Poem and Pictures

Chiari l: Imagining A Patient's View

So I Say
Another headache
The third today

We all have them
So they say
I’m getting dizzy
My vision blurred
Your getting older
Don’t be absurd

I’m staying home
Too tired to go
Go see your doctor
She should know

Too many symptoms
You must be stressed
Take medication
And get some rest

I cannot think well
Can’t find the words
My memory slipping
My speech gets slurred

We’ll get a scan
Since you insist
If we find nothing
Please don’t persist

Don’t make me laugh
Don’t make me cry
It hurts to strain
I don’t know why

Your scan is fine
By report today
Incidental Chiari
So they say

Incidental
What do you mean
By a doctor
I have not seen

It is anxiety
That makes you so
The world is stressful
I think you know

I pulled away
Gave up, or such
Until the pressure
Became to much

I waded through
The Internet
Fearful of loosing
What I had left

It took some time
To come to know
My brain is hanging
Down too low

With every beat
The fluid flows
Deep in the brain
To the opening below

The rush of fluid
Seeking release
Finds cerebellum
Which makes it cease

The pressure spikes
My head explodes
It makes such sense
Now that I know

Working together
We’ll find a way
To make it better
So I say

by John Oro’, MD



Amanda and I

She has triplets and 1 singleton. We delivered 10 days apart from each other, our babes were all in the NICU together, and her daughter also had cranio surgery. I do believe God made us friends for a reason!

I promise

I know I promised some pictures of our fun play date with my friend Amanda (who has triplets and a singleton), but I'll save that for the next entry.

Thanks to a new chiari friend, Lacie, I came across this live, in detail, maybe to much for some of you to handle, video of a decompression surgery on her blog. It is VERY cool! It totally gave me a better idea of what Riley's surgery was like. Here is the link if you are interested in watching. http://youtube.com/watch?v=OoCmYjfWus8
It's a bit long, but totally worth it if you have the time.

The Lone Ranger

I am so excited.

I KNOW I am not a expert at reading MRI's, and I normally discuss with my few chiari girlfriends, but I DO believe I may have a LONE RANGER!

I do NOT believe that Cooper has chiari malformation! YAHOO!!!
Wouldn't that just be the best news ever!!!

Here is Coop's from this morning:

Here is Keegan's: We already know he has Chiari.

If you are looking to compare, check out the base of the cerebellum (base of the skull.)

Just for reference, you can see Keegan's cerebellum crowds the spinal cord and comes to a point by his vertebrae. Cooper's (first picture) on the other hand does not crowd or point.

I know, medically, that wasn't a very good description, but it gives you a general idea of the area we are talking about.

* Note: Just watch, I'll get the results from the radiologist and it will say HE DOES have chiari. It would be JUST MY LUCK!

Check back tonight. I will post another entry from our play date yesterday with my girlfriend Amanda and her 5 yr old, and her 2 yr old triplets! It was a HOOT!

Results? Maybe

Sorry for Keeping you all waiting for Carson MRI results.

Let me start by saying I won't rest until it is read by our NS at our May appointment.

Carson's MRI of her spine came back normal. They didn't see a syring, they didn't see a thethered cord, and they didn't see a chiari malformation.

Wait, back up.

Yes, I said they did not see a Chiari Malformation. Well, we all know that is not correct, because she has already been diagnosed with it. So, I know the other 2 things maybe easier to see, but I think I will hold my breath until our appointment in May if you don't mind.

2 other updates -

May 15th we will be back in Milwaukee to see our favorite - Dr. Jensen.
Because Carson now has chiari, we would like to keep everyone in the same loop. Especially now, because we still are not sure if she will need another surgery to help close the holes in her skull from the CVR.

Also, while talking to Jensen's nurse, she suggested that we may want to see someone in the Genetics department. So, I think we will. Maybe we will find some answers.

My mom also asked me today if I thought it might be a good idea to seek out my biological parents. You know, I really don't know. In my eyes, the damage is already done (cranio and chiari). What do you guys think?? Do you think I should try and seek out my biological parents for more answers??

Carson

Morning, well, it actually feels like 5 pm since I have been at the hospital with Carson since 5:45 this morning! UGH.

Anyhow, she did really well with her MRI. I hope to hear something by later this afternoon!

Let's keep our fingers crossed for good news.

Another Child

Thanks to my friend Kristen, She reminded me of another sad story of a strong boy facing the "ugly demons" of Chiari Malformation. This is a story about Gaby. Kristen and I met Gaby's mom, Beth, for the first time in February, along with our friend Michelle.

Please go check out these links. These links are of children who are trying to beat this ugly disease.
1. Gaby - his page is: FAILUREISNOTANOPTION (Seriously, you need to read this one)
2. Nick
3. Gabe - Riley's buddy who is also a twin.
4. NJ
And last but not least...
5. Riley

When Riley was released from the hospital in Feb. we returned to th RMDH and we met up with Michelle (Gabe's mom), Kristen (NJ's mom), and Lisa (Nick's mom) (YES, we were ALL there at the same time!). Kristen and I were are the opposite end of the spectrum as Michelle, Beth, and Lisa, but it was nice to sit and chat with them about their journeys and to get an idea what other people have been going through.

I should have realized that Frim was AWESOME when I checked in at the the RMDH house the very first time. The lady sitting at the desk asked me if I was here for an appointment or for surgery. I said, "an appointment". She quickly replied back with, " Oh, with Dr. Frim".
Every time we've been to the house, I would have have to say a good percentage of the people there are seeing Dr. Frim. It's truly an amazing feeling knowing that you are being seen by the best of the best for chiari treatment.

Oh, and the other day I was cruising through Barnes and Noble and found myself in the medical isle. I walked past a book called, "the top 100 specialist in the US". I picked it up, paged through until I found NS, and there he was.

Something tells me, we need to stay with this doctor!!

Oh what to do

I'm telling you, if it's not the kids health, it's the stupid insurance company. I am stuck. I feel like I am stuck between a rock and a hard spot.

Here is the situation:

We have a 2nd insurance on top of our primary to help with all the kids medical issues. So far, it's been WONDERFUL! We have seen little to no bills from everything that has been going on. UNTIL, Riley surgery.
At the hospital we were told that they had put an authorization through to our secondary, but it was denied. So, here come the medical bills. I have no idea how much we will end up paying for her surgery. We are already at $4100. And I have no idea if that is it or not.

So, here is the problem. I have at least 2 more children - Cooper is TBD, that will need to be seen for their chiari. Is there a possibility that those 2 may need surgery? I don't know. But, I do know that we can't afford to pay $4100 +(each) for 2 other kids surgeries.

Now, there is another doctor in Wisconsin who does chiari surgeries. Is he as good as our current neurosurgeon? I don't think so. Has he done the surgery? Absolutely. How many? I don't know.
If someone comes to the Wis. surgeon with chiari and wants a second opinion, the Wis surgeon will send them to our NS in Chicago.
So, do I keep my children with the best of the best in treating chiari, and try to stay afloat with the bills, or do I send them to another local surgeon who may not do as good of a job and only have to worry about slim to no bills?

It is hard enough having to watch your child(ren) go through surgery. You should not have to worry about how you are going to afford your child, and their condition after surgery.

On top of this......I have heard of a few stories, 1 in particular - about a young boy, Nick ,who had chiari surgery done by another NS, and the NS screwed up and just about kill this poor child. They are now seeing the same NS that we are. His mom told me that they have been coming to Chicago 1 week out of every month for the last 4 yrs (they live in Ohio). To date, this child has had 11+ brain surgeries in the last 5.5 years. Please check out Nicks link and read "My Story". It is truly an amazing story!

So now let me tell you - I have no idea what to do!!!