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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