I Can Only Imagine

Blogging has been a way for me to express what I cannot vocalize and I am trying to get back in the swing of things by blogging more. As my one year post decompression date is beginning to appear just over the horizon I seem to be doing a lot of reflecting. There were a lot of blogs that I started and they ended up in my draft box. This one I actually started on 10/12/07 ~ I thought today would be a good day finally post it.

Facing fear ~ staring it in the face ~ thoughts of death and dying have come up for me, for obvious reasons. But you see, to die would be devastating for my family and friends, but for me, I can only imagine.

When I wrote my thoughts about staring death in the face, I hadn't even been detethered yet ~ but I was processing the imminent fear that comes when facing brain surgery. I look back and smile knowing that putting it all out there, expressing my fear, laying it all down for the Lord to take it from me ~ my fear was totally dissolved by the time I had surgery.



WE all face fear on a daily basis ~ rather it's a fear of spiders or death ~ we all deal with it in different ways. For me, fixing my eyes on eternity put everything in perspective and it's a good reminder for me today. I woke up with a brain tail headache ~ it's the 13th and a Friday today ~ not that I am superstitious, but I am not firing on all cylinders today. Note to self ~ no operating heavy machinery today!

Brother Fire

Fire is such a primal energy source and yet I still would fail miserably at being a pyromaniac. Seriously, I have so much trouble lighting a fire in the fireplace. I can get the fire lit, but it fails to meet my expectations ~ how silly is that?! I want to see a blazing fiery furnace, but a good fire takes patience and time. Just because there aren't leaping flames doesn't mean that heat isn't being generated. I know, this is all so elemental, but it made me ponder a bit on this snowy, icy night. Just for the record, no, I have not fallen off the wagon and started using morphine again!

Fire makes me think of one of my favorite Bible stories, The Fiery Furnace. The bulk of the story is about three men (Shadrach, Meshach, and Abednego) who would not bow down and worship a golden statue so the king ordered them to be thrown into a fiery furnace to die. They claimed that God would spare them from death. The fire was so hot that it killed the men who threw Shadrach, Meshach, and Abednego into the furnace. The king was awestruck when he saw FOUR men walking around in the furnace. Perhaps an angel was sent to protect them from death. When the men were ordered out of the fire, not a hair on their head was singed.

I've rambled on again ~ surprised? But really, I learned something from brother FIRE today, even if there aren't raging flames, energy is still being created. It mirrors my life right now ~ my steady recovery. I might want an intense flame, but in reality I have red coals, providing a steady flow of heat. It's so painfully hard to pace myself in this recovery process. I don't feel pain until I have waaaay overdone it. I keep having to remind myself that this is going to be a slow process. Thank you FIRE for subtly reminding me and teaching me to be more like the slow burning coals.

Operation Dandelion

I woke up this morning with the all too familiar pounding of the brain tail. Clouds have filled the sky on this dreary Friday ~ low barometric pressure ~ headaches. Then I remember my all too enthusiastic assault on the dandelions in our front yard yesterday afternoon.

It was the girls idea ~ seriously ~ I taught them last week how to dig down to the roots and then pull the weed from the ground so that they don't grow back. It's now a game to see who can find the dandelion with the biggest 'Medusa' roots! After an hour of slaving away at evicting the all too plentiful weeds we had filled an entire lawn bag!

Pulling weeds from the ground was therapeutic ~ getting rid of the things in my life that may look pretty on the outside ~ they have a vice-like grip in the soil of my life. Removing them is a lot harder than it looks ~ but then the lawn looks more beautiful than before. Seriously ~ I was amazed how strong the roots were on these tiny plants ~ simply amazing!

Note to self ~ as fun as pulling weeds may be ~ leaning my head over and straining to pull weeds out of the ground is not a Chiari friendly activity ~ must restrain myself from a full out assault any time soon.

The Ball Is In My Court

The past several days have been a whirlwind and I apologize for not blogging sooner. Last Saturday we drove down to Brooklyn to celebrate my nephew's first birthday. After a long day of fun we drove back home and then packed bags and headed back to Brooklyn on Sunday afternoon.

Monday morning began with an hour spent in a MRI machine to get a look at my brain tail. We had seven hours to kill until my neurologist appointment at TCI, so we looked on the map and found a state park nearby. The sun was shining and it was a good day to spend some time outside. We picked up some sandwiches for lunch and headed over to the park. After a little hike in the woods and a brief encounter with a ribbon snake we ate lunch and enjoyed the day for a while.

Then we headed over to TCI and waited and waited for our appointment. So the verdict on my health ~ I am healing up nicely from the tethered cord surgery. I can expect about a year until my back feels 100% again. As far as my MRI films go, my herniation now is about at 12mm ~ which according to my calculation is 2 mm more than it was last April. I am still shocked when I look at the MRI scans of my chiari ~ there is brain matter stuffed into my spinal column like a tightly fitting cork ~ it's just not right ~ it shouldn't be there! My brain stem measurements had decreased a bit which is great news and probably the reason why a lot of my symptoms, especially vertigo, have vanished.

So what's the prognosis for a decompression surgery? Well, basically the ball is in my court. I am definitely a candidate for surgery, but it's my decision when to have it done. (Is there ever a 'good' time to have brain surgery???) I should feel tremendous relief, but I don't. Why? I am still experiencing crushing Chiari headaches, blurred vision, my neck is still popping and cracking when I look from side to side. So I guess I have resolved myself to waiting ~ wait and see what happens. I don't understand why I have come this far with my struggle to have it fizzle out at the end. I am completely prepared for brain surgery but for reasons beyond my comprehension it's not in God's plans for my life right now. ~sigh~

Half Empty

Driving into work this morning I glanced down at my gas gauge and made a mental note to put gas in the car later today ~ I am past the half full mark. Gas prices in NY have risen to $3.73 per gallon and that's for unleaded. Seriously, I shouldn't complain, my Prius has been getting about 48 miles to the gallon lately ~ true story!

Further on down the road the song, Empty Me, by American Idol alum Chris Sligh came on the radio. Hmmm ~ seems like the word 'empty' is the word of the day! Ordinarily I would view that word as negative, but after listening to the lyrics of Chris' song I have a change of heart. Maybe I have had it wrong all this time. I think of myself as a 'half full' kind of girl ~ but maybe 'half empty' is better? Read some of the lyrics I posted below ~ listen to his song ~ and let me know what do you think.

I know how I can stray and how fast my heart can change. Empty me of this selfishness inside and every vain ambition and the poison of my pride ~ Lord empty me ~ so I can be filled with you ~ every thing is a lesser thing compared to you ~ so I surrender all.

Clear Path

One of the great wonders of life is that things are never as they appear ~ always in motion ~ constantly morphing into something else. The oceans are the greatest example of the never ceasing thundering motion of the waves. I have drawn great strength and comfort from a handful of songs over the past year and a half. They have been there on the radio like a loyal friend, just when I needed them ~ audibly expressing what I am feeling. Through their steadfast consistency ~ the meaning of the songs have new meaning to me. "I will go through the valley if you want me to..." Maybe it's me that is maturing in my faith ~ in my understanding of WHY I am here on this path ~ this bumpy, dark, twisted and beautiful path through the valley ~ me and my Chiari brain tail.

Ever since I was a little girl ~ that awful day that shook me to the core ~ watching my brother get kicked in the head by a horse ~ watching his spirit leave his body ~ I knew then and there that life was precious and easily taken away. In the same breath, I knew that there was no way I could carry on without drawing strength from Jesus. I also knew that God had big plans for me ~ that He wasn't through with me yet. Throughout life ~ again and again ~ I have been through many hard times ~ struggles; however, there have been a lot of wonderful and happy moments, too! All my life I have wanted to go to Africa and do mission work ~ hopefully some day I will make it there ~ but for now ~ I am here ~ on this path.

As my surgery dates have drawn closer I have had some amazing re-connections with old friends and have made some new ones. If it weren't for my brain tail I would have never met such amazing people who have been blessed with a brain too big for their head. There is no doubt in my mind that God has been present through all of this journey thus far and will continue to walk with me. For those of you who have reached out to me, know that you are all near and dear to my heart ~ kindred souls ~ we will get through this ~ and my wish for you is that you will feel an overwhelming spiritual presence through this journey ~ a peace that passes all understanding ~ a feeling in your heart that you are not alone in this journey!

If You Want Me To ~ Ginny Owens

The pathway is broken
And the signs are unclear
And I don’t know the reason why you brought me here
But just because You love me the way that You do
I will go through the valley If You want me to

CHORUS: Now I'm not who I was When I took my first step
And I'm clinging to the promise You're not through with me yet
So if all of these trials bring me closer to You
I will go through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my own
But You never said it would be easy
You only said I'll never go alone
So when the whole world turns against me
And I'm all by myself And I can't hear
You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley
If You want me to

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!

Turn On Your Heart Light

I had my pre-surgical echocardiogram echocardiogram today to make sure that my heart can withstand the stress of two surgeries back to back. Today was not the best day for my heart to show up for an exam. Periodically I will have a day where it's hard to breathe ~ imagine breathing out of a straw. I will have chest pains, short, shallow breaths ~ these are the side effects from brain stem compression. I can't predict when I will have these symptoms, they just show up randomly.

So imagine my delight when I started experiencing these symptoms today ~ knowing that my heart was going to be scrutinized. The ultra sound tech could tell that I was struggling to breathe ~ I just hope that the echocardiogram is a 'pass-fail' test. Turn on your heart light ~

Not A Good Sign

Did I ever mention that I am strong willed????

One has to accept pain as a condition of existence. One has to court doubt and darkness as the cost of knowing. One needs a will stubborn in conflict, but apt always to the total acceptance of every consequence of living and dying. ~Morris West

I have known all along since I was introduced to my Brain Tail that everything would happen in God's perfect timing ~ I have this image of me sliding into TCI in the nick of time ~ like someone collapsing just over the finish line after running a marathon.

I have read stories about other Chiarians who have had trouble walking and I couldn't quite understand that until now. So ~ I was on the treadmill at the gym last night ~ fighting back the tears as faced the reality that I am on a steep decline. I remember only a year ago when I was able to run 6+ miles at a respectable 6 miles an hour pace. My goal was to walk for 30 minutes ~ I set the pace at a paltry 3.5 mile per hour ~ about 10 minutes into my workout I noticed that I couldn't feel my legs anymore and needed to hold onto the treadmill so I wouldn't fall off the end ~ oi! Not a good sign ~ but the good news is that my body is telling me to cool my jets until I get to TCI ~ not an easy order to follow ...

It All Comes Down to DNA

Distant ~ quiet ~ mulling things over ~ Sometimes I just need some time and space to think. The deadline for my second level appeal is coming up in a couple of weeks ~ I need to be prepared to present my case. The first time I appealed my request for out-of-network surgery, the door was slammed in my face. Thinking back ~ I am sure that the powers that be looked at my file ~ saw my request and quickly denied me. Their thoughts were ~ she needs a garden variety decompression and we have someone in-network who can do that for her. On the contrary, my case is not even in the same galaxy as the garden variety surgery! So now ~ I am digging deep within myself so that the information I present is convincing enough to get the green light to TCI.


I still remember a college professor's comments on one of my final history exams. He was completely blown away by my essays on the final and he was convinced that I was an English major. (In reality, I was probably using grandiose words to try to cover up the fact that I wasn't completely prepared for the exam!) Seriously, the man was moved to tears by my essay ~ we are talking about history here ~ not a romance novel. Anyway ~ my point is, apparently my writing can have that effect on people every now and then. So, I will attempt to 'move' the powers that be ~ to help them walk a mile in my shoes ~ to show them my point of view.


The outcome will be up to them, but I am clearly praying for nothing short of a MIRACLE! I am looking for the express train ~ the fast track to TCI. Meanwhile ~ I am in the process of getting an appointment with a geneticist so that I will have concrete, medical proof that I have Ehlers Danlos. Nothing in this process has been speedy. With that in mind, if I actually secure an appointment with this geneticist I will be lucky if I get an appointment any time soon. You see, they are scheduling appointments FOUR months out right now ~ you do the math ~ we are talking MARCH of 2008. So ~ all along, everything has been leading up to focus on the building blocks of life ~ DNA. I may find out more about myself from a geneticist that I ever wanted to know.

Up To The Mountain

Today is the day ~ driving into work this morning the streets were shrouded by an early morning fog. The imagery mirrors my path ~ veiled in fog with street lamps along the way to keep me on the path. At this point, I don't know quite what to expect as I prepare to meet surgeon #5 ~ I just want him to take action ~ hear me out ~ schedule surgery ~ let's get the show on the road already!

My sister made me a birthday CD mix last week ~ this song instantly brought tears to my eyes ~ it echoes my journey ~ plodding up the mountain ~ the journey is hard ~ but with perseverance I will reap the benefits of the breathtaking view on the summit. It reminds me that I am not alone ~ some days are harder than others ~ but my friends and family give me the strength and courage to keep going. I first heard this song when Kelly Clarkson sang it ~ both versions are beautiful ~

Up To The Mountain ~ Patty Griffin

I went up to the mountain
Because you asked me to
Up over the clouds
Where the sky was blue
I could see all around me
Every, Everywhere
I could see all around me
Everywhere

Sometimes I feel like
I've never been nothing but tired
And I'll be working
Till the day I expire
Sometimes I lay down
No more can I do
But then I go on again
Because you asked me to

Some days I look down
Afraid, afraid I will fall
And though the sun shines
I see nothing at all
Then I hear your sweet voice
Come and then go
Telling me softly
You love me so

Don't Blink

I heard this new Kenny Chesney song today ~ really resonates with me and iterates what I have been thinking lately ~ Don't Blink ~

Everything in life has taken on a new and different meaning to me. This summer we took a family portrait for our church directory. During the family photo shoot I found myself wanting the photographer to hurry up ~ I could feel the water works welling up and I didn't know how long I could keep them back. Why, you ask, would taking a family photo make me cry? I'll tell you why ~ because in my mind I was thinking that this could be the last photo we would take together. Brain surgery ~ it's a risky endeavor ~ this time next year things will be very different!

That might have come off a little morbid ~ let me clarify ~ I know from lots of experience that there are certain events in life that forever change who you are ~ brain surgery is going to rock my world ~ there's no getting around that! Things are going to be different ~ but I am praying for changes for the good ~ a new lease on life ~ improvement in quality of life and renewal of strength.

Higher Ways

Today at church the Bible passage written below spoke loudly and gently reminded of the truth in the Lord's words ~ His ways are higher than mine ~ he has perspective that I will never have ~ I have to trust that He has plans for me ~ Lean by faith and not sight ~ So hard for a mere mortal to digest ~ and like a child, I need the constant reminder from one who is much wiser than me.

Isaiah 55:8-9

8 "For my thoughts are not your thoughts,
neither are your ways my ways,"
declares the LORD.

9 "As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.

Word of God Speak...

So Small

My prayer for today ~ Lord, please turn this mountain that I have been climbing into a grain of sand ~

So Small ~ Carrie Underwood

Yeah, Yeah

What you got if you ain't got love
The kind that you just want to give away
It's ok to open up
Go ahead and let the light shine through
I know it's hard on a rainy day
You wanna shut the world out and just be left alone
But don't run out on your faith

Cause sometimes that mountain you've been climbing
Is just a grain of sand
And what you've been out there searching for forever
Is in your hands
And when you figure out love is all that matters after all
It sure makes everything else seem
So small

It's so easy to get lost inside
A problem that seems so big at the time
It's like a river that's so wide it swallows you whole
While you're sitting around thinking about what you can't change

And worrying about all the wrong things
Time's flying by, moving so fast
You better make it count cause you can't get it back
Sometimes that mountain you've been climbing
Is just a grain of sand
And what you've been out there searching for forever
Is in your hands
Oh, and when you figure out love is all that matters after all
It sure makes everything else seem
So small, yeah yeah yeah yeah yeah

Sometimes that mountain you've been climbing
Is just a grain of sand
And what you've out there searching for forever
Is in your hands
And then you figure out love is all that matters after all
It sure makes everything else
Oh, it sure makes everything else seem
So small

Yeah, yeah

Leap of Faith

I have a blog buddy who is taking a leap of faith ~ although paperwork and red tape are standing in her way of surgery ~ she's on her way to TCI ~ anyway. I admire her leap of faith ~ incredible strength ~ leaning in faith. I pray that she gets the treatment she needs and that all of the road blocks disappear.

I can't help but see Indiana Jones when I hear the term "Leap of Faith" ~ don't you agree?!?

Somewhere In the Middle

Do you ever feel like you are stuck in the middle ~ between the now and the not yet? I am there ~ waiting for a surge of forces larger than myself to push me into the next phase of my journey. How long can I bravely walk through the shadow of the valley ~ my strength ~ both physical and emotional ~ are waning.

I know ~ I shouldn't complain ~ I just got some good feedback on Friday ~ but for me ~ it's not enough! I want concrete letters in my hand ~ definite surgery dates. Enough already with the drama of the insurance dance ~ once again I am beginning to think that I am making all of this up and it's all in my head. Does the fact that I need a seat belt for my desk chair today so that I don't fall out of it indicate that I'm not 100%?

Casting Crowns released their newest CD today ~ The Alter and the Door. I have already found a new song that speaks right to me ~ Somewhere In The Middle ~ "Deep water faith in the shallow end..." ~ what an image ~ I can do deep water ~ let's go!

Somewhere In The Middle ~ Casting Crowns

Somewhere between the hot and the cold
Somewhere between the new and the old
Somewhere between who I am and who I used to be
Somewhere in the middle you'll find me

Somewhere between the wrong and the right
Somewhere between the darkness and the light
Somewhere between who I was and who you're making me
Somewhere in the middle you'll find me

Just how close can I get, Lord, to my surrender
Cause I'm losing all control

Fearless Warriors in a picket fence
Reckless abandon wrapped in common sense
Deep-water faith in the shallow end
We are caught in the middle
With eyes wide open to the differences
The God we want and the God who is
But will we trade our dreams for his
Or are we caught in the middle
Are we caught in the middle

Somewhere between my heart and my hands
Somewhere between my faith and my plans
Somewhere between the safety of the boat and the crashing waves
Somewhere between a whisper and the Lord
Somewhere between the altar and the door
Somewhere between contented peace and always wanting more

Somewhere in the middle you'll find me

Just how close can I get, Lord, to my surrender
Cause I'm losing all control

Fearless Warriors in a picket fence
Reckless abandon wrapped in common sense
Deep-water faith in the shallow end
We are caught in the middle
With eyes wide open to the differences
The God we want and the God who is
But will we trade our dreams for His
Or are we caught in the middle

Fearless Warriors in a picket fence
Reckless abandon wrapped in common sense
Deep-water faith in the shallow end
We are caught in the middle
With eyes wide open to the differences
The God we want and the God who is
But will we trade our dreams for His
Or are we caught in the middle
Are we caught in the middle

Lord I feel you in this place
And I know your by my side
Loving me even on these nights
When I am caught in the the middle
Caught in the middle

Brain In Training

I have been given pretty strict orders from my neuro surgeon to hang up my running shoes ~ but of course, anyone who knows me knows that it's not a good idea to tell me that I can't do something. So I have listened to my docs advice ~ OK ~ I hear you ~ put aside any dreams of competing in a marathon or triathlon any time soon ~ I can do that. But cease running altogether ~ seriously ~ not gonna happen.

I have felt pretty wrotten this week ~ most of the time I have felt much like a drunk sailor with a killer headache on rough seas ~ it's not a pretty picture! The turkeys have really getting me down ~ so when I had a small burst of energy tonight, I thought I would try out my sea legs on land and try to squeak out a run. I haven't been running in a couple of weeks and the last time I could only muster a mere mile at a snails pace.

Tonight, I set my iPod to my favorite running mix ~ cue the Training Montage from Rocky IV ~ and started out on my run. For the moment, I felt happy that my body wasn't completely failing me. Just a year ago I could occasionally run 6 miles ~ today, I would settle for a slow 5K. Having a positive attitude and pushing myself beyond my limits has always been an internal mantra for me. I'm no Wonderwoman ~ but pushing through the pain and fatigue gives me great strength. I need to give my brain more growth opportunities so that it remembers how to be a survivor. I will need those skills finely tuned so that my recovery from surgery is speedy.

Tomorrow ~ I will probably pay for shaking my brain up and down for half an hour ~ but the training exercise was necessary and a little bit of my sanity is once more restored.

FEAR

FEAR is real ~ FEAR can be paralyzing or give you the strength to do the impossible. Rosa Parks was quoted as saying, "I have learned over the years that when one's mind is made up, this diminishes fear; knowing what must be done does away with fear." I totally agree with her statement and can reflect that my initial fear has diminished now that I know what must be done.

Here I go ~ I am going to fly my Lord of the Rings (LOTR) freak flag high, again, brace yourself. Mount Doom ~ it's an ominous, scary place that reeks of fear. I could cower, shield my eyes, look away ~ but that's not me ~ I'm headed toward the very place that others run from.

Getting there is hard ~ the air is oppressive ~ it's going to get very uncomfortable during my journey ~ but it's a means to an end. My brain tail is broken ~ the longer I hold onto it the worse I feel. I want to throw it into the fire ~ be rid of it! This is my journey to take ~ my burden to bear. It feels like I am moving at a snails pace just getting there ~ but I am still in motion ~ still standing ~ still breathing.

Frodo: "I cannot do this alone."

[Galadriel turns back.]

Galadriel: "You are a Ring bearer, Frodo. To bear a Ring of power is to be alone."

[Galadriel lifts her hand up. A ring adorns her finger.]

Galadriel: "This is Nenya, the Ring of Adamant, and I am its Keeper. This task was appointed to you, and if you do not find a way, no one will."

Frodo: "Then I know what I must do. It's just… I'm afraid to do it."

[Galadriel bends down to meet him at eye level.]

Galadriel: "Even the smallest person can change the course of the future."

Psalm 27:1 [ Of David. ] The LORD is my light and my salvation— whom shall I fear? The LORD is the stronghold of my life— of whom shall I be afraid?

Psalm 112:7 He will have no fear of bad news; his heart is steadfast, trusting in the LORD.

Jeremiah 29:11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Rising Action

I can definitively say that I have arrived at the rising action point in my Chiari journey. After waiting for a reply from the local neuro-surgeon ~ it only took him five weeks to draft a letter reeking of cowardice and ignorance ~ I can check off another task off my list.

So ~ what next??? I have followed orders from the insurance company to the letter, including seeing idiot local surgeon so that he could completely discount my condition and requested tethered cord (TC) surgery. Not only has he refused to do the TC surgery, he has so kindly offered to the 'rather routine' (his words no mine) decompression for me. How kind ~ what a nice guy ~ of course he didn't even do an examination when I saw him, unless you consider following his finger back and forth and testing the reflexes on my knees an accurate examination. Does he thinks he is doing ME a favor?!?

If there is a silver lining in here ~ the one good thing is that come hell or high water, the village idiot surgeon won't lay one hand on me. I would rather perform my own brain surgery!!! So ~ I have to let the anger and disbelief die down a bit ~ regroup. I will run to the shelter of my 2nd surgeon next week ~ whom I absolutely adore ~ and have him write my second required recommendation letter for decompression at TCI. Maybe I will get the decompression before the TC ~ at this point ~ I just want to get a surgery date on the books. At this rate, the earliest date would be in November.

Just A Little Doolittle

If you know what you are looking for, you can see the images, clearly. But to the untrained eye, if I told you that I saw horses in this picture you would think I was a kook! My medical situation has morphed into an enigma ~ some things just can't be explained and/or understood by anyone but an expert. Take for example the ever elusive Occult Tight Filum Terminale ~ Apparently, I have baffled my latest neuro-surgeon. Today, I called to get an update on his findings from his extensive scrutiny of my MRI films (he's had 4 weeks to mull over the information). His medical assistant told me that he had just drafted a letter to send to me.

A letter??? So ~ he's going to dismiss me as a patient due to his expertise ~ he finds no tethered cord and no need for surgery. I don't have that in writing, yet, but I am pretty sure that's the verdict. So that means that I have a week to plot out my next steps and plan of attack. I sense that an appeal is just around the next bend in the road.