Just Throw It To the Cat

I was doing some homework last night, viewing the latest Tethered Cord video hosted by my brilliant surgeon, Dr. Bolognese at TCI. Skyler has an appointment with a neurosurgeon in late September to discuss the possibility of a tethered cord diagnosis and I want to make sure that I have a great deal of ammunition. You can watch the video by clicking on this link (Chiari TCS) http://www.chiariinstitute.com/Videos/index.html 

So what's up with the cat reference? Dr. B made a reference in the video to the filum terminale (a slender, threadlike prolongation of the spinal cord from the conus medullaris to the back of the coccyx) ~ basically the filum is connective tissue and is not a nerve structure (does not conduct electricity), loosely anchoring the spinal cord to the spine. His humor is so dry and totally unexpected from a neurosurgeon ~ he says that if you cut the filum terminale and throw it to the cat then you will be fine. LOL ~ What a great illustration! Amazing how such a harmless piece of connective tissue can cause so much damage!

He goes on to explain that if you have a boat anchor with a rope that is too small there will be some tilting of the boat. Love the way he explains things so simply so that you can understand what is going on. My instincts are telling me that Sky is wired the same way as me and I am praying that by having her detethered at an early age she won't ever have to have brain surgery. Praying that the tethered cord is obvious and visible so that there is no question that she has it.

Row of Ducks

Today DH & I took Skyler and Hannah to the doctor for a check-up so that I could get all of their medical papers for camp officially filled out and signed. Clearly they are both very healthy kids ~ they are rarely sick ~ I can't even remember the last time we went to the doctor for a sick visit. We are truly blessed to have such healthy kids. Anyway ~ my main reason for bringing them in was to bring their pediatrician up to speed on my health journey and inquire where to start with the kids.


A vision of a giant can of worms comes to mind ~ a huge tin can writhing with Jurassic worms! Seriously, am I ready to find out if my daughters also carry the mutated genes that create too much collagen, occult tethered cords and chiari malformations? Realistically, if we do find that they are going to need surgery, I at least want to get my brain decompression out of the way so that I will feel better and can focus on nursing them back to health. Deep breath ~ sigh ~

So while the unassuming pediatrician was filling out the paper work we had trucked in to the office I gave her a subtle warning ~ I told her I had some questions ~ she said she would love to multi-task but wanted to finish filling out the paper work first. I told her I had a 'Double Jeopardy' question ~ she later told me I should have called it 'triple whammy jeopardy'!
After all the paper work was completed, I started the conversation with, "Are you familiar with a brain malformation called Chiari? A collagen mutation called Ehlers Danlos? A spinal deformation called 'Occult Tethered Cord'? You could see the immediate concern on the doctor's face. I tried to sum up my health abnormalities in 3 minutes ~ then voiced my concerns that my daughters might also have the same conditions. After much dialog back and forth ~ we decided to go ahead and start with my youngest, Skyler. She's got a couple of external markers indicating TC and of course with the uber bendiness of her joints she oozes with EDS already ~ So I guess you could say that I am getting my ducks in a row.

Our pediatrician remarked about the calmness we all possessed while talking about spinal and brain malformations ~ heavy topics ~ HUGE ~ but you know what? I have had a long time to sit with the information ~ mulled it over in my brain many times. I guess you could say that we are all a little callused. I have done my homework. I know what is at stake ~ if left untreated, my kids will probably be facing brain surgery some time down the line. If there is anything in my power to prevent this from happeneing ~ I will do it. But seriously ~ how crazy is all of this?! My youngest child is healthy ~ no complaints ~ active, energetic, creative, loving ~ nothing is shouting 'occult tethered cord'~ but I have an intuition that something is not right.
I was so relieved when our pediatrician sat and listened to our story without missing a beat ~ no rolling of the eyes, no deep heavy sighs, no interrupting me in mid-sentence. We are blessed to have a doctor who is genuine and caring. She agrees with me and supports getting Skyler checked out first ~ see what we find and go from there. You know how I have talked many times about perspective ~ how God sees the whole picture and we see just a tiny view of what is happening. Well this afternoon my perspective came into focus just a little bit more. Maybe the reason why I am going through all of these Chiari pains is to prevent my children from suffering. Seriously ~ I am still amazed that one little MRI turned my world upside down and brought instant clarity at the same time.


Maybe there is something wrong with me, but this progression of events seems as it should be. I'm not freaking out about the possibility of going through all of this with my kids ~ All is happening for a reason ~ reasons I can't possibly fathom. But through it all I hear the sound of God's gentle and powerful voice (I hear Him as James Earl Jones sometimes in my head ~ think Mufassa from Lion King) telling me that He will not leave me or forsake me. There is nothing too big for Him to handle and I trust in the truth of that statement. Oi! It's been a while since I have done some heavy blogging ~ but there it is ~ more developments to follow ~

Holder of Precious Things ~ www.hulu.com

My first week back at work was a little rough on my body both physically and mentally. Getting up at 5:45 am was definitely a rude awakening since I was used to rolling out of bed whenever I felt like it for 3 months. Sitting in a rolling chair all day also took it's toll as I worked on finding way of sitting that was the least painful position. I have found out this week that I am finally able to discern and define the differences symptoms of a tethered cord and chiari/cranial settling effects.

Although the tingling/numbness in my arms and legs is gone I am still feeling stiffness and pain in my neck and the back of my head. This next week will be a doosy as the weather forecast is calling for a low pressure front to settle like a blanket over our area and bring rain off and on all week long. But on the brighter side of things I found a new and fun website yesterday. For an avid movie/TV watcher it's been fun exploring all kinds of old and new tv/movie clips. Check it out for yourself ~ http://www.hulu.com/ .

Here are some of my favs so far ~

Spoiler Alert ~ If you haven't seen JUNO yet don't watch the clip below.

In The Blink of An Eye

Today was my first day back at work. Wow ~ 12 weeks really flew by! After spending all day looking at a computer screen my eyes are feeling a little bit googly! Getting back into the swing of things wasn't as hard as I had anticipated and ~ shocker ~ my brain seems to be working better than before the tethered cord surgery.

Something unexpected that happened today was my re-introduction to my desk chair. Clearly, a swiveling desk chair doesn't seem threatening to the average person. I've never had a problem with my chair before ~ but now ~ every time I moved in the chair I winced. I never realized how much I rolled around in the chair during the day. Now I have to be careful not to accidentally fall off the chair or pull my back out of whack while sliding around my cubicle! Maybe if I put some googly eyes on my chair I will know where I stand with the chair. Hmmmm ~ I just might have to search for the perfect pair of googly eyes now!

During my drive to work this morning I heard the song, "In the Blink of an Eye" and realized how time really flew by while I was home recovering. Of course I had lots of grandiose ideas of projects that would keep me from being bored. I still have a long list of movies I have yet to see. Time totally got away from me! What's more amazing is that the memory of the pain I felt seems to have faded. There wasn't one time during my recovery that I broke down and cried from the pain ~ I wasn't expecting that reaction at all. I found out that my pain tolerance is pretty high. These things were encouraging to me. Press on ~ push through to the next obstacle. ~ Sigh ~ So, what's next? Waiting for my real life to begin ~ probably ~ but trying to stay in the here and now and not look too forward into the future.

"In The Blink Of An Eye"~ Mercy Me

You put me here for a reason

You have a mission for me

You knew my name and You called it

Long before I learned to breathe

Sometimes I feel disappointed

By the way I spend my time

How can I further Your kingdom

When I'm so wrapped up in mine

In a Blink of an eye that is when

I'll be closer to You than I've ever been

Time will fly, but until then

I'll embrace every moment I'm given

There's a reason I'm alive for a blink of an eye

And though I'm living a good life

Can my life be something great?

I have to answer the question

Before it's too late

Cause in a Blink of an eye that is when

I'll be closer to You than I've ever been

Time will fly, but until then

I'll embrace every moment I'm given

There's a reason I'm alive for a blink of an eye

If I give the very best of me

That becomes my legacy

So tell me what am I waiting for?

What am I waiting for?

In a Blink of an eye that is when

I'll be closer to You than I've ever been

Time will fly, but until then

I'll embrace every moment I'm given

In a Blink of an eye that is when

I'll be closer to You than I've ever been

Time will fly, but until then

I'll embrace every moment I'm given

There's a reason I'm alive for a blink of an eye

Survivor

What does it mean to be a survivor?

noun ~ one who lives through affliction
verb ~ to remain alive; to carry on despite hardships or trauma; persevere; to live; persist; to cope with a trauma or setback; to outlive

Considering the definitions above it's safe to say that I am a survivor. I can add 'spinal detethering survivor' to my growing list. But wait ~ since I have avoided brain surgery does that make me a 'brain surgery survivor?' Those of you who have had brain decompression probably totally don't agree with me at all ~ and I totally understand where you are coming from. It's a right of passage!

The old survivor guilt feeling is creeping back again ~ I know ~ it sounds narcissistic ~ but I know this feeling. I felt it when my brother died when I was two years old. Why was I left here on earth to live and he died? Then again I felt cheated when my labor/delivery of my first child ended in an emergency c-section to save both of our lives ~ again ~ I survived a near death experience ~ but felt cheated out of going through the whole natural child birth experience. That's a HUGE right of passage ~ I was up for the challenge ~ but God had other plans for me.

This brings me to today ~ it's been exactly one month since my spinal detethering. They knocked me out ~ opened up my back ~ exposed my spinal cord ~ detethered me ~ then I woke up. Alive ~ survived ~ again. I spent 17 months preparing myself for the decompression brain surgery that was scheduled for March 7, 2008. I was ready to hunker down and just muster through it all. Then ~ all of the sudden ~ my surgery has been canceled and I don't have any more Chiari symptoms! Just because I don't feel the effects of my dear brain tail doesn't mean it's gone ~ it's still there, but now it's fully hydrated and happy. My brain tail has received a last minute stay of execution from a call from the governor ~ so the brain tail has survived a near cauterization! Survivor

You can dismiss my post as the rambings of a fully hydrated brain tail ~ me, I am pondering my responsibilities as a survivor and how I can give back others who are going through hardships and trials.

One and Two Weeks Post Op

I have had many a request for pictures of my surgery site ~ so here they are! I have posted the photo towards the bottom of the post for those of you who are squeamish ~ I promise ~ all things considered the pics aren't bad at all! My question is how long is it going to take to wash off the pen mark they made on my back???

Just in case you are not quite sure what you are looking at, the photos are of my mid and lower back. Even after all the links and lengthy info regarding the surgery many of you still thought that the surgery site was in my neck ~ true story! I am amazed how the detethering has alleviated almost all of my symptoms ~ and I am still in awe of the brilliance of the TCI docs. My next step is figuring out how to tactfully write a letter to my four local neuro-surgeons to let them know the outcome of my surgery. Mostly I want to educate them on the correlation between the tethered spine and the brain so that other Chiarians like me might avoid brain surgery!

I am still trying to ease into the whole 'recovery ' mode of resting and relaxing. I am off all pain/muscle relaxant meds and yet every night I am having these uber intense dreams with intricate and complex plots. I wake up exhausted from my dream journeys. At first I attributed the dreams to the Morphine ~ but now that I am not taking it anymore I am perplexed. Maybe since my brain tail has plenty of CSF it's going into overdrive ~ anyone out there have similar experiences?

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.

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.

Reflecting

A few months ago I had the pleasure of meeting a fellow chiarian for breakfast. We had exchanged e-mails ~ shared our chiari journeys ~ actually meeting her face to face was like being reunited with an old friend. Even though she has already had her surgeries and is way ahead of me in her chiari journey, we share a kinship ~ bonded by the brain tail.


One of the things that she said to me that has stayed with me is the fact that in the months prior to her surgery ~ she can't remember anything in that time period. I am finding the same is true for me. I seem to be on auto pilot ~ plodding through each day ~ and yet time seems to be flying by at warp speeds at the same time!

I am trying to stay focused on the present so that I am here in the now and not in the past or the future. Searching for that inescapable peace and serenity that comes from knowing that everything is going to turn out fine ~ fighting the urge to grab my passport and get the heck out of dodge! But truth be known, the brain tail goes wherever I go ~ serenity now!

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.

Triple Threat

For one of the first times in my life I am trying hard to wrap my mind around the information we received yesterday at the Chiari Institute. First of all, I was feeling a little out of place once we finally got there. Let's face it ~ there are many people who are worse off than me. I work full time and although it might be a little hard at times, I still manage to run a 5K a couple of times a week ~ definitely NOT the picture of someone in critical condition.

The first person I saw during my stay at the Chiari Institute was a nurse. She spent an hour with me doing a full medical history work up on me. Next, I spent time with a neurologist, who after examining me, wrote me some scripts for some high powered medication should the need arise to take them. Then he explained that someone who is very highly skilled at determining if someone has tethered cord syndrome would be looking at my spinal MRI and then crunch some numbers to determine if I had it or not. I kind of nodded politely when he was telling us all of this information. I had been tested for this and wasn't really showing many signs that I might have it ~ so I wasn't overly concerned. We then had a break until 4pm when we would meet with the neurosurgeon, Dr. B. It was lunch time so we walked down the hill to a cute Italian bistro for a bite to eat.

The day was going good so far, we hadn't learned anything new, but it was extremely comforting to be talking with the chiari experts about my symptoms and condition. We were busy eating lunch when I got a call on my cell phone from Dr. B's assistant ~ she sounded urgent on the phone ~ she asked where we were ~ they needed us NOW! So, we paid the bill and headed uphill to the institute. It was 1:30 and Dr. B was ready to see us. We were thinking, this is great news, he's early and we will be getting out of here and on our way back sooner than expected. I was so not prepared for what came next.

Next thing I knew, I was meeting the world renowned Dr. Bolognese. I liked him immediately, he was smart and witty, yet professional. Then, we realized that we were headed up Shit Creek ~ He proceeded to tell me that I am basically a "triple threat" ~ not only do I have a significant Chiari Malformation (yes ~ I already knew that!), but I have Ehlers Danlos Syndrome and Tethered Cord. We both looked at one another, eyes wide open, feeling like we just had the wind knocked out of us. Then Dr. B told us his surgical plan for me was to do THREE surgeries ~ not one, but THREE!

The good news ~ I am trying to look at the positive side of this ~ is that I am in no immediate danger of permanent damage. The ball is in my court ~ more like an elephant than a ball. It's going to take some time for me to digest this new information. So ~ we continue to play the waiting game ~ all the facts are on the table ~ I am praying that I will get a clear sign so that I know when the time is right to get started on the surgeries. Where are those $%^&*$%^#$ paddles when you need them?!?