to participate. At the current time, we are not able to enroll families in which the only diagnosed members are a parent and child. If the family meets these criteria and wants to receive study participation information, please contact the study coordinator at 1-877-825-1694 orchiari@chg.duhs.duke.edu. More information can be found on our website

http://wwwchg.duhs.duke.edu/diseases/chiari.html.

It’s Just the Dark Before the Morning

Two years ago today I had my decompression surgery for my Chiari Malformation. What a defining moment in my life! I still remember that moment when I drifted out of the anesthesia stupor ~ realizing that I had survived brain surgery. Of course I did ~ my surgeons are the best in the world and I had an army of people praying for me. Surviving was easy ~ getting on with living was going to be much harder. Or as Andy said in the Shawshank Redemption ~

Get busy livin', or get busy dyin'.

Living with an incurable disease just plain bites! People assume, you get this big bad horrifying brain surgery, then you are cured. Unfortunately, not the truth at all when it comes to Chiari. I have been waiting two long years to get a bone density test to prove that I am finally building bone density up again. You see, I narrowly escaped having the fusion surgery done at the time of my decompression. Since my bones weren't strong enough at the time, my surgeons thought it would be best to wait.

So, last week, I got the results of my test and my bones have been strengthening again ~ hooray and 'SHARK FARTS!!!' at the same time. My endocrinologist suggested I go ahead and make an appointment with my neurosurgeon ~ he wants me to go ahead and get the fusion while my bones are strengthening. Why was this decision such a no brainer when I was 'in the zone'? The further I get from the OR ~ the less I want to go back there. Really pisses me off ~ I don't want to be the one who has to make the decision ~ but I am the only one who can. Who has the time and the resources to schedule brain surgery, time off of work and time to heal?? And I am still not wholly convinced that fusion surgery will alleviate my symptoms. Why can't I just be satisfied with living with my brain tail? Because I am a fighter and will not turn and run away ~ a show-down is inevitable ~ some day soon. ~ SIGH ~

In the meantime, while I stew in deep thought and contemplation ~ searching for an answer lit like a Hollywood billboard ~ if you know me and know that I having a bad Chiari day ~ please don't avoid me ~ make me laugh ~ it's the best medicine for the soul. Pressing on ~

Before The Morning ~ Josh Wilson

Do you wonder why you have to
Feel the things that hurt you
If there’s a God who loves you where is He now

Maybe there are things you can’t see
And all those things are happening
To bring a better ending

Someday somehow you’ll see you’ll see

Would you dare would you dare to believe
That you still have a reason to sing
Cause the pain that you’ve been feeling
It can’t compare to the joy that’s coming
So hold on you gotta wait for the light
Press on and just fight the good fight
Cause the pain that you’ve been feeling
It’s just the dark before the morning

My friend you know how this all ends
You know where you’re going
You just don’t know how you’ll get there
So say a prayer

And hold on cause there’s good for those who love God
But life is not a snapshot
It might take a little time but you’ll see the bigger picture

Once you feel the weight of glory
All your pain will fade to memory

It’s just the hurt before the healing
Oh the pain that you’ve been feeling
It’s just the dark before the morning

Sleep Study

One of the side effects of Chiari is massive sleep deprivation caused by many factors. My central nervous system continues to be compromised due to permanent nerve damaged cause by my brain tail and continued brain stem kinkage.

At night, I go to bed like every other person on the planet ~ but I don't sleep ~ and if I do happen to fall asleep after hours of tossing and turning I don't stay asleep long. Years of sleep deprivation was taking it's toll on me physically and mentally. I was finally motivated enough to do something about it. In late September, I signed up for a sleep study to determine if I actually have sleep apnea and/or other sleep related disorders that might be preventing me from getting a good nights rest. I had heard stories ~ I was prepared for the cameras on me all night and maybe a handful of electrodes to monitor my sleep patterns ~ but nothing prepared me for the study itself!

Shortly after I arrived at the sleep clinic they stuck electrodes, with wires connected to them, all over my body. They were on my scalp, in my hair, on my forehead and chin, on my collarbone, chest, waist, legs ~ you get the picture ~ I was wired for everything. When it came time to actually turn in for the night, they strapped tight elastic bands around my chest and torso to measure any movement throughout the night. They they tapes a microphone to my neck to pick up any sounds I might make ~ followed by these horrible tubes up my nostrils and don't forget the ever popular pulse-oxygen meter clamped on my index finger. Then they turn out the lights and tell you to get good nights sleep ~ SERIOUSLY????

Did I mention that I watch way too many sci-fi shows ~ I was totally psyching myself out with all the wires on my body ~ good thing they didn't stick anything in my veins or I would have high tailed it out of there. I was already convinced that I was sending signals to the Mother Ship.

Needless to say, it was a very long seven hours before they woke me up to go home ~ I don't know how long I laid in bed tossing and turning (gently at least so I wouldn't rip out all the wires), but I know it was at least a couple of hours before I fell asleep. My follow up appointment is in a couple of weeks. I am very curious to hear what they found out about me and hope that they have a plan of action for me.

Funny thing is ~ I feel like I have not slept a full night in a very long time ~ maybe about 8 or 9 years ~ but losing my job a month ago changed things. For the first time I am sleeping again ~ ironic ~ maybe I was under so much stress with my other job that I had no idea it was keeping me up at night. So, with that huge burden lifted I am finally getting a bit of relief. Did I mention that even with the new recent sleeping at night ~ I am still dog tired ~ true story!

A questions to chiarians out there ~ how wonderful would it be to take away this symptom for good ~ how do you think you would feel if you got 8 hours of solid, uninterrupted sleep every night? Do you think it would make it easier to cope with the demands of constant bombardment from our braintails?

To Know You ~

It's been one of those weeks ~ a weeks filled with exhaustion, headaches and vertigo. But wait, don't forget the day I was a breath way from becoming a splat on the pavement on the freeway. It's been a while since I have felt the hand of God surround me and move me silently away from danger. Message received ~ it's still not my time ~ I have work to do here.

I am digging deep and trying to remember how far I have come ~ to not brush off or minimize all that I have survived so that I can focus on encouraging those who live with trepidation.



CASTING CROWNS - To Know You

To know you is never worry for my life, and
To know you is to never to give in or compromise
To know you is to want to tell the world about you
Cause I can't live without you

To know you is to hear your voice when you are calling
To know you is to catch my brother when he is falling
To know you is to feel the pain of the broken hearted
Cause they can't live with out you.

More than my next breath
More than life or death
All reaching for, I live my life to know you more
I leave it all behind, you are all that satisfies
To know you is to want to know you more
To know you is to want to know you more

To know you is to ache for more than ordinary
To know you is to look beyond the temporary
To know you is believing that you will be enough
Cause there is no life without you

More than my next breath
More than life or death
All I'm reaching for, I live my life to know you more
I leave it all behind, you are all that satisfies
To know you is to want to know you more
To know you is to want to know you more

All this life could offer me, could not compare to you
Compare to you
And I count it all as lost, compared to knowing you
Knowing you

More than my next breath
More than life or death
All I'm reaching for, I live my life to know you more
I leave it all behind, you are all that satisfies
To know you is to want to know you more
To know you is to want to know you more

Compared to you
Compared to you
And I count it all as lost, compared to knowing you
Knowing you
And I count it all as lost, compared to knowing you
Knowing you

Brain Injury

In light of a disturbing article I read today about a woman who complained of headaches for a very long time ~ she was constantly dismissed ~ then she passed away ~ I looked into the definition of a brain injury. I feel like I have been on the sidelines for a while now, neglecting my blog and my readers and I am trying to get back in the groove and post some helpful info out there on the web. Here's a good link for symptoms of a brain injury broken down by parts of the brain. This is the piece that really grabbed me:

Brain Stem: deep within the brain

•Decreased vital capacity in breathing, important for speech.
•Swallowing food and water (Dysphagia).
•Difficulty with organization/perception of the environment.
•Problems with balance and movement.
•Dizziness and nausea (Vertigo).
•Sleeping difficulties (Insomnia, sleep apnea).

Cerebellum: base of the skull

•Loss of ability to coordinate fine movements.
•Loss of ability to walk.
•Inability to reach out and grab objects.
•Tremors.
•Dizziness (Vertigo).
•Slurred Speech (Scanning Speech).
•Inability to make rapid movements.

---------------------------------------------------

Seriously, I think it's safe to say that many of those still apply to me. I still have to remind myself daily that I have a serious brain malformation that caused irreversible damage/injury to my brain, and with high intercranial pressure and cranial settling, it continues to server up good doses of pain and destruction. Seems like the brain stem is really stressed out by the cranial settling ~ all I can do is wait for my bones to dense up ~ is that even really a word??? get more dense, that's better.

I am thrilled that Chiari is making the headlines more and more ~ the general public is getting an education on Chiari Malformations, but the stories are breaking my heart! Please, if you or someone you love is complaining of constant headaches, encourage them to find a doc who will give them so concrete answers.

Embrace

How do I make peace with someone who is constantly betraying me? Just when I think we can be friends and work together in harmony ~ SHARK FARTS ~ there she goes and does it again!!! I continue to be disappointed, over and over again. How long am I willing to put up with trying to rely on someone who isn't dependable anymore?

I am sure by now you are wondering ~ who is she talking about and why is she still friends with this person ~ right? This has to be the most challenging relationship I have been in and it's a lifelong bond. Believe me, if I could take a vacation from my brain, even for an hour or two, I totally would!

I haven't blogged in a while and don't want this post to seem completely a downer ~ so let me go over the facts first:

1. I have a Chiari Malformation of which there is no cure (not yet...)
   
2. I had two surgeries in 2008 to put a halt to the progress of irreversible neurological damage caused by a kinked brain stem and my brain hanging out in my spinal column
3. I have cranial settling and need fusion surgery, but am battling osteopenia to strengthen my bones enough so that I can eventually get the fusion surgery
4. When I was released from the hospital after my brain surgery, my brain surgeon gave me this piece of advice. What ever you do ~ don't get in a car accident!
5. My car was rear-ended about a month ago when I was sitting at a red light.
6. Headaches and vertigo have moved in again

So you'll find me somewhere in the middle ~ again. I don't know how this keeps happening, but just when I think I have moved out of the middle, I find myself caught here again. I am certain that I don't want to go back and it's unclear where the next path is. This might explain why my blog has been quiet for quite a while sometime. If you look at the big picture, I am a poster child for successful tethered cord and decompression surgeries. I healed beautifully and gleefully went back to work within 2 months. My quality of life has greatly improved ~ some days I almost feel 'normal'.

Then I have a day like today when it's all I can do to keep from retreating to the bedroom, close the blinds and climb under the covers ~ praying that sleep will wash away the headaches. But I press on ~ I have a physical therapy session for upper body strength and balance in an hour. Maybe after that I can take my heavy duty pain meds...But this is only a temporary fix. What does this mean long term? Do I wait until December ~ see if my bone density increased ~ then what? Do I schedule a fusion surgery for the spring? If I get the fusion done will it actually help my headaches or make them worse?

So at this point ~ I am going in the direction of welcomed distractions ~ send them my way ~ please! One day at a time ~ I keep setting mini goals and keep putting things in my calendar so that I have many things to look forward to. Honestly, the best medicine for me right now is time with friends ~ laughter is a wonderful cure. Now, can we bottle that up and cure chiari with it????

***What's up with the zebra you ask? Well if u look at a zebra it's pretty much a horse ~ except for the stripes. Chiarians are kinda like Medical Zebras .

Healing Hands of God

My eyes have been opened again by the lyrics of another song. Healing is an organic process ~ it ebbs and flows; but I haven't thought about this question in a while: Do you want to be healed? YES YES YES a thousand times ~ YES! I have to reach out and receive the healing hands of God.

Next comes the tricky part ~ what parts of my life need healing? Well the obvious in the physical ~ next comes the emotional piece. As the healing process moves forward, more layers are peeled back and more brokenness is revealed.

Just the other day I was chatting with a chiari friend of mine. We have never met in person, but I felt an instant sisterhood with a woman who has decided to take a leap of faith and schedule her decompression surgery this month. I am so blessed to have two surgeries behind me and have gained immense perspective on the big picture of living as a Chiarian. I love being able to share my chiari journey and encourage those along the way. I don't have all the answers, but I do know that putting everything in God's hands ~ deep breath ~ makes it a little bit easier to survive each day. I am greatly encouraged by the faith of those around me who continue to let the Lord guide their life!

How are you encouraged? We all have our responsibilities ~ we have jobs to go to, bills to pay, meetings to attend, relationships take time and energy. In a perfect world I would make a living helping other Chiarians get through life, especially the difficult days. Life can seem utterly impossible some days ~ I know, I have those days, still. although they are fewer and farther between now. I encourage you to keep in touch with your friends and let them know that they are not alone. Together, we can make this Chiari journey an adventure ~ may you be renewed today with the hope that one day, there will be a cure for Chiari

Healing Hand Of God ~ Jeremy Camp

I have seen the many faces,

I fear in the pain.

I have watched the tears fall plenty,

From heart ache and strength.

So if life's journey,

Has you weary and afraid.

There's rest in the shadow of his wings.

I have walked through the valleys,

The mountains and plains.

I have held the hand of freedom,

It washes all my stains.

If you feel the weight of many trials,

And burdens from this world.

There's freedom in the shelter of the Lord.

Chorus:

I have seen,

The healing hand of God,

Reaching out and mending broken hearts.

Taste and see the fullness of His peace,

And hold on to what's being held out.

The healing hand of God.

I have touched the scars upon His hands,

To see if they were real.

He has walked the road before me,

He knows just how I feel.

When you feel there is not anyone,

Who understands your pain,

Just remember all of Jesus' suffering.

(Chorus)

Cast all your cares on Him,

For He cares for you.

He's near to the broken and confused.

By His stripes,

Our spirit is renewed.

So enter in the joy prepared for you.

(Chorus)

The healing hand of God (x2)

And hold on to what's being held out (x2)

The healing hand of God

Oh Oh Oh Oh

Brain Tail Comparison ~ One Year Post Decompression

Sorry I have been remiss in posting about my one year post decompression doc appt that I had back on 1/29/10. I have attached MRI photos of my brain ~ the one on top is the current one and the one on the bottom was taken when I had a herniation of 17mm back in September of 2006. There's a tiny bit of cerebellar herniation but not enough to write home about ~ I love the proof that they actually removed my top vertebrae and a big chunk of my skull and you can clearly see it in the image.

This past visit with my neurosurgeon was not very highly anticipated ~ in fact it was quite the bitter pill to swallow. So here's the positives first:

• I am doing well enough to hold down a full time job


• I am functioning at a pretty high level


• I can care for myself without needing any assistance

And here's the rest of the story:

• My neurological functioning has actually deteriorated a bit since May of 2009 ~ I flat out failed a couple of my neuro tests that day. You know the one where you stand with your feet together ~ hold your arms straight out in front of you and close you eyes ~ well I immediately fell backwards.


• Failed to walk heal to toe without falling off the invisible tight rope


• Confirmed that I have stenosis


• Confirmed that I have degenerative disk disease and will probably need disk replacement in my back at some time in the future


• Chiari headaches are more frequent again


• Vertigo is back with a vengeance


• Don't forget the brain fog from hell

With that said ~ I have finally surrendered to modern medicine and am committed to taking Diamox to see if it will get my chiari headaches under control. ~ SIGH~

I have mixed feelings about my condition ~ yes, I have Chiari and even with two major surgeries ~ to prevent any further neurological damage I still have symptoms. I am learning to be at peace with this ~ enjoying the days that I feel good and to not be so hard on myself when I feel like I've been run over by a really big honkin truck!

Hidden Treasures ~ What's In Your Coat Pocket?

Hidden treasures ~ those little unexpected surprises we discover ~ look around the floorboard of your car (you might even find a two day old burrito with a lil bit o carpet lint on it) ~ all kind of treasures between the sofa cushions, too. What about your winter coat pocket? When was the last time your looked in there?

Snow fell this weekend and I decided it was OK to go ahead and put on my wool coat ~ the thermometer read 27 degrees this morning. As I was putting on my coat I noticed there was something in my pocket ~ I reached in and pulled out the contents ~ ear plugs ~ lovely. Wow ~ it's been over a year since I wore my grey coat ~ I can tell just by pulling out those little bits of yellow foam. These must have been left over from my last MRI right before my decompression last December.

Funny how an object can cause a wave of emotions to wash over me in an instant. I would have preferred to find a stick of gum, maybe some loose change/dollar bills, a grocery list. Like a sage friend of mine told me today ~

'Maybe God wants you to remember that time in your life and He doesn't want you
to EVER forget.'

Message received ~ What will you find in the deep pockets of your winter coat? Maybe someone is trying to get a message across to you, too.

It's the Climb

Often, I get swept away in the flurry of activity in my life ~ it helps me to not focus so much on the tireless climbing. Chiari never takes a vacation ~ the brain tail might sleep in late after a full day of inflicting pain, but awakes soon enough. In light of our cheer competition last weekend (that's another post) it's hit home more than ever that life is all about the climb.

Living with Chiari is a climb, but along the way lives have been touched ~ healing is going on all around us. I am trying to re-focus and stop looking behind at the past and ahead at the future and stay in the moment ~ the now ~ the ground beneath me. Won't you join me?

THE CLIMB ~ Miley Cyrus

I can almost see it, that dream I'm dreamin but,

there's a voice inside my head saying, you'll never reach it.

every step I'm taking every move I make feels lost with no direction, my faith is shaking,

but I, I gotta keep trying I gotta keep my head held high

There's always gonna be another mountain I'm always gonna wanna make it move

always gonna be an uphill battle and sometimes I'm gonna have to lose it

ain't about how fast I get there ain't about what's waiting on the other side

its the climb

The struggles I'm facing

the chances I'm taking

sometimes might knock me down but

no I'm not breaking

I may not know it but these are the moments that

I'm gonna remember most yeah just gotta keep going and I

got be strong gotta keep on pushing on cuz

There's always gonna be another mountain

I'm always gonna wanna make it move

always gonna be an uphill battle sometimes

I'm gonna have to lose ain't about how fast I get there

ain't about whats waiting on the other side

its the climb

keep on moving keep climbing

keep the faith babe

its all about its all about the climb

keep the faith keep your faith

I Can Only Imagine

Blogging has been a way for me to express what I cannot vocalize and I am trying to get back in the swing of things by blogging more. As my one year post decompression date is beginning to appear just over the horizon I seem to be doing a lot of reflecting. There were a lot of blogs that I started and they ended up in my draft box. This one I actually started on 10/12/07 ~ I thought today would be a good day finally post it.

Facing fear ~ staring it in the face ~ thoughts of death and dying have come up for me, for obvious reasons. But you see, to die would be devastating for my family and friends, but for me, I can only imagine.

When I wrote my thoughts about staring death in the face, I hadn't even been detethered yet ~ but I was processing the imminent fear that comes when facing brain surgery. I look back and smile knowing that putting it all out there, expressing my fear, laying it all down for the Lord to take it from me ~ my fear was totally dissolved by the time I had surgery.



WE all face fear on a daily basis ~ rather it's a fear of spiders or death ~ we all deal with it in different ways. For me, fixing my eyes on eternity put everything in perspective and it's a good reminder for me today. I woke up with a brain tail headache ~ it's the 13th and a Friday today ~ not that I am superstitious, but I am not firing on all cylinders today. Note to self ~ no operating heavy machinery today!

Conquer Chiari Walk ~ 2009

So I am a little late on posting about the chiari walk that took place on September 26th ~ life has been crazy busy. The morning of 9/26 was absolutely gorgeous ~ the sun was shining and the air was crisp. I don't know the final count of how many walkers participated, but there was a good size crowd of brain tails and their friends/family. I ended up being the grand Marshall for our walk, because I was the only one who knew the route. Thank goodness the vertigo is gone or it would have been a swirly walk for everyone!

The best part of the brain tail gathering was being reunited with my brain tail friends who came from near and far. So good to see everyone and spend time catching up on our lives. We are all a hearty bunch. On the outside you might see smiles, but inside we are all struggling with either pain, financial burdens due to the aftermath of insurance bills, emotional stress ... We have our good days and other days when it's a struggle to crawl out of bed. Getting together reminds us that we are not alone in our chiari journey ~ we draw strength from one another ~ and make that choice to keep taking the next step forward in life. It's not easy, but we are all fighters ~ bound and determined to not let chiari win.

Thanks to all of you who support a chiarian in one form or another ~ every day we are one step closer to conquering chiari.

Sisterhood/Brotherhood of the Traveling Brain Tails

Next week on September 26th, I will be walking alongside other brain tails, friends and family in the second annual Conquer Chiari Walk Across America walk here in the Albany area. Participation is free but you can make a donation on the day of the walk or online. Here's the link for the online donations ~ https://www.conquerchiari.org/ccwaa09/ccwaa_donate.asp?user=LacieHeiser ~ If you would like to sponsor me, select the Walk Location: New York, Albany ~ Then you can select my name. Even if you don't have much to give, even a little can add up.

September 26th is an emotional and significant day for me. My chiari brain tail was discovered on 9/26/06 ~ three years ago. As I pause to glance over my shoulder and reflect on my three year that has brought me here today, I am overwhelmed with every emotion ~ fear, denial, disappointment, hopelessness, hope, pain, elation, frustration, sadness, joy. How did I make it through those incredibly tough times? All of the neurologist appointments, hours of phone calls with the insurance company, volumes of paper work, countless MRI and CT scans, tethered cord surgery, invasive cervical traction, brain decompression, morphine pumps, hours of physical therapy ~ all these things and more have consumed my life for the past three years. Every baby step I took was taken in faith ~ a blanket of reassurance to keep me moving forward.

As I briefly glanced at the list of walkers signed up for Albany walk ~ I recognize and know a large number of people. These amazing individuals were strangers to me and now have become instant friends all because of our brain tail bond. I am so thankful for all the friends I have made through my chiari journey ~ they have made the road a lil bit easier to tread upon.

We all walk to raise money for chiari awareness and research to one day find a cure. There IS NO CURE FOR CHIARI. Painful surgeries will help prevent some irreversible nerve damage and perhaps paralysis. But if I would dare to speak for many other brain tails ~ we all live with some degree of pain on a daily basis ~ We deal with it and keep moving forward. But wouldn't it be awesome to find the gene that goes crazy during gestation to put a stop to chiari once and for all. Life is for the living. I'm looking for the brighter days, won't you join me?

CONQUER CHIARI WALK ACROSS AMERICA

WHAT? A series of coordinated Chiari walks held at the same time across the country.

WHERE? This year, the walk will take place at more than 30 locations. Check the List of Sites to see if there is a walk near you.

WHEN? Saturday September 26th, 2009. September has been named Chiari Awareness Month in many states. In conjunction with the Walk Across America we hope to get more states to recognize September as Chiari Awareness Month.

WHY? To raise awareness of Chiari and to raise money for vital research. In 2008, the Walk Across America raised $170,000 for research, with 90% of the money going directly to fund exciting research projects at major universities and treatment centers.

The Words I Would Say

What would I say? Be strong in the Lord ~ Never give up faith ~ You are going to do great things ~ God's got his hand on you so don't live your life in fear ~ Come find peace in the Father

My heart feels the pain and the weight of the world. This blog had brought me so many brain tail friends, all in different parts of their Chiari journey. It's so easy to be completely consumed by pain and fear ~ I wanted to share this song with you ~ in hopes that it gives you hope where you haven't found any.