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.

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

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 .

Christmas Is All in the Heart

Less than two weeks until Christmas and my brain is buzzing with anxiety ~ all those lists compiling in my head and certainly not enough post it notes to contain them all. I have done well with putting on my cyber hat and have done most of my shopping on-line this year, but there's always an item or two that requires actual shopping!

Being a brain surgery survivor, I feel grateful for how much better I feel this Christmas than last. Hey, I might even be able to store memories this year, too. Last year's Christmas is a blur ~ honestly, I can't remember on thing from last year. Maybe it's for the best ~ a defense mechanism to work through the pain of recovery.

If you are reading this and you have a brain tail, you just might know what I am talking about when I share with you that my brain short circuits, still, from time to time when I can't organize my thoughts or when I get a big dose of sensory overload. The holiday shopping frenzies = SENSORY OVERLOAD. ~sigh ~ 10 ~ 9 ~ 8 ~ 7 ~ 6 ~ 5 ~ 4 ~ 3 ~ 2 ~ 1 ~ This is me taking a couple of seconds to breathe ~ collect my thoughts and move forward.

The shopping will get time ~ I just need to focus on one thing at a time ~ and remember to breathe from time to time ~ oi! More importantly ~ Christmas isn't about the presents ~ Christmas is all in the heart...

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.

PAIN Is Weakness Leaving the Body

Pain is Weakness Leaving Your Body - Nietzsche

Brain surgery isn't 100% successful ~ I knew the odds going into my decompression. Honestly, I didn't expect a 100% recovery.  After all, I still have cranial settling ~ I can't remember the exact weight it took to lift my head off my spine before I felt relief during my invasive cervical traction, but it was over 20lbs.  Coming to terms with the fact that my brain tail will always be with me is a tough fact to digest.

I'm not sharing this with you in any way to get the sympathy vote ~ just sharing what's on my heart. Yesterday I woke up feeling like I had been mowed over by a dump truck ~ an all familiar feeling that I hadn't felt really since my surgery. As I was waiting for the effects of my first cup of coffee to take effect I made a mental note ~ warning alarms going off in my mine ~ this just might be one of those days when a chiari headache totally hijacks my body. So later in the day when I could feel that fullness feeling at the base of my head I knew it would only be a matter of hours before I had to lie down in a dark/quiet room. 

Believe me, I fought the headache with every ounce of energy. I sufficiently hydrated myself, tried not to bend over at all, no cardio workouts ~ I mostly spent most of the day doing a thousand loads of the girl's camp laundry. Then, around suppertime, in the middle of preparing dinner, I suddenly had to stop what I was doing and lay down on the couch. The nausea had set in and the pounding in my head reduced me to tears. An hour after I had taken my high powered migraine meds the headache was still going strong, so I decided to throw in the towel and go to be for this night.  

I am praying that these types of episodes will be few and far between.  More than anything, it's just so discouraging to know that brain surgery hasn't made me exempt to chiari headaches. *sigh* .  With that said ~ I truck load of weakness left my body yesterday ~ looking forward to a stronger me in the upcoming days. There is no cure for chiari yet ~ keeping the faith for a cure/procedure to rid all of us chiarians from headaches for life! 

You're Not Shaken

It's so easy to get through to the other side of the valley of the shadow of death 

and never look back.  I would love to just completely  erase 2008 from my mind, but then again, that was a HUGE part of my life journey. With each passing day I am in awe at my recovery ~ serious miracles have settled upon me. Look how far I have come in such a short time. 

As challenging as it was to endure brain surgery, I want to remember how lost, alone, afraid I felt at the time so I can empathize with other brain tails going through the same journey. Chiari will continue to rock my world ~ I will take all of it ~ the good and the bad. These lyrics really spoke to me when I heard them the first time ~ touched a memory from last year. The indescribable instinct of holding on and lifting my eyes towards the Lord, even when I didn't understand why me ~ brain surgery ~ how can this possibly be happening. To look back and see that strength that comes from trusting the Lord ~ as weak as I was in body ~ still not shaken. I hope these lyrics bring strength to some of you going through a similar journey. Hang in there! 

Phil Stacey - You're Not Shaken

From the album Into The Light

I am sinking in a river that is raging 

I am drowning, will I ever rise to breathe again 

I want to know why I just want to understand 

Will I ever know why 

How could this be from Your hand 

When every little thing that I have dreamed would be 

Just slips away like water through my hand 

And when it seems the walls of my belief are crashing down 

Like they're all made of sand 

I won't let go of You now, because I know You're not shaken 

I'm trembling in the darkness of my own fear 

All the questions with no answers still grip me while 

I'm here And I may never know why I may not understand 

But I will lift up my eyes And trust this is Your plan 

When I am in the valley of the shadow of death 

You're not shaken, You're not shaken 

You're right here beside me and 

You have never left 

You're not shaken, You're not shaken

How Sweet It Is!

I have been remiss in blogging about my post-op TCI followup appointment I had back in May. Here's my latest Brain Tail photo ~ wow ~ they really did do something to my brain during my 7+ hour brain surgery! You can compare this one with the one on the side bar ~ notice all the extra room in there!

With that said, here's what the good docs at TCI had to say with the progress I have made since my decompression. First off, I am healing quite well and although not up to full strength yet, I am getting there faster than most patients. Also, most of my symptoms are completely gone except for the low barometric pressure headaches, which I am learning to deal with.

Now for the not so good news ~ I guess when you are facing brain surgery, the docs only focus on the task at hand instead of overwhelming you with your bleak lifetime outcome. Sigh ~ So, now that brain surgery is out of the way, I was told that I have degenerative disk disease and stenosis. Translation ~ I will probably be dealing with chronic pain in my body for the rest of my life. Sounds pretty bleak, but I am fighting this with every ounce of strength in my body.

I guess EDS is showing how destructive she can be ~ Honestly, I am so thankful to be alive, to have survived brain surgery, that everything else that may be just around the corner is cake. So I am focusing on increasing my bone density, working out and getting stronger. The bigger picture of living with CHIARI is coming into focus ~ it's a lifetime battle, but thank goodness I am not at risk of having a stroke or paralysis any more. All you brain tails out there ~ the sisterhood/brotherhood of the traveling brain tails make traveling on this crazy journey so much sweeter. 

Keeping the Faith

I am reading Dan Brown's Angels and Demons and I just came across a brilliantly written paragraph about terror. In light of the TCI ongoing investigation this really hit home and explains the ripple effect of terror.

"'Terrorism', the professor had lectured, 'has a singular goal. What is it?' ...'To cause terror?'
'Concisely put. Quite simply, the goal of terrorism is to create terror and fear. Fear undermines faith in the establishment. It weakens the enemy from within...causing unrest in the masses. Write this down. Terrorism is not an expression of rage. Terrorism is a political weapon. Remove a government's facade of infallibility, and you remove it's people's faith.' Loss of faith..."

Life continues to teach me many hard lessons ~ some numerous times ~ life is hard ~ the good guys don't always win ~ nothing is fair ~ pain comes from living a full life ~ there is good and evil in all situations. I thought that maybe after surviving brain surgery that I would be exempt from anymore hardships ~ clearly I had a delusional moment ~ but it's OK ~ I still have a lot of living to do and a lot to learn.

This post might seem a little cryptic, but I am sorting out something in my head. I have really had to sit and simmer for a while ~ remove myself from an emotional tornado ~ the mama bear in me wants to spring forth and play the protector. Faith has been completely shattered for many and getting that trust back is a slow and long process. I am so thankful that I am where I am in my chiari journey so that I have a clarity that comes from stepping out in faith and entrusting my life to brilliant neurosurgeons.

~Sigh~ How do I find the strength to continue to do my part to infuse the chiari community with a renewed hope and faith in surgeons who heal? One breath at a time ~ one baby step at a time. Living with Chiari is a moment by moment struggle ~ a lifelong battle ~ but there is so much more to life than living and dying. As long as I am breathing I will continue to encourage those of you who need someone to cheer you along in your journey ~ you are never alone! Finding joy and a peace that passes all understanding ~

If You Want Me To - Ginny Owens

Medium

Medium is one of my favorite shows ~ last night's season finale really got my attention when the episode focused on Allison's deteriorating mental/physical health. **SPOILER ALERT** Allison collapsed at the office one day and when they ran some tests on her they found a rapidly growing tumor on her brain stem. Ooo MRI's of Allison's brain ~ I perked right up straining to see if she has a brain tail. Do any other loyal viewers out there remember a Medium episode early on in the series where it was found that Allison and all three of her girls share the same type of brain malformation? It's been driving me nuts, because I can't recall what they found but my hunch is it has something to do with chiari.

Anyway ~ the doctor was discussing surgical options with Allison and her prognosis with the newly found tumor in her brain. They must operate immediately as the tumor was growing fast and if they didn't operate and take it out it would cause her brain to herniate ~ GASP! The doctor went on to explain the urgency of the need for surgery as herniation of the brain can cause paralysis even death! GASP again ~ I wish I had found her doc when I was diagnosed with my brain tail. It seems that the local docs don't think a brain herniation of 17mm is anything that serious!

Here's a question for you brain tails out there ~ has having a brain tail made you more extra sensitive to things that are unseen ~ thoughts that are not spoken? I completely identify with Allison from Medium ~ not to that degree, but it can really make me feel like I am not from this planet sometimes. Maybe it's the hernation or the extra room now in the back of my head that makes me more sensitive ~ thoughts ~ anyone?

Brain Tail Whisperer

I was so sad and sick to my stomach today as the scathing accusations ripped the headlines. I won't dignify the press here, you can find the articles on the Internet ~ but I feel as a loyal patient of Dr. B and Dr. M, I must say something.

The facts are that my incredible neurosurgeons (Brain Tail Whisperers) were recently suspended for two weeks due to a scheduling mishap with the hospital. I am still hoping that the real story will eventually come out, but my brain tail tells me that there was a family emergency and the powers that be didn't get the message to cancel a surgery. Let's face it ~ communication breakdowns happen ~ it's part of life. Recently there was a HUGE miscommunication that resulted in panic in NYC when Air Force One flew over Manhattan for a photo op and forgot to tell the Mayor of NY! It's unfortunate that this happened, but seriously, I have been a patient at North Shore Hospital three times and it's a zoo over there. My docs perform two surgeries a day ~ five days a week. I know they are way over worked and must be completely exhausted! The bright side of this is that they got a well deserved vacation!

I seriously doubt that any of the reporters or the lawyer who is filing lawsuits has ever met Dr. B in person. My Chiari journey has involved 4 local neurosurgeons. Two of which I adore and they referred me to TCI as I was a complicated case and way out of their league. The other two told me to my face that the good docs at TCI were making diagnosis up! When it comes down to it, I have leaned on faith and what my heart has told me where I should be treated.

When I had my initial consult at TCI in May of 2007 a surgery plan was proposed that involved a spinal detethering followed by a posterior fossa decompression and fusion. I was told by Dr. B that the decompression surgery was brutal and would be a long and painful recovery. He said that when surgery looked better than living with my symptoms, then I would know when to have the procedure done.

On 2/1/08 I had my spinal detethering surgery ~ remember this was only diagnosed by TCI. They had explained that my spinal cord was tethered and responsible for causing my chiari malformation. The constant downward pulling of my brainstem had caused all kinds of horrible side effects. I was willing to believe in the unseen and put my faith in my surgeons. When I came to after my detethering Dr. M stopped by the recovery room ~ held my hand ~ looked me in the eye and told me that I was incredibly tethered. He wanted me to cancel my brain surgery that was scheduled for the next month as he was certain that the detethering would reduce my brain herniation.

After the detethering, my symptoms were greatly improved, no more gait problems, my constant nausea was gone ~ but truth be known, my brain tail measured at 17mm ~ it was going to take an act of God to make me feel up to 100% again. I scheduled my decompression for 12/3/08 as it seemed evident that my brain definitely needed more room. I wasn't disappointed that the detethering didn't 'fix' me ~ I understood the complexity of my case. I couldn't continue to live with the constant swirling vertigo, brain fog, trouble swallowing, trouble breathing. I know that my docs at TCI are not super heroes ~ although they come pretty close in my book. The day before my decompression I found out that between Feb and Dec 2008 my brain tail had shrunk from 17mm to 10mm due to my detethering! The surgery absolutely improved my condition.

I know I have rambled on, but I am almost finished ~ So I had my brain tail decompression done on 12/3/08 and I am so thankful that I was decompressed. Sure, I have Chiari pressure headaches on a rainy day, but compared to how I felt prior to surgery I would say I am close to 95% now! TCI takes patients who have no where to turn ~ patients turned away from other surgeons who claim they need to be locked in a padded room as all their symptoms can't possibly be related to Chiari! Their bedside manner is incredible ~ how many neurosurgeons do you know that will hold your hand, look you in the eye and put your fears to rest?

I could go on for another hour, but the point I am trying to make is ~ please don't lose faith in TCI. Please don't be quick to judge before all the facts are in. These are good, hard working, caring surgeons who have saved thousands of people! They need our support now more than ever. This too will pass ~ take the higher road with me ~ I still believe.

What's Your Status?

So how long can I use the 'brain surgery' excuse for not blogging nearly enough? I am way overdue for a status update, right? Well, for starters, the Wii has officially kidnapped my children. They love the Wii Fit games and spend pretty much all waking hours learning new skills. We have all had fun playing the games, although, as you can imagine, I am banned from playing most of them for a great fear of disturbing the healing zipperhead!

Physically, I feel like my strength is returning with the passing of each day. Any pain in my head/neck can be taken care of with some Advil and/or a muscle relaxant if I am having a really tough day. But seriously, I just had brain surgery, shouldn't I be in excruciating pain? Nope ~ can't explain it other than prayers have been answered and I have a wicked high tolerance to pain ~ what a blessing! I am hoping to start driving this week, even if it's a trip around the block. I know that mentally I am coming around because I have started compiling lists of things I want and need to do already.

Many people have asked me if I can tell if my symptoms from Chiari are gone now and my answers are still a little on the vague side. It's hard to tell, but I can say that the vertigo seems to be gone and the crushing Chiari headaches. My short term memory seems to be returning, too. I think I am still existing in the decompression honeymoon phase. How do you go back to 'normal' after brain surgery? What is normal anyway? My main goal going into brain surgery was to survive ~ keep breathing ~ choose life. So, since I seem to have accomplished the basics, now what?

Blessing In Diguise

OK, finally I was able to get upload images from my 3D CT scan of my head. How surreal is this to get this up close and personal?!!! My intention in publishing this beautiful pic of my head wasn't to freak any of you out, but from a medical miracle perspective.

The C1 vertebrae is the tiny one at the base of my skull. My surgery pretty much did away with that vertebrae, leaving the C2 to hold my head up on my shoulders. Remember how I mentioned that my C2 was freaky big? Well look at it ~ it's bigger than bot the C3 and C4 put together! Talk about a blessing in disguise. Clearly this is a birth defect that I had never known about or seen until now. In looking at the big picture, the fact that my C2 is mis-shapened and clearly overdeveloped, I have a good chance of avoiding the fusion surgery later.

Then, There Was Before Me An Open Door

Hi, my name is Lacie and I am no longer an addict. It's day two of no morphine and even though I still have a wee bit of the shakes my head feels so much more clear. I have been taking Advil for the pain as needed and it seems to be working. It's only been 9 days since my brain lift and I am already bored to tears ~ seriously!

We had a wicked ice storm last night and I was awoken from sleep every hour with the crashing sound of falling limbs. Thank goodness we didn't lose our power. The sleet has changed over to snow this morning and I have to say it's beginning to work on my non-existent Christmas spirit already. I apologize in advance for a scattered blog, but the brain isn't firing on all cylinders just yet. So, apparently I blogged at least once while I was in the hospital. I remember writing, but have no idea what I said. The funny thing was the pulse-ox meter that was on my finger was beeping like crazy the whole time I was tying, because I was supposed to be still. I am still trying to unwind all the thoughts in my brain about all the experiences I went through over the past 2 weeks.

One feeling that was predominant through everything was a sense of peace and calm ~ completely. Prayers were definitely heard and answered. I knew I was being cared by the best of the best chiari docs and had no fear. Even on the worst days I knew that if I just kept breathing I would certainly get through it all. ~sigh ~ So, I can't officially wash my hair until 2 weeks post-op ~ next Wednesday, 12/17 ~ last night John and Mom managed to throw some plastic bags over my incision and were able to wash what hair i have left. The pony tail hair doo is beginning to get very fashionable around here. OK ~ need to lay down for a while ~ more later ~ thanks so much for all the comments and messages. Who knew I had such a big fan club. Love you all ~ send me some ideas to quench this boredom, please ~

Happiness Is...

I am learning to find joy in the little things ~ anything to shed light on this narrow dark path. Reconnecting with friends on Facebook has brought me more joy that you can possibly imagine. So ~ what do you say to a friend when you are reconnecting after 20+ years? How do you sum up all those years since high school, since camp, since college?

It's a fine line ~ the boundaries between the safe answers and the raw, ugly truth are fuzzy. I am a straight shooter, maybe it's the Texas blood that pulsates through my veins. It's incredibly hard for me to BS my way through a conversation without mentioning the only thing on my mind, "Hey ~ did I tell you that I am having brain surgery in a couple of weeks?" There is no smooth transition. I find myself not sharing with some, because I know that they won't know what to say in return ~ what do you say? But seriously, it's still me ~ just because my brain is sliding out of my head doesn't define me completely. Although, it has put a damper on my bubbly personality.

Therein is the beauty of friendship ~ those who really know me offer prayers, support, a shoulder to lean on. Friends share life's joys, disappointments, sorrows ~ that's the glue that binds you. Life is messy ~ TRUE STORY ~ no matter what you are going through, no matter how dark and scary, know that if we are friends I will be there for you, no matter what might come strolling down your path. Don't be afraid to share your life, let someone join you in your journey. It makes life more bearable to have a friend walking by your side.

Chiari Anatomy 101

I have known about Chiari only since September 2006 ~ yet it seems like a lifetime. I try to stay on top of reading other chiarian blogs and doing research on the internet ~ I came across this neat picture that visually shows you what a brain tail looks like from a bone/brain perspective.
What you are looking at is the back of the head. The cerebellum is supposed to be above the foramen magnum, but a person with Chiari, like myself, has brain matter herniated down through the foragmen magnum into the spinal column. This picture shows what the head looks like after Posterior fossa decompression surgery. The surgical procedure removes bone at the back of the skull and spine so that the brain tail has more room to hang out. Well that's my attempt at a non-medical explanation anyay. I am still hoping there's room in there to request for a memory upgrade during my surgery. Maybe they could upload a kung fu program ~

New Discoveries Awaken the Muse

There's nothing like the shock and awe factor to awaken the Muse from her slumber. ~Sigh~ Thanks for all the happy birthday wishes ~ they really made my day. The picture above was the only thing I could think about today. The shock has worn off ~ WARNING ~ if you put your daughter into an MRI machine to capture pictures of her brain, prepare yourself for what might be revealed.

That's Skyler's brain ~ recognize the all too familiar brain tail in there? Hers is minimal ~ 5-6mm herniation. Actually, we haven't even received the official phone call from the doctor yet. I was finally able to open the MRI disk that the hospital gave to me. I immediately e-mailed my pediatrician to see if she had heard anything from the neurosurgeon yet and she confirmed my suspicions.

More later ~ I just wanted to let you all know what's going on on my lil speck on this planet. I keep reminding myself that God doesn't give us more than we can handle. More will be revealed. I just thank God that I know what Chiari is and will make it my mission in life to prevent Skyler from having any kind of brain surgery.

I Can't Brain Today

My brain tail has totally stolen my muse again and replaced it with a swirling, vertigo brain. This slogan ~ I can't brain today, I have the dumb ~ is perfect since I walk around daily in a thick brain fog ~ but the sad thing is, I often scramble the words and it comes out ~ I can't dumb today I have the brain!

I am counting down the days til I go in for surgery! Trying to keep myself busy with life ~ taking it one day at a time and trying to remember what day it is ~ what planet I am on. The girls have their cheerleading competition this weekend ~ a fun filled day of loud cheerleaders and blaring music ~ ooo ooo ~ can't wait. Seriously, I do enjoy watching them perform but could really do without all the activity surrounding the event.

Dark Stranger

Pain is Weakness Leaving Your Body - Nietzsche

PAIN has swallowed me like the whale that swallowed Jonah . This summer we have been pounded by low pressure fronts and pop up thunderstorms which add to the whole vertigo~pain in the neck/head factor. There have been no 'good days' for a while now. Thank goodness my surgery is on the horizon, although December feels so far away, I am hoping it will get here quickly. So if pain is weakness leaving the body then I should be feeling a whole lot stronger any time now, right?

There isn't a soul on the planet who isn't feeling some type of pain ~ emotional, physical or spiritual. We all deal with pain differently, but the question is, do we let it define us? For me, I still haven't figured out if learning, from a very young age, to grin and bear it was such a good thing. I think there has to be some kind of healthy balance of putting up with the pain and letting it consume you. For me, feeling pain reminds me that I am alive, my heart is still beating. This doesn't mean that I enjoy it, but a gentle reminder that I am human.

I watch X-Files reruns almost on a daily basis, shocker, I know! One episode from Season Four really stayed with me ~ I copied some quotes from the episode below:

Scully: In med school I learned that cancer arrives in the body unannounced. A dark stranger that takes up residence. Turning its new home against itself, this is the evil of cancer, that it starts as an invader but soon becomes one with the invaded, Forcing you to destroy it, but only at the risk of destroying yourself. It is sciences demon possession and my treatment sciences attempt at exorcism. Mulder I hope that in these terms you might know it and know me. And except this stranger so many recognise but so many cannot completely cast out and if the darkness should have swallowed me as you read this. You must never think there was the possibility of some secret intervention, something you might have done and though we have travelled far together this last distance must necessarily be travelled alone.


Scully: (Writing in her journal) I have not written to you in the past twenty four hours because the treatment has weakened my body. Mulder it’s difficult to explain to you the fear of facing an enemy which I can neither conquer nor escape.

In away, I identify with Scully's 'Dark Stranger'. Certainly an over zealous brain tail and cancer are not even in the same galaxy, but nevertheless, my brain tail is a part of me. In an attempt to make room for brain tail my body will feel great pain. With Chiari ~ there is no conquering or escape ~ not yet. I had a dream the other night that I shot a syringe of salt into my brain tail and just like that, it shriveled right up like a snail. Problem solved ~ I wish the cure for chiari were that simple.