Preparing for Tethered Cord Surgery

Since this is a quickly growing phenomenon with patients who also have Chiari, I hadn't heard a lot about preparing for the detethering surgery. I am happily at my 6 weeks post-op date and will share with you my thoughts on the topic.

Emotional Prep:

Since I had the 'occult tethered cord' I talked with a lot of other patients who had the surgery to help convince me that even though my TC didn't show up on an MRI ~ it was still there and needed surgical attention. Also the affirmation that if you have Chiari and Tethered Cord (TC)~ it's best if the TC is addressed first and then the Chiari. Also, please don't be afraid to ask your surgeon to explain in detail what the surgery entails, this greatly alleviated my doubts and fears.

Physical Prep:

I did a lot of core exercised to strengthen my stomach and core muscles in anticipation of using them instead of my back muscles.

What to expect physically?

• Keep in mind that everyone has a different pain tolerance, so don't be shy about asking for pain medication. If you are lucky enough to have a pain pump button at your access ~ don't be shy in pushing it for relief!
  
• I won't lie to you ~ the first couple of days are really tough and painful.


• Get up and walk as much as you are able ~ it will be painful but the more you walk the better you will feel.


• I had heard that nausea is a big symptom after surgery, so before the surgery I expressed my wish not to be nauseous and so I had some kind of medication go right into my IV the whole time I was in the hospital and I never felt nauseated the whole time.


• You will most likely have circulation boots on your legs when you wake up from surgery. They are like blood pressure cuffs and they are annoying at first but you get used to them. They help prevent blood clots from forming since you will be bed bound for a couple of days.


• You will most likely have a drain stitched into your lower back ~ don't worry ~ you probably won't even know it's there ~ and they will un-stitch it before you leave.

Random Thoughts:

• If you are traveling by car back home, grab hold of the handles near the roof of the car and pull up when you are approaching a bump.


• Bring a small pillow to put behind you in the seat to support your lower back.


• Ask for extra heat packs from the hospital to take home with you ~ they greatly alleviate the pain the back.


• Bring some kind of moist facial wipes to wash your face with while in the hospital ~ it feels so good to get your face clean and makes you feel a little bit more human.


• Eat LOTS of BRAN products ~ FIBER ~ trust me ~ you will need them.


• I experienced vertigo every time I would lie down or turn over in bed ~ it will pass ~ only lasts about a week.


• A positive attitude goes a long way. To fight cabin fever, try to plan an activity each week that you can look forward to. It will greatly lift your spirit.


• When you are ready to toss the sweat pants in favor of your favorite jeans, put on a camisole top and tuck into your jeans to keep your incision from rubbing on your jeans.


• Everyone's recovery is different. At 5 weeks post op I was walking a mile 5 times a day and doing some select PT exercises at the gym.

If anyone has more questions on the detethering surgery, please feel free to e-mail me at: lacieheiser@gmail.com. Our dear friend Queli will have her detethering today @ 12:30pm ~ I am sure she will be able to post on this topic soon when she is up for hopping on the computer again. Hugs to all of you ~ Lace

Velveteen Rabbit

(reposted from other blog- regarding spiritual jouney towards surgery next month)
Ruffled, worn, and falling apart, the veveteen rabbit rest speachless on the floor.
The trip has been exhausting, and the journey long.
Each gentle guiding stroke, is now obvious from the prevailant bare areas where fur once lay, soft and clean.
The fur that remains is now dull and blemished.
The process of becoming real is not so pretty :(

I can't help but look towards surgery, and be reminded of the velveteen rabbit.
My body is worn, ruffled, and falling apart. And it will only feel and look worse in the weeks to come.
What will come from it though is one more step towards what God planned for me to be.
A lot of people think Chiari falls outside of the grace of God; outside of His original plan for me; not what He wanted for his child.
I don't agree.
Although the journey has been long, and its trials evident in my worn fur.........it has all been a series of AFGOs leading me to the raw realness of who I am to become.
AFGOs for those who don't know me, stand for Another Freakin Growth Opportunity. Ofcourse the original version of that I was given has been cleaned for all eyes and ears to take, but either works.
Life is full of AFGOs.
Ugly, painful, wonderful, AFGOs which both make and breaks us.
Yes make AND break.
Not either or.
Refinement burns out the ugly dark pieces. It isn't a gentle process that you come out of unscathed.
The brakes and tears are important; they are Gods wind for us, making our root in Him stronger.
Never feel sorry for me for having this condition. It isn't as debilitating as it is abilitating.
It has taught me far more than words or teachings ever could.
It has planted me stronger in my faith, and brought me closer to God.
But don't expect me to face each new AFGO with a grin on my face.
I don't like 'em.
There, I said it.
AFGOs stink.
They are uncomfortable, usually painful, undisirable times.
They are meant to shed off that next layer to get to the core. And like on onion, as they layers are removed, tears may result.
And this week(or next, I am sure) "How are you?" isn't the best way to greet me if tears make you uncomfortable.
I am emotional, almost bipolar in my degrees of emotion in fact.
I'm am smack dab in the middle of an AFGO, and I ain't happy about it.
But I do still have joy. Joy in the fact that I am held to a greater purpose than this body can possibly restrict me from.
I know that there is good on the otherside of this mountain.
So a better way to greet me perhaps it to just say "keep climbing".
I am almost at the peak, where I will be able to see the road for miles ahead.
Until ofcourse, I hit the next mountain. Unfortunately our lives are not made of one big test, but a series of 'em....... us humans are quick learns as we think we are.
So feel free to join me on this journey ahead............just know you might see tears along the way........and that's okay.
I gotta mountain to climb.
Ofcourse, if someone has a drill to go right through it, I will take that too.........
But for now, I'll keep climbing, loosing some fur along the way (Huge hunk from the back of my head to be exact) Each step to becoming more authentic in my walk.
Sorry this blog is so full of metaphors...........just thought you all could relate more than you could to brain surgery. We haven't all had someone drill into our sculls, but we have all been on this journey.
Take care of you,
Q

Defining Self- post Diagnosis

Yesterday, I was talking to someone about redefining myself after Chiari.
Thought it would be an interesting topic for discussion here.

I know for me, I had already had to go through that awkward adolescent phase after I came into recovery for my eating disorder 10 years ago. I had to figure out who I was without the anorexia.

So I thought I was fairly confident in who I was by the time the news of Chiari came.

But once it got to the point I couldn't work anymore, I found myself once again, undefined.

Prior to Chiari, I was a student, a therapist, an intern, and strived to be the best at all my roles.

Then in what seemed like an instant, it all faded. I stayed in school to keep my insurance, but my drive was no longer there and my grades went to mediocre at best.

I had no identity.

I was stripped of everything, and left with only two roles in life; being sick, and a child of God.

And believe me, I wasn't like "WooHoo! It's just you and me God! How awesome!!"

No, I was far from it. Even though I clung to my relationship with my Lord, I still could help feeling somewhat abandoned.

How lonely that time was.

Sure I had a lot of support, and people who cared about me. But I still felt alone inside, not sure of what was to be expected.

And I even avoided the Chiari boards online. I didn't want to know what others were going through because I was afraid to know what my future looked like.

It came to the point that I realized that I had to redefine my definition of self.

Who am I?

Who am I with this?

This started a new journey.

One where I had to define myself my God's standards, not the worlds.

And the Christian community was not always supportive.

There are Christians out there that believe that illness is a direct result of sin, or separation from God.

How bogus.

God made this body, with the malformation.

So what do you do with that?

My redefining came from the struggle of life with Chiari.

I found myself in situations where I had to trust God solely to get me through.

And found through it, that my relationship with Him grew stronger.

I no longer felt alone, because He helped me feel the touches of all the hearts around me wanting to help......

Which I balked at first.

Miss Independent couldn't have someone help her with basic self care.

But I had no choice really.

And out of that lack of choice, I found that I had prided myself on something so selfish. I loved to help, but couldn't receive it. Which, when you think about it is crazy!

Anyhow, I babble sometimes relentlessly.

The point is, that through this process I found myself in a new place where I feel more in my own skin than ever before.

My roles, and who I based myself on before, did not give me the satisfaction that I sought.

But I didn't realize it, until I finally let go.

The Big ?: How much hair will they take?

I know when my sister faced a very serious brain surgery (Non-Chiari), involving a good chance of possible death, or further stroking, or rupturing of her anuerysm. She had only one question:
How much hair are you going to shave?

Sadly, this is a concern for many of us. I know it was one of my first questions when I faced my first surgery (decompression). And this concern came from someone who actually shaved her head in college to make a few more bucks for rent.

Surgery is important.

But hair loss is personal.

And especially since it is out of your control. You aren't going to the hair dresser, and saying go ahead and shave it. You are going under, knowing you will wake up with less hair.

It is a legitimate concern.

Experience has taught me, that surgeons aren't into shaving more than they have to.

I am sure the amount of hair is based on the surgeon, and the person......and possiblly based on what kind of mood the surgery prep guy is in at the time of hair removal.

For me it has been as followed:
PF Decompression: on the back of my head from the indent down was shaved.
Shunt: A small patch on the front right side, directly in line with my right eye on the very top of the scalp (it was completely not noticable on me)

Ironically, as I face sugery, I am thinking again: How much hair?

I am scheduled to have the ICT, which means two bolts in the sides of my head.
Then I have the PFR, which is the decompression in the back;
Plus they are using a skin graph, which is going further up the back.
And then they are putting in a drain (which mostly likely will go in the upper right side where my old shunt was, and there is already a hole in the scull)
And possiblly a shunt added to the mix.

It sorta sounds likemy head will be more shaved than not.

Anyhow, I sort freaked out the other day when I realized this could be the case......(when I was already in tears from pain, and pain anticipation, if you read my post on my other blog)

But now I am thinking I might turn this uncertainy around around.

I am asking the docs at TCI how much, and if more hair is being shaved than not, I might have it shaved the day before I go up so the hair could be donated.

It is a meek way to gain some control in the situation I am sure.........but it feels better to do it that way, then to wake up with crop circles.

If the hair removal will be minimal, I will just let my hair dresser deal with it post-op.

There is nothing quite as refreshing as post-op hair cut :) Specially since my hair is usually dry and dull the months after surgery.