Never mind....

So, in my last post I was feeling so incredibly yucky I said....I actually could see myself going through with fusion.

Never mind!

For the past month I have felt like Courtney again....(if you are reading please knock on wood).

As for that whole fusion thing....I cannot think of facing it!!!...once again. So, here lies the million dollar question....what if...

What if I feel totally awful and end up going through that whole nightmarish surgery and feeling good was just around the corner?? I dunno!

My uniqueness makes it utterly impossible to predict anything that will happen and...

.....Uniqueness is overrated ...

I have no idea what changed. I never do. I have really crappy months and really happy months. No in between months...OR I'm not exactly sure what an in between month would be if I were remotely normal....but I am thinking in between would suck for most.

I think...

My rule number one is the reason I feel okay. If you're wondering what I'm talking about go (HERE). Posture..... It's the only thing I can think of that I have really focused on. Who knows really..... But I feel pretty great and I'll take it!!

I guess I should blog more often and actually document the things I do that work and things that don't as they happen.... However procrastination wins most days and I forget.

Anyway.... That's all I have to say. :) I feel great. Life rocks. I hope it lasts.

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Bowling balls and wet noodles...

I'm not sure what's going on lately but I feel like crap!!

It's not headaches exactly that's getting me down though....headaches I can totally deal with...I have some experience in that department.

 

I think my head is taking on water because my head is getting heavier! (on and off) :) I swear my normally normal weighted head sometimes turns into a 50 pound bowling ball. My poor neck feels like it is just struggling to hold the dang thing up. (noodle....get it? ;)

This is actually pretty terrifying to tell the truth... For the first time since all this began I can actually see myself willing to go through with the cranial fusion. This is coming from the same girl who swore she would die before suffering that fate. Now... I see living this way a worse fate.

My husband pointed this out.... he said a year ago you wouldn't have considered surgery and now you discuss it like it's going to happen...you are planning for it. I didn't see it until he said something. I can not even put into words my thoughts when I really thought about this... it was powerful. I can't think of a better word to describe it. Not bad, not good just a lot to swallow in a span of 1 minute. I guess that's a whole different blog post...  

My how times change..
Luckily I don't always feel this way. So I am not headed to the O.R. just yet!! Two days ago I had dealt with this 50lb bowling ball head for 2 or 3 days straight. I was at the point of sheer panic and was riding home from eating out with my family and turned my head to look out the window and POP!! My neck popped and my head went back to a normal weight......? ....I dunno!?

Since then my head has been its normally normal weight (there went my new smarts....or water) but my neck has felt like it is still exhausted holding it up....but my head is not heavy. So no headache....no bowling ball but a tired sore neck. This is actually okay except I am terrified the whole heavy head thing will come back with a turn of my head. It's not the first time it's happened but its defiantly the most memorable.

If I were not something straight out of a freak show I may be able to ask a doctor what just happened to me but since no one really knows much of anything about what I have I'll just keep guessing...

Oh!... I did have one other thing... I was googling "heavy head"... Imagine!...me googling something :))

....there were only About 206,000,000 results (0.27 seconds)...I didn't read them all...

Anyway I found something interesting... an article that hammers home posture...I have preached it before...this is good stuff!...or thought provoking anyway...

This came from http://alisonimiller.com/your-head-is-heavier-than-a-bowling-ball/

Your Head is Heavier Than a Bowling Ball

It’s true. For every inch that the head moves forward in posture, it increases the weight of the head on the neck by 10 pounds! An average bowling ball weighs 16lbs or less. If you consider how heavy a bowling ball is imagine how heavy your head is to hold when it juts forward.

Poor neck posture leads to head, neck, and shoulder pain. Daily activities such as working on the computer, driving, and sleeping (with bad posture) all promote a forward head posture.

Give your head, neck, and shoulders a break this week. Practice awareness, stretch, and get your head back over your shoulders, not in front of them!

So..... Remember my rule #1.

Posture.

Sit up straight. Stop slouching. Chin up. Shoulders back!!...

Forgetting this rule is probably why my neck hurts so dang bad! Ta! TA! for today! :))

One more teeny weeny little thing... one of my friends today said she actually reads (and likes reading :) my blog posts....I wasn't sure if anyone did!....it was a great feeling and I am thankful she told me....thank YOU (you know who you are) :))

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My Story and Blog Meat..

I always wonder if a new visitor comes to this site and thinks...what the hell is she talking about???...because you see the new stuff and really have no idea what the backstory is.

40% of all my visitors were new this past month...so is that 40% thinking I have no idea why she doesn't like people asking her how she is feeling... (my last post...) OR if some visitors already live with these conditions and kinda already know where I'm coming from. 

 I dunno!!

So.... I am adding a link to go back to the beginning ... Just in case someone really wants to know but is too lazy to keep clicking the 'see older posts' link until they got there... Ya never know! 

 I am that lazy! ... I can't be the only one.

My story starts here (click here)

So that's where it starts but I also wanted to add links to the informational posts I have made.   Believe it or not the blog has not been me just rambling on and on about nothing.... It just is most of the time :-p

So here are links to the meat of my blog...there won't be many I am afraid!


What is Basilar invagination?   - its not just a thorn in my side!

What is Chiari Malformation?  - its not just a pain in the neck...theres way more to it :)

BI and CM connection to SVT  - all these acronyms!!

External Sites

American Syringomyelia and Chiari Alliance Project - external site with lots of good info

Chiari Connection International - another great website for Chiarians


There are lots more Chiari sites that I will add later.  

There is even a great community of people with Chiari and a couple even have Basilar Invagination...which it awesome to me! Not that they have it, but I am not completely alone. Lord knows I feel like it sometimes...  It's called the Chiari Online Support Group.... (here is the link to that site)  

Now I know you are thinking....wait Courtney!!  Those are great websites about Chiari!  But what about Basilar Invagination??!!??  

I know that's what you are thinking!!  (insert sarcasum here) :))  

well....

There are none!! Ugh!  Zip! Zilch! Nada!  Or at least none that I can find that are not hospital advertisements or doctor studies.  If anyone knows of one please let me know! I'd love to have it!!

So that's it!...

..the beginning of my story and my blog meat... I will add more blog meat soon and throw in random thonghts about things I think about more often than not...  :)   Soon!  I will try my hardest not to wait 2 months between posts.  But honestly you do not want to know what I am thinking most of the time...I am pretty lame and my thoughts are reletivly boring. 

Until next time!! (thanks for making it all the way to the end!)

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Living through it....

It's been awhile since I updated but honestly there hasn't been much to tell.

In a nutshell....Life is good.  Headaches suck.

These aren't just headaches these are mini nightmares and feel like my brain is going to explode out of the back of my head....graphic..yes.  Sorry :)

Everyday I make little changes to make living with Basilar Invagination and Chiari easier. I am so extremely hardheaded (no pun intended) and refuse to have surgery so.... I have had to adapt.

I figured I would share how exactly I have adapted...how I am able to live through this..Maybe it will help someone else dealing with the same thing. I betcha these would work for anyone with a headache brain issues or not.  

So here goes....

#1. Posture.
Sit up straight.  Stop slouching.  Chin up. Shoulders back!!...

Moms across the globe chant this to their kids every single day.   It's not easy to remember even if the punishment for not sitting up straight is a mini nightmarish headache.

My spine shoves my brain stem into my cerebellum ...when I don't sit up straight it shoves it even harder.  So do I always sit up straight?

Nope!  :)

Even as an adult I forget this one simple rule.   When I feel bad its even harder to sit up straight and when your head feels like it weighs 20 pounds its hard to keep the darn thing up sometimes!  But I try and when I do it helps immensely! 

My husband has taken over the role of mom reminding me to sit up straight.... I am grateful for it too.

I am guilty of every last one of these....daily!

#2. Water.

I read somewhere that 80% of all headaches are caused by dehydration!  That's crazy and preventable!  Not drinking enough will bring on a chairi headache just as fast as not sitting up straight.

Problem is... 

I don't remember to drink sometimes until it's too late.  I guzzle gatoraid until my headache starts to ease up.  Sometimes it works.   



#3. Cold packs.  

As I sit here typing I have a frozen cold pack balancing on my head. :)  Once I have forgot to sit straight and drink water and have a raging headache a cold pack can be the one thing that makes it bearable.   They don't typically make them go away but defiantly make my bad days easier.  

Cold...get it? ... its a stretch. But I love these :)

 
#4.  Tension tonic.  (or peppermint oil)

Tension tonic web site

We have a store here that sells this stuff that I think is a miracle!  I am like a walking billboard for them and was not paid to say any of this!...if someone has a headache I'm reaching in my purse to get my handy dandy roll on.  I even gave it out as Christmas presents.  ;-p 

It's peppermint oil and some other stuff...it rocks.   Dr. Oz mentioned peppermint oil on his show too...it does help if you can catch a headache early.  

 
#5.  Just say no... 

I steer as far from pain killers as possible and can't think of the last time I took something stronger than Advil for pain.  It always makes me feel crappier (<--is that a word?)  when it's wearing off and the headache is always still there...just dulled.   I noticed when I did stop taking pain meds my headaches significantly decreased....I think many of them were rebound headaches and not actual Chiari or BI headaches.  


That's it really...  I just deal with it when all else fails.   I have an amazingly supportive family that knows when my headaches are really bad and they normally send me straight to my room to go to bed...

Reading blogs of others that are going through this I am incredibly blessed to not be as bad off as most.  Considering my MRI's look much much worse than most I am even more blessed.  

When you are faced with something awful you really have no choice but to face it.   So I do.   Most of the time life is good :) 

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How are you feeling?....

I keep going back and reading this post wondering what to add to make it less sad but I can't!  So before you read on.... know this....

Here's my disclaimer....

While these awful conditions are a huge part of my life...they are not my life.  There are times though that I wish I could scream out how much this all sucks sometimes.   Being that I was raised a lady...I don't.   But that doesn't mean I don't think it and doesn't mean I can't put it in my blog because my blog is to talk about these conditions...and it's not always happy.    

 

DEmotivators...I love these. 

How are you feeling?....

I dread this question.  D R E A D it!

Every time someone asks me this there is an inner monolog in my head saying

.....do I tell the truth?
I feel like crap today...my head feels like a 20 pound bowling ball and I would give anything to just go rest it on something so I don't have to hold the darn thing up anymore.

OR

.....do I lie?
 I feel great! :) ........It's easier and honestly are they really interested in knowing how utterly crappy I feel....? probably not.  Does it make everyone happier and less stressed when I say I feel fine? 

Absolutely....

Am I a good lair?  Nope... I don't think I fool anyone when I lie...but sometimes I do anyway. 

Do I still want people to ask?

yes.  

But only if you are truly interested because  I just may decide to tell the truth...and there are days that I want nothing more than to tell someone how I feel about all this....it's not something many would want to hear and it's something even fewer would be able to understand.  

But it would be awfully therapeutic to scream how much Chiari and Basilar invagination sucks just once....

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Not really Chiari related but....

I guess this could somehow relate to Chiari but its a stretch :)

The relationship to Chiari would probably be life goes on and so do I.   Some days suck....others I feel perfectly normal.   Everyday I wonder what's coming..but life does go on.  

I loved this quote and am seriously thinking of getting the last part tattooed on me just in case I forget.

Ob-la-di, ob-la-da life goes on.... 
 (a Beatles reference for those scratching their heads)

Speaking of living....
We went to  Disney in May and had a blast.   I did not have one headache the whole time!  I was scared that I would have a bad day or many bad days but nope..no bad days..none, zilch, nada!

....it was awesome and I felt normal.

Making memories!

...great ones that we will remember forever. 

Disney was great and I have never felt so much like a kid than I did sitting at the base of Cinderella's castle during the fireworks....not even when I was a kid.  Absolutely amazing! 

There are moments that you thank God for.... being with my family during that fireworks show was one of them.... 

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It takes a licking and keeps on ticking...

So I left off (far too long ago) with news that I was going to have a cardiac ablation to fix my SVT.   

How did it go you ask???....

It positively ROCKED!  Such an easy procedure to fix this annoying heart stuff I had been suffering from most of my life.  I had my echo on the 9th of April and the procedure on the 10th.

I was checked in, loaded up with Valium, and wheeled off to the operating room.  The nurses were blasting Aerosmith in the operating room....I either thought these guys are awesome or boy I am in trouble :))  Turns out the were awesome!   

Dr. Patel came in and told me what he was going to do...which was to fix me.   Then told the girl with the drugs that it was time to go night night :)  The last thing I remember was telling the girl...please make sure I stay night night through this whole thing! Some stories I had read said people were awake though this....no THANK YOU!!

So did the surgery go off without a hitch? ....

Absolutely not!  This is me we are talking about and nothing about me is normal.  

I guess normally the issue is caused by something in the left side of the heart but mine was on the right.   So the doc had to puncture the wall with a needle to get to it.   He did a fine job and I didn't feel a thing.

So 5 hours after this "heart surgery" I went home.   How cool is that?   I can't even imagine what they had to do to fix this 15 years ago...medical technology not only amazes me it makes me hopeful.  If I wait long enough maybe they can fix my head just as easy....or easier at least.  

Ha!!  Saw it and had to add...it made me laugh

3 days of hanging out in the house and I was my normal self again....still amazes me!!  I keep thinking if I lean over or do something that would have sent my heart into a frenzy before that it will happen again but it doesn't....its amazing! 

Before getting this procedure the doctor said there was a possibility that some symptoms I was attributing to Chiari may actually have been from my heart.   I was excited about the possibilities.  It did fix the heart problems.   But I can't see much else that has changed.   Maybe less headaches? ...but not enough to say wow it did fix this or that.   I did fix my heart though and I am so unbelievably happy and grateful to Dr. Williams for figuring this all out and Dr. Patel for fixing it! 

Hopefully this is the end of my medical excitement for awhile.  *Knock on wood* both my BI and CM have been behaving and my only complaint is headaches...not too many and not too awful.   I can live with that!

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What is Chiari Malformation?

There are a gazillion sites on the web that discuss Chiari Marlformation.... Basilar Invagination is much more difficult.   But here are some web sites that have helped and a little more info on Chiari....enjoy!  This is exciting stuff :) 

Mayo Clinic
Wikipedia
Conquer Chiari Brochure
Cedars-Sinai Chiari-Malformation

Chiari malformation type I

Definition

By Mayo Clinic staff

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).
Treatment of Chiari malformation depends on the form, severity and associated symptoms. Regular monitoring, medications and surgery are treatment options. In some cases, no treatment is needed.

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What is Basilar Invagination?

I have found a few web sites that explain Basilar Invagination pretty well.   I wanted to share....

Cedars Sinai 
Chiari Connection International
Duke Medical Center
Article by Timothy Hain 
 

Normal MRI

MRI showing Basilar Invagination and Chiari

Basilar Invagination

From Wikipedia, the free encyclopedia

Basilar invagination occurs when the top of the C2 vertebrae migrates upward. It can cause the opening in the skull where the spinal cord passes through to the brain (the foramen magnum) to narrow. It also may press on the lower brainstem.
This is similar to Chiari malformation. That, however, is usually present at birth.

Symptoms

Symptoms vary depending on whether the spinal cord, brain stem, nerves or their blood supply is affected by the pressure.
Symptoms become apparent when the neck is bent. They include:

• Posterior head pain
• Neck weakness
• Periods of confusion
• Dysarthria (difficulty swallowing or talking due to loss of muscle control)
• Dizziness
• Loss of sensation
• Cranial nerve disturbance
• Loss of the ability to know how joints are positioned
• Lhermitte's sign (tingling when the neck bends backward)
• Weakness of the arms and legs
• Orthostatic hypotension
• Patients will go into a pool and notice that below their belly button the water is not as cold as it is above.

Complications from this can include hydrocephalus, pseudotumor cerebri or syringomyelia because it blocks the flow of fluid around the brain and spinal cord.

Causes and Risk Factors

Basilar invagination can be present at birth. If the condition develops after birth, it is usually the result of injury or diseases. If due to injury, about half the time it is caused by vehicle or bicycle accidents; 25% of the time by falls and 10% of the time by recreational activities such as diving accidents.
It also occurs in patients with bone diseases, such as osteomalacia, rheumatoid arthritis, Paget's disease, Ehlers-Danlos syndrome, Marfan syndrome, and osteogenesis imperfecta.

Treatment

If there aren't neurological symptoms (such as difficulties moving, loss of sensation, confusion, etc.) and there is no evidence of pressure on the spinal cord, a conservative approach may be taken such as:

• Drugs, such as aspirin, without steroids to relieve inflammation
• Cervical traction, in which the neck is pulled along its length, thus relieving pressure on the spinal cord
• Using a neck collar or cervical-thoracic suit

If there is pressure on the spinal cord or life-threatening symptoms are present, surgery is recommende

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.....But WAIT there's more!...

Did you know that there are studies that link Basilar Invagination and Chiari to SVT?  

 What is SVT you say?

 

What is supraventricular tachycardia? Supraventricular tachycardia (SVT) means that from time to time your heart beats very fast for a reason other than exercise, high fever, or stress.

During an episode of SVT, the heart’s electrical system doesn't work right, causing the heart to beat very fast. The heart beats at least 100 beats per minute and may reach 300 beats per minute. After treatment or on its own, the heart usually returns to a normal rate of 60 to 100 beats a minute. 

SVT may start and end quickly, and you may not have symptoms. SVT becomes a problem when it happens often, lasts a long time, or causes symptoms.

It seems I have this too....and have had it since birth just like Basilar Invagination and Chiari.   At this point in the game I am afraid what other crazy birth defects are going to rear their ugly heads before this is all over.   

Dr Williams (whom I adore) set me up with an event monitor to catch the "episodes" that have been getting more frequent over the past year.   Two weeks later we had results and he sent me straight to the cardiologist...I did not pass go...I did not collect $200... 

They clocked my heart at 249 beats per minute and multiple skipped beats....    Guess what I did as soon as they told me I  had SVT?   

If you said ....go to Google you would be correct :)   

It said SVT is not normally dangerous and is almost always treatable with an outpatient procedure called ablation.   Basically they thread catheters into your leg and neck arteries and cauterize the parts of your heart creating a short circuit.  

So I am going for it!  All these medical conditions and finally I come across one that is relatively easy to correct...I am actually excited to have it fixed.  April 9th is my echo cardiogram to get a good picture of my heart so Dr. Patel can go in and fix me... I don't have the date for the actual procedure.  

The doctor said this procedure could very well correct some symptoms that I thought were related to Chiari....the possibility that some of these annoying symptoms could go away make me positively giddy with joy!

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My third opinion's second opinion...and I still refuse to listen :)

Procrastination has always been a skill I excel at...  I knew what I wanted to post about and even had a great image to put in this post but honestly I have felt crappy lately and a little sorry for myself. We are all entitled to a pity party now and then and my party is over :)...so back to my story!

Where was I? ...

I returned home from Denver after hearing I was going to have to wait for Dr. Oro to get a second opinion.   I'd like to say I will never forget the week after the visit while waiting for the results but honestly I did.   I'm not sure if it was shock of the whole Denver trip or just another pity party but I don't remember a thing.   I do remember however getting a call from Dr. Oro that I missed....UGH!!

I hate that.   You wait for a call...THE call and you sit by your cell phone non stop, constantly checking to see if your ringer is on or if it rang but you just didn't hear it.   The ONE time you are away from your phone for 2 minutes you miss the call you have been waiting on...it NEVER fails! 

So he left a message saying that he recommended cervical cranial fusion and brain decompression...the news I was most afraid to hear.   He would follow up the call with a letter...

So,  there it is.   The guy in Wilmington suggested it....the guy at Duke suggested it....the guy in CO suggested it. 

Have I gotten this surgery yet you ask?  Nope!

1. Because I am terrified of it.  
2. Because I am not THAT bad off.  Why would I want to go through this invasive surgery that would decrease my quality of life if I am NOT suffering?   
3. Because I don't want to! 
4. Because I have lived this way for 30something years :)  and I am still alive and kicking. 
5. Because no matter how many times people have told me I need this surgery, no one has been able to tell me what will happen if I don't have it.  
6. Because I don't want to!!! 

Will I eventually have to get the surgery?   Probably.   But I'd like to think I will know when I have no choice.  There will come a day when I see the signs that I am getting worse and I will have to face this fear....
But today is not that day.

So...I am all caught up! You know my journey that has brought me here...

I learn more about these conditions and myself everyday and am finding ways to live with it....live through it.

So my journey continues and so does my blog :)   I have learned a lot over the past year through my research and have a lot more to share.

My goal....add every bit of info I have found on a million web sites to this blog...if one person is diagnosed with these awful conditions comes to this blog and feels a little less a lone....or knows a little bit more than they did before... I will have succeeded.   :) 

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Third or Fourth Opinion...I lost count!

Previously on my ramblings....  

Courtney flew to Denver CO, had lots of tests, and stood at the top of the world...in a nutshell 

My third day at the Chiari Care Center....would it be monotonous to say I will never forget this day too?  I seem to have a lot of those in the past 2 years....Well I won't forget this one either.   :) 

This was the day we were to meet with the famous Dr. Oro for the first time.   He was to go over all the tests and questions and tell me.... wait for it!!.....

"I don't know and I need a second opinion...."

Brain Humor....cause that's how I roll!

Uhhh?  Well... not the first time I heard this but I am getting use to it at this point.   He said he went through my scans and was surprised to not find a very old frail lady with major neurological symptoms sitting in my seat.   Surprise!! I'm not old or frail and don't have neurological symptoms.  

So, what do you do with someone who does not have symptoms that the brain is being affected by all these abnormalities but they look really bad?   He said typically we use a wait and see approach and operate when it is time...and surgery was inevitable but I would know when.  BUT, since my brain stem is being kinked by a rather pushy top vertebrae he wanted to get a second opinion.  

Apparently Dr. Oro just so happens to know a neuroradiologist that specializes in severe brain trauma....I'm like...uh...I don't have brain trauma?  But supposedly he is the best.

Of, course he was on vacation and I would have to wait a week to hear from him.   Dr. Oro sent me on my way preparing me in advance to hear the news I was dreading....be prepared to hear you will need surgery.  

Guess what my wonderful loving husband is doing during while Dr. Oro was talking??  He is sitting be side me sweating like he had just run 5 miles,  lost every bit of color he had in his face and looked very much like a dear looking into headlights...He was about to pass out!!!  Now, he did just fine standing there while I was having our baby but listening to this man tell his wife the worst news she had ever heard was too much...I think.   He loves me...and right then I knew just how much.  <3 

So....here we go again...walking out of a doctors office not knowing what to do and not really having any answers.   I walk out knowing that I am about to fly home and I don't know much more than when I came.  It was a heart wrenching trip home....and one I'll never forget....HA!! HA!!  :))  

Oh, I did want to add that Dr. Oro and his nurse did tell me I needed to be active, eat better, and get plenty of rest....um...I could have told me that though...

  Lastly...The comic made me giggle so I had to share. :)) 

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Standing at the top of the world!

So, back to my story after I was so rudely interrupted by my 1 year anniversary....

I had researched and decided Dr. Oro was the way to go.   I think it is absolutely insane that I booked a plane and a hotel to go see a doctor!  It still seems crazy to me but I am glad I did.   Not because he fixed me...because he didn't but because I know what I have and have someone to call when I am totally lost. 

Here is another day I will never forget.   My first visit to the Chiari clinic...I was so nervous I was sick!  It was the first day of a fun filled three days of tests, questions, and tests, and questions :)

My close friend Karen is a nurse and called this the million dollar work up.   I am sure it did cost my insurance company a pretty penny.   I did apologize in advance when I called to let them know I was seeing a specialist.  They cringe when I go to the doctor anymore I am sure.  Cigna ROCKS by the way.   I really heart them!

I'm not going to take you day by day because I would bore you to sleep....So, I answered a million questions and got 2 MRI's...one of which I got to sit in a chair and watch Ellen while it was doing its thing.   If you have ever been slid into that round hole that feels very much like a coffin you will understand my excitement over this new MRI machine :) 

On day two of my glorious trip I got to stand on top of the world....or at least very very high.  My husband and I drove a mere 45 minutes from our Denver hotel to the most beautiful scary place I had ever seen IN MY LIFE!....It was amazing. 

The picture above was taken by my iPhone while my husband and I were standing at 14,256 ft!!  Thats like a low airplane altitude.   Now, you say WHAT?  You climbed a mountain to 14,256 feet??? AND I say No WAY!! This is Mount Evans...it happens to have the highest paved road in North America.   I did however hike up the last grueling 300 feet :)  I was standing above the clouds and it was amazing.

On the way up a storm was coming in and if I am standing above the clouds in this picture it means we had to drive through the clouds to get there.   My husband was not pleased but he drove on knowing that I wanted nothing more than to get to the top of that mountain.   Have you ever seen that TV show Ice Road Truckers (IRT) Deadliest Roads?  Well it was just like that except we were in a Kia.

See the picture below?  Imagine that road twisting like that for 12 miles in the rain driving through the clouds....Beat that IRT!!

I am afraid this post has gotten far to long to hold the attention of my adoring fan....my teenage daughter and she won't read it if it looks like work so I will end this post....

TO BE CONTINUED...  (I know you are on the edge of your seat :)

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I have learned....

My recent facebook post goes like this.... One year ago today I was diagnosed with Chiari and BI.... I really wish I could say something positive about this whole experience but I have yet to find one...I guess I do pray more and try to let the people closest to me know I love them because I know tomorrow is not guaranteed for anyone. But, overall it really has sucked. Still, I hope to celebrate this anniversary next year. Maybe I will have something inspiring to say about it then. :)  

I started thinking and I guess there are some positives that have come of this.   So I guess I'm counting my blessings here...

I pray a lot more.. If I live through this or die trying I know He will be with me every step of the way.   I am at peace with whatever way He chooses. 

I have reached out to family I never knew I had...called family that I hadn't seen in decades!...why?   Because if you don't do this important stuff now you may never get a chance. 

I created my family tree complete with pictures and stories because if I didn't and I leave this planet with all these memories in my head there will be no one to carry it on.   My grandma and grandpa have passed and I would give almost anything to sit and talk with them again...just once to get those memories to share with future generations.  

I have learned....

....My grandma's sisters daughter has Chiari 1 too!  Crazyness! I have been told it runs in families....turns out it does. 

....lots of new brain words and know how to use them :)  NOT only do I know them, I can spell them!  That is the kicker because I can't spell worth a crap

....how to read an MRI scan and can show you how to use the McGregor's line and Chamberlain's line.  

I've learned Dr. Oz is actually pretty smart and peppermint oil does actually get rid of Chiari headaches (more often than not)...ice packs help....water helps....sitting up straight helps....water helps.....not bending over helps.....Potassium, B12,and Calcium helps.   Did I mention water helps?  :)   I can stress it enough.  60% of all headaches (Chiari or other) are related to dehydration.  

So if you have a headache guzzle a Gatorade before popping the Advil.  Taking lots of medication for a headache is like begging for another one!  Rebound headaches come back because the underlying cause wasn't addressed.  

....that life is way too short to freak out over little things....this one I still struggle with.  I am the parent of a teenager though...I love her dearly but there are a lot of little things. :)

Gosh I'm sure there is more but for the life of me I can't think of any....OH!!  I started a blog :)   That is very cool. 

So,  there have been some good that have come out of this whole crazy thing.   Not that I would give everything back that I learned if I could trade them...but my glass is half full and I'll take what comes. 

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Google, my friend...we meet again...third time's a charm

Have you ever watched those mystery diagnosis shows?  I always sympathized with these people just trying to find answers that keep hitting road blocks.  It's so frustrating...

I would have never guessed I'd be one of these people....but during my search for answers I came across this video... if you can spare 25 or so minutes it's pretty interesting...

Mystery Diagnosis Chiari Video

This girl could have been telling my story...from the stomach aches, headaches, heart condition, low blood pressure, dizziness.....I never got as bad as this young lady but my story is shockingly similar.   Lucky, for me I already had a diagnosis and mine was the same....Chiari 1 and a retroflexed odontoid (this is another name for Basilar Invagination).   I don't have her underlying condition elders dineros. 

So, there was a doctor somewhere that knew what this was!  This was the piece I was missing and would never have known if it hadn't been for my friend google and discovery health :) The search was on....

Do you know what you get when you google "best chiari doctors"?

About 272,000 results (0.21 seconds)

It took me several weeks of going through forums and medical sites before I found THE one who I would try.   The one I would fly across the country for and the one who would be my last hope for answers....If you know me I research EVERYTHING!...consumer reports is your friend people!   I researched my vacuum, car, camera, dentist, doctors, dog breed, furniture....you name it I researched it before I bought.   So finding someone I trust with my life was no small task. 

One name kept coming up and always seemed to have good reviews so I called Dr. Oro's office at the Chiari Care center to see if he was smart enough to handle my uniqueness....chiari is one thing but Basilar Invagination was a whole different story.   But he said he could help and I was desperate to hear those words.

This video was on his web site and I was sold.... 

So to end this post I didn't think I would be like the people on Mystery Diagnosis.  I didn't think I would have to fly across the country to see a medical specialist for a rare brain condition.

Life never quite turns out like you expect it...

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Second opinions....sometimes suck.

So....where did I leave off?....my Wilmington neurosurgeon says you have these weird  brain things and I have no idea what to do with you.

Luckily I happen to have google and know how to use it.  I was on a search to find a doctor that was not quite so overwhelmed with my uniqueness :)  First stop Duke....

 My first thought when I saw this place...if you are going to have brain surgery you may as well have it in a place that looks like a castle.....I changed my mind since then. 

Did you know they were the #9 neurosurgery hospital in the US?   I figured if they were in the top 10 they must know what they were doing.   So I make my appointment and drive the 2 hours to go to this hospital that I was sure would be filled with uber smart people....Eh, we can't be right all the time.  

So, HE walks into the room and I was sure he was going to try to sell me a used car....no offense to used car salesmen but historically you guys are labeled as slimy....and there is no other word I could use to describe this man.   He wreaked of WAY too much self confidence and I am way smarter than you attitude.  His name is Dr. Isaacs in case you were wondering....buyer beware!

He plops down in his chair leans back with his hands behind his head like he is relaxing on vacation and tells me I need a life changing surgery but will not tell me what will happen if I don't.....because he didn't know.   So why this life changing surgery then?  Your guess is as good as mine....  THEN!!...he says I can do the surgery one of two ways through the throat or through the back of the head but wouldn't know what way until I got an MRI so he could see....through the throat is  MUCH more invasive...

Only thing is..... MY MRI WAS RIGHT IN FRONT OF HIM...!  So, he didn't even look at it but knew I needed craniocervical fusion of my C1-C3 with a side of brain decompression and didn't look at my MRI?...How is that?   He must be really smart...I guess.

If you are hearing a bit more frustration in my story than usual....you have good ears... :)

So I tell him that my MRI that is right in front of him has the images he needs.   He looks and says oh,....well it looks like I can go through the back which is not nearly as fun.   It seems going through the back....while safer for the patient....is rather boring for Dr. Isaacs.  Sorry to disappoint but you will not be coming near my front or back with a 10 foot pole Dr. Isaacs....EVER!


So, I walk out once again not knowing what to do, where to go, or who could help....it was surly not this man.....I was 2 hours from home and this time I was alone.   It was a long drive home...

This was taken on my drive home from my iPhone on interstate 40...not safe but it was a moment I never wanted to forget. 

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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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