This is your brain...

 I have always had more luck explaining all this stuff through pictures.  Trying to tell someone I have a kinky brain stem doesn't always go over well :)   But I do...and it explains a lot. 

The image below is that of a normal brain with a fabulously perfect brain stem.   See the arrows?   They are pointing to two things.   

The first arrow on your left points to a lovely C-2 vertebrae that is exactly as it should be....straight. 

The second is pointing to this persons cerebellum. See the arrow on the right sitting in the dark grey line?   This is cerebral fluid nicely cushioning this persons cerebellum....my neuro calls this a lake...dunno why?  I think it looks like a stream...or river.   Lakes are round. 

This is your brain....(well not yours but a brain anyway). 

The image below is that of a kinky brain...this is me without skin.  Ew! 

The arrow on your left points to a very bent C-2 that is causing a "kink" in my brain stem.  It is as painful as it looks...really :)  THIS is Basilar Invagination

The arrow on your right points to my cerebellum with very little cerebral fluid cushioning my brain.  My neruo says I have no "lake" and my brain stem and cerebellum are very squished...THIS is Chiari Malformation

 This is my brain on Basilar Invagination...

Every time I look at this image I get a sinking feeling.   It's not like they could be wrong ya know?   It's very clear something is not right here....second opinions would tell me the same thing...third opinions did too.  

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Basilar invagination

Basilar invagination is a developmental anomaly of the craniovertebral junction in which the odontoid abnormally prolapses into the foramen magnum. It is often associated with other osseous anomalies of the craniovertebral junction, including atlanto-occipital assimilation, incomplete ring of C1, and hypoplasia of the basiocciput, occipital condyles, and atlas. Basilar invagination is also associated with neural axis abnormalities, including Chiari malformation, syringomyelia, syringobulbia, and hydrocephalus. Patients frequently present with neurologic symptoms and deficits and warrant surgical treatment to prevent progression...

Did you get all that?
Mayo Clinic doesn't have a fancy article for this one.   Not many sites do and most of them are written just like the one above.  I took a crash course in brain 101 courtesy of my friend Google to understand all this stuff.

  Moving on...

My first visit with Dr Melin was also something I will also probably never forget.  He came into the room and said yes...you do have Chiari but that's not what has me concerned....

Seriously?... speechless... for once. 

When I found out I had Chiari...if you would have told me I would pray to have only that I would have laughed at you.   I was terrified of this brain squishing protruding thing I had read all about.   But, I would give just about anything to only have Chiari....anything.  

He said Basilar Invagination....again... Picture me reaching into my back pocket as he said these words to me to pull out my handy dandy iPhone because I do believe it's google time again.  Then he says our entire practice see's this maybe once every 5 or 6 years....it's very rare and I don't know how to treat you.... I don't know who can treat you...

So, that's it. I don't know what is wrong with me but I know it's bad.   I don't know where to go or what to do or who can help.....IF anyone can help.

I have never honestly felt so lost and scared in my entire life...a downer a again...sorry...I always get back up though.

 Always..

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Chiari Malformation (kee-AHR-ee mal-for-MAY-shun)

Who in the world decided not to pronounce this word correctly was just wanting to screw with people... I think... 

If you haven't guessed by now these posts are really my back story....eventually I will be caught up.   But I think its important for anyone looking for answers.

So fast forward a year between being told to "just wait and see"...because honestly the year was really boring and there's not much to tell.  

Early Feb 2011 I went to the doctor for something...honestly I don't remember what for.   I mentioned my issue with seeing duplicates everywhere...know what he did?   He sent me directly to the MRI imaging center....I did not pass go and I did not collect $100. :) 

I think there are some people who live to be a doctor.  There are others that live for the money.   So, thank you Dr. Williams if you ever happen to read this for being the kind that lives for helping others....thank you! 

I got off track..

.... I will never forget the day the Dr called...never never never.  He said well we found something on your MRI....now I don't want you to worry but....

I think telling someone don't worry BUT is a lot like telling someone dont be offended BUT...just before they piss you off.  

I listened to the first of many many conversations that go like this.....so and so consulted with so and so...and they consulted with them....and so on... 

"the radiologist consulted with a neurosurgeon and neuro radiologist and they have confirmed Chiari....." 

WHAT!?   What is that?   How do you spell it?? Because I had a pen in hand ready to take down the name of this condition that I was about to google... He had to go look it up in a medical dictionary because he didn't know how to spell it either.   Of course he started looking through the K's to find it...  

So I google.....keari cause that is what it sounds like....ta da!  Apparently everyone else spells it wrong too because I was faced with About 2,010,000 results in (0.32 seconds)...What in the world was this...and O>>>M>>>G!...what came back was nothing less than scary as hell.   Anything that  mentions brain tissue and protruding in the same sentance is enough to scare anyone...whoever you are.  

So what is it?   Per the Mayo Clinic Chiari is defined as:  

Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses. 

The adult form, called Chiari malformation type I, develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood. The most common pediatric form, called Chiari malformation type II, is present at birth (congenital). 

 So...where to go from here?  That appears to still be a question but I have been to an awful lot of here's and there's and still don't know where I'm going. 

My next stop...Neurosurgeon in Wilmington and Basilar Invagination... I'll get to that next :)

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Strange signs that something is afoot...

In my previous post I mentioned my quick google skillz after being dignosed with both Chiari and Basilar Invagination but I want to step back in time a bit so you can understand what got me there...I wonder if the journey of others is similar?

When I was 12 it began with excruciating headaches and the doctor said... migraines! Take two of these and call me in the morning...  (thanks doc!)  Even at 12 I knew pain being completely located in the back of my head did not fit a migraine. Popping noises like going way to deep in a swimming pool were constants during these headaches.  Turns out those popping noises were actually spinal fluid filling up in my brain squishing it to a point it squeezed down my spinal cord...(I'll go into more of that later though)  Mom took me to doctor number two who had all the answers.  Cluster headaches! Take two of these and call me in the morning..... (thanks doc!)

Between 12 and 19 my mother must have thought the only thing I was suffering from was severe  hypochondria and an allergy to school.

All in all no symptom seemed to be related....tachycardia (really fast heart rate),  headaches, an incredibly lazy digestive system, cold hands and feet, double vision, neck pain.....just to name a few.   Who woulda thunk they were all coming from one condition?   Never in a million years would I have guessed it.  

In 2010 I started having double vision which was a totally new symptom.   I saw three doctors and none of them could figure out why I was seeing everything twice....an ophthalmologist, neuro ophthalmologist, and a Dr. assistant.  I can not tell you how frustrating it is to have everyone look at you and say nothing is wrong when there is clearly something wrong!  Everyday I would drive to pick up my daughter from daycare and had to keep my hand over one eye so I didn't see two of everything while I was driving.  

Oh, oh! AND I almost forgot....have you ever been to the eye doctor and they have you put on those dorky 3d glasses and tell you to touch the 3d pictures?  Well, all my life I have seen these pictures and assumed I would this time too....they were gone!  I kept looking back thinking this has got to be a mistake because I always see these pictures.  Not anymore.... Even one more reason to know there was something very wrong with me.... The doctors said wait it out maybe my brain will somehow figure out how to see everything right again?.....it didn't sound logical to me either!

But I did wait almost a year.... it was a very long year!

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Number two!  I'm on a roll!

So, my journey for those who are interested....

When you are diagnosed with something so rare it seems like you are all alone....it did for me at least! If you are anything like me within 10 minutes of hearing this crazy word Chiari by my doctor...who couldn't spell it! :) You go straight to Google...you do not pass go and you do not collect $100.   While I did find quite a bit of stuff on Chiari,  Basilar Invagination was a whole different story.

I can only describe that search as...crickets! I did find doctors studies (which I don't understand) and Wiki sites that give you a very narrow view of the conditions and what patients go though..   Every once in awhile I came across a post by some random person from years ago that asked if someone had heard of these conditions and then...crickets!  I saw a comic the other day that reminded me of this search.   I absolutely have to share with you.   If you have ever been on this same frustrating search you just may laugh....I did.

So I hope this helps someone....and if nothing else I have a place where I can remember this long road to where ever it may lead me.  Maybe one day I will look back and laugh...maybe not.

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So I guess introductions are in order...

My name is Courtney.  I live in Wilmington NC, which is the most wonderful place in the world if you ask me!  I am married with children :)  I live with a wonderful husband and my two beautiful daughters.  While I consider myself to be technically very smart this is my first go at blogging....so bear with me while I get the hang of this!

So now you know who I am, I'll move on to my incredibly large brain...and the reason for this blog.

I'm not exactly sure if I have an incredibly large brain or an incredibly small skull...either way something just doesn't quite fit the way it should.   I have Chiari Malformation and Basilar Invagination with a side order of Platybasia.   If you would have told me I would be able to spell any of these a year ago without spell check (which doesn't know what they are anyway) I would have laughed.   But, I can not only spell them I can tell you in depth what each of them are and name all the brain parts that are affected by these.  I can also tell you how much your life changes when someone says you have these.   My life changed dramatically even though I have had these since birth.   I can't honestly tell you it changed for the better...and I would probably pay a large sum of money if I could go back and never know.   But I can't.   It's kind of a downer and I apologize....just keeping it real :)

So, Feb 10th 2011 my life officially changed to that of a girl with some weird headaches and a bunch of little symptoms but otherwise healthy 34 year old to a girl with major medical conditions that no one (here) knew anything about.  I guess I'll start my journey in my next posts just so I can get this one posted...

....because quite honestly I am impatient and want to see what this whole blog thing will look like once I hit this publish button.

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