When Doubt Creeps In

Last night was the first night since my surgery that I can say that I got a good night of rest. When I awoke this morning, for a second, I totally forgot that I had even had surgery.

Shortly after awaking, I stumbled down stairs to make a strong pot of coffee. As I was filling up the pot with water a speck of red caught the corner of my eye. I peered out the kitchen window and saw the most brilliant cardinal perched on a frozen tree in our neighbors back yard. In an instant, I felt the hand of God on my left shoulder and the words, "It's going to be all right!". Then the words of Amy Grant's song, All Right. started playing in my head:
It's going to be all right, you give me what I need ~ That it's all right what may come. What strengthens hope my eyes will never see.
Just this morning as I was washing the misty visions of sleep away, the doubt was seeping in. Making me second guess my decision to have brain surgery. Why in the world would I put myself all of this pain and rehab? Couldn't I have lived with my symptoms forever, learn how to deal with it? And then, the vision of the cardinal ~ bold, scarlet, standing out in sharp contrast against the icy background, clear and inescapable. If you have been following my blog for a while I have mentioned the symbolism of the cardinal many times. Whenever I see them they send me powerful messages right on the spot.

ALL RIGHT ~ Amy Grant

Looking out to the hills

To the setting sun

I feel a cold wind

Bound to come

Another change

Another end I cannot see

But your faithfulness to me is making it

[Chorus:]

All right

I fall down on my knees

Tell me that it's all right

You give me what I need

Years of knocking on heaven's door

Have taught me this if nothing more

That it's all right, what may come

I've heard it said

When the river's running high

You get to higher ground or you die

Well muddy waves of pain

Washed over me

And it only made me see it's gonna be

[Chorus]

When will I learn there're no guarantees

What strengthens hope, my eyes have never seen

But it won't be long

Till the faith will be sight

And the heavens will say

It's all right

[Chorus]

All Right - Amy Grant

Rescued

Just a quick post to let everyone know that John has been reading all of your wonderful comments to me and it's cheering me up a bit. I was incredibly sore and stiff this morning. Pain killers setting in so I had better sign off ~ more later, pressing on ~ Lace

We Could Do Something Big

I just love the way Chandler and Joey think ~ they get all fired up about doing something big like climbing Mount Everest ~ then reality settles in and it's downgraded to renting the DIE HARD DVD! Well ~ me, when I say I am about to do something monumental, I am all about the follow through. Brain surgery, let's do this thing, now! Less than five days and I will be on my way to being on the other side of a PFD. Not to be confused with a personal flotation device ~ lol!

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 ~

Made Up My Mind

I am all for the diminishing of FEAR ~ fear has the ability to literally drain the essence of life right out of me! So, with that said I made up my mind today and took a baby step of faith. I e-mailed TCI to see what's the next step I need to make to get the ball rolling to schedule surgery. I feel like until I have a surgery date this big black cloud is looming overhead ~ the brain tail is putting my whole life on hold ~ not to mention my family!


The facts are that by going ahead with the decompression I will be fighting back ~ not letting chiari direct my life. I understand that the decompression will help but might not completely heal me of my symptoms. I know there is no 'cure' for chiari yet ~ but I can't keep putting my life on hold.

I went on a long walk this afternoon after work and the song I posted below really spoke to me. Surprising ~ really ~ since I have had this song on my iPod for a couple of years. "Talk to the one who made you ~ talk to the one who understands ~ talk to the one who gave you the light in your eyes". What a simple message ~ so I took Sheryls' advice ~ asked God to orchestrate the details of brain surgery ~ His timing and not my agenda. I heard almost an audible laugh in response (I usually do when I 'surrender control' over to Him again and again!) I got the message that this speed bump in my life is necessary for perspective ~ but there is so much more work to be done here on Earth. ~sigh~

All Things Work Together For Good

So ~ last night I got to sleep in my own house ~ albeit on the Futon and not my bed ~ still slept like a baby all night long! It feels great being home and almost a week post-op. John washed my super dirty hair last night ~ feel so much more human! Still can't take a real shower until Feb 13th. Getting my stitches out on Feb 11th.

The drive home was pretty uneventful and relatively quick. I was pretty drugged up with pain killers and muscle relaxants which made the ride bearable. I don't really know what to do with myself now. I don't do the whole rest and relaxation thing very well. I am exhausted tonight ~ missed my afternoon nap ~ hoping for an early bedtime.

I don't want to get my hopes up too much, but seriously, I haven't had any headaches since surgery ~ my neck and shoulders don't feel as tense ~ my neck looks longer ~ could I be cured just by one surgery??? I will give it a couple of weeks and hope to get off the pain meds before completely weighing in on how different I feel.

Pain Management and Hoping to be Discharged Today

Well ~ the word around here is that I am going to be discharged today! We will probably bunk at the Variety House tonight and head on home on Wednesday so that I am sure I can manage my pain.

They took the pain pump away yesterday ~ what a difference it had made. Nice not to be hooked up to anything anymore, but I am missing the constant flow of pain medication.  So ~ I am using the breathing techniques I learned in lamaze classes ~ taking baby steps in the hospital halls ~ drinking lots of fluids.  

I am looking forward to going home soon ~ will be nice to have all the creature comforts of home.  I feel so relieved that the girls have been well taken care of by my Mom ~ she has kept them busy with activities and has been helping them to understand that I will not be up to full mommy strength for a while.  (Holy heat ~ the hospital zamboni went by my room a second time!)

Back to Mom ~ as an adult, it's hard to admit that I still need my Mom there for support ~ need her to hold my hand when I am nervous in the pre-op holding room ~ you get the picture. Just having Mom around makes me feel better.  The problem with that this time is that I didn't realize my need until it was too late for her to drove down to Long Island. So Mom ~ I definately want you to be here with me for the next surgery.

So ~ here we sit ~ John and I ~ waiting for the surgeons to make their rounds ~ the ticker tape parade will be in full swing by 11 am this morning in Manhattan.  Thanks again to everyone for your prayers and support ~ they have really meant a lot to me and have helped me to push forward and through the pain.  Especially thanks to John ~ you are my Knight in shining armor ~ true story ~ Thanks for keeping me hydrated and waiting on me hand and foot. Love you 

Speed Bump From Hell

What was I thinking when I referred to this spinal surgery as a 'speed bump'.  Today is day three after surgery and I have been either sitting up in a chair or walking through the hospital halls ~ IV in tow.  Let me go back a couple of days ~ I will warn you now ~ I just got a full dose of morphine so I am sure that half of my post will make no sense at all!

On Friday, February 1st, I awoke at 5am to get dressed and head over to the Hospital.  I was tossing and turning all night with a horrible migraine headache.  By the time I had put all of my belongings in a plastic sack and put on the oh so fashionable hospital gowns, I was in tears from my headache. I could barely even open my eyes the pain was so bad. When they came to get me for surgery it was 6:45am.  They parked me outside of the OR while they got all prepared ~ it was noisy and I couldn't keep the florescent lights out of my eyes. AND they didn't give me any type of sedative before going into the OR.  

When they were ready for me, they wheeled my right into the OR ~ got the IV in and then since I was in a lot of pain already from the headache they decided to go ahead and knock me out. I remember breathing in the anesthesia and thinking "It's not working ~ I'm not falling asleep!" Next thing I remembered was waking up in the recover room and thinking ~ "My headache is completely gone and for the first time in my life I was totally nausea free!"

The scoop on the results of my surgery ~ Dr. M said that I was tethered really tight ~ like a bow.  He also believes that my tethered cord was the cause of my Chiari. Then he said something that totally blew my away.  He said that he wanted to wait 3-4 months and see what happens. He was pretty certain that my herniation would shrink a lot now.  WOW ~ SERIOUSLY!! So ~ now I might be good to go in a couple of months and then maybe skip the whole brain surgery thing would be awesome! 

So you are probably wondering ~ how's the pain ~ hurts bad ~ really bad ~ but I've got some good drugs to combat the pain. I have muscles in my back that I never knew I had! I am going to sign off for now ~ morphine is kicking in and it's getting harder to type. Thanks so much for all of your comments ~ John has been reading them to me when he comes to visit me. Keep the prayers coming for healing and less pain.

Let's Call This One A Speed Bump

Call me crazy ~ but I really don't see what the big deal is! This first surgery is just like a kinda big speed bump compared to the big bad brain surgery. A "warm up" to the big dance ~

This weekend was filled with time spent with friends. Walks ~ meals ~ movies ~ prayers ~ and lots of phone calls. I am profoundly amazed at the outpouring over Lil ole me ~ Seriously ~ thanks to all of you who have reached out to me ~ feels good to be facing surgery knowing that there are a lot of prayers being lifted up for me.

My last day at work is tomorrow before my extended leave for the Chiari Spa! Feels so weird tying up loose ends ~ passing the baton. I am so blessed to work with some amazing people ~ they were there when the now infamous phone call came in ~ breaking the news to me that I had something in my brain called a Chiari Malformation. They have seen me at my worst and yet they can still joke around with me about blaming everything on the brain tail. Seriously ~ I love all of you guys (and girl) ~ your support has meant the world to me and has really eased this journey for me. Even though I'll be out of the office I will be lurking on-line ~ I expect a good flow of IM's from the 'green room' team ~ or I will threaten to send you guys left over brain tail bits and pieces ~ TRUE STORY!

Gotta finish up packing tonight ~ how do I pack for a stay at the hospital ~ kinda silly if you ask me. I am sure I will be wearing the uber luxurious hospital gowns the entire time I am there!

Deep Inside This Armor ~ The Warrior Is A Child

The last couple of days have been really rough on me ~ nausea /vertigo/ headaches / trouble breathing / insomnia ~ good to be able to see the first surgery on the very near horizon. I got FOUR letters from my insurance company today. My heart instantly started to race as I was filled with anxiety ~ will they pull the rug out from under me just when I thought I was actually going to have my surgeries done?

My fears were instantly quelled as I read them one by one ~ approved, 3D CT Scan, approved inpatient surgery 2/1/08, approved outpatient procedure 3/6/08, approved inpatient surgery on 3/7/08 ~ all signed by the same medical director. If I could, I would drive over there right now and give Mr. Medical Director a huge hug!!!

So ~ getting my ducks in a row ~ results from the echo cardiogram were normal. Taking it day by day ~ drawing strength from my faith ~ daily fighting battles against the doubt and fear in my head.

The Warrior is a Child by Twila Paris

Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing, strong beyond my years
But they don't see inside of me, I'm hiding all the tears

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
Deep inside this armor - the warrior is a child.

Unafraid because His armor is the best
But even soldiers need a quiet place to rest.
People say that I'm amazing - never face retreat
But they don't see the enemies that lay me at His feet.

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and look up for a smile
'Cause deep inside this armor

Deep inside this armor
Deep inside this armor
The warrior is a child.

What Does Spinal Surgery Have to do with Chiari?

When I tell people that I am having spinal surgery prior to the brain tail surgery I often get blank stares and perplexed looks in return. What does the spine have to do with the brain?? Well ~ everything ~ they are connected. I thought I would take a moment to try and explain the reasoning behind the surgery to release my spinal cord.

Studies have proven that Chiari can be acquired due to a fatty filum terminale (thread like structure that connects the lower end of the spinal cord to the bony spinal column).

"A filum which is unusually thick or fatty may lose its natural elasticity and pull down on the spinal cord, effectively placing it in traction. When this force is enough to pull the end of the spinal cord below the L2 vertebra it is considered to be tethered cord. This type of downward traction can cause symptoms such as bladder and bowel dysfunction and leg pain and weakness. A tight filum is treated by cutting it and releasing the tension."

So basically, TCI believes that my brain tail is being pulled downward into my spine due to a tight filum terminale. The good news is that the only side effects I have from this right now are weakness and pain in my legs. By having the surgery now I will avoid permanent neurological damage if left untreated.

The procedure to release the thickened filum involves a laminectomy at one or two levels in the lumbar or sacral spine to expose the site of the tether, and a division of the tight filum is made. The filum has no neurological function. After the surgery I will have to lay flat on my back for 24 hours to prevent a CSF leak.

If you want more info there are some links on the sidebar on my blog ~ TCI has made the ground breaking discovery that ties Chiari to Tethered Cord ~ truely amazing stuff. You can also click here for an explanation of the TC surgery.