2nd ASAP Support Group Meeting May 3, 2014

New Member, LaTonya and I.

New Member, Taren and I.  Taren becomes a Zipperhead May 13, 2014.
(Not sure why this captured my cell phone info)

Our fearless leader (and my sweet friend) Simone..with my birthday cake!
Yes they did the very sweet..and embarrassing..singing thing.
Very special..Thanks Guys!

Five new members this meeting! 

Vonda welcoming new member, Cherrilynn (hope I spelled that correctly)

So much to share and learn in such a brief time!

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Our Brain Crunch Brunch  Group
and a quick thank you to my husband, Bob, not pictured because he was the photographer!

Our second meeting was yesterday.  I was thankful to be able to go.  I will admit, I was also glad to get back home and into bed, where I stayed the rest of the afternoon and evening.
There is so much to learn from the experiences of others. We all have something important to share.
I left this meeting with the same warm feeling as when I left the first.
No, not with a fever.
I left with the feeling that something remarkable just happened.
I hope everyone felt that way.
I don't know how to describe the feeling of looking into someone else's eyes and seeing love like this.
It's different than romantic love, or parental love.
There is an empathy, an understanding, a bond.

If you live in an area with no support group, I urge you to start your own.  I know there are groups online, but there is such a difference when you are face to face with actual, real human beings.
The isolation of this condition can be horrific.
I feel very alone most all the time.
Reach out to others and make a difference.
I'm so glad I said, "Yes!" when Simone asked if I'd join her in this.
Someone is out there waiting for you to make the first bold move.
Do it- You will be glad you did!

My Imperfect List of Top 10 Things to Not Do After Brain Surgery

Disclaimer:  These are the things that stand out most to me. Use your own judgment and always discuss with your doctor when in question.  THIS IS NOT MEDICAL ADVICE.

My Top 10 Things to NOT Do After Brain Surgery:

10.  Don't try using a WEDGE pillow- the people that  bragged on these things should be strung up- they are miserably uncomfortable.  Use pillows you love and stack them. You will not be comfortable laying completely flat for at least 12 months because this increases the pressurized feeling in your head. I was determined the people that recommended this expensive sleeping apparatus knew what they were talking about and wrestled with it for a few weeks before actually returning it to Bed Bath and Beyond (they are about $59).
9.   Don't let your narcotics dictate your food choices.  To me opiates whisper these two things in my ear- "Cheez-Its" "Reese's Peanut Butter Cups". Have a plan beforehand.  Whomever your caregiver is..be firm.  They will give you whatever you say you want to eat when you have a fresh zipper in the back of your head...This is FACT.  Junk food on an already compromised adrenal system will result in a weight management nightmare.
8.   Don't go home without a prescription for nausea medication and muscle relaxers.  Oddly enough, the docs are good at throwing out opiates but tend to forget these other two very important pharmaceutical jewels.  Ask for sublingual Zofran-it works quickest-  and your favorite muscle relaxer. If you don't have a favorite, borrow mine: Flexeril 10 mg.  Otherwise when you throw up..and you will throw up, (a combo of dizziness and nausea from the pain meds..) you will have painful spasms in your neck and shoulders (guess how I know?!)..head these off at the pass..ASK FOR THE DRUGS!
7.  Don't skip taking your stool softeners.   No one likes to talk about poo.  Poo is not a popular topic.
You won't even think of poo because you will be glad you don't have to get out of bed to go.  But listen to me on this..Day 5 or 6 post op, it will cross your mind, or the doctor will ask you when he calls you post op.  Then, your focus will become poo..or the lack thereof.  Everyone in the hour will talk about your poo. You will have poo peer pressure. Straining will cause increased head pressure, pain and spasms.  Magnesium Citrate is your friend.  Buy some preoperatively and put it in the fridge (you can find it at Walgreens or CVS, lemon-lime or grape are the best flavors...guess how I know). Go ahead, get some Miralax and a stool softener (ask your pharmacist what works best).  You will thank me later, I promise.
6.  Don't wash your hair with baby shampoo.  I did this at the recommendation of a well-meaning person in a FB group.  The docs don't really specify a shampoo..and this is harsh on your hair. Your hair will change texture a bit as it is, no need to help it turn into straw.  Dry shampoos work well for a clean feeling (which is short-lived), but once you start shampooing, use conditioning shampoo. My hair took over a year to get back to it's original texture with this first surgery (I used Burt's Bees Baby Shampoo the first go 'round).  This time I used Giovanni Organic Shampoo and Conditioner..and Kerastase Nectar Moisturizing cream..much better).
5.  Don't look at your incision immediately upon bandage removal.  If you've seen Frankenstein (or my post-op photos)- you can bet you will look just as horrible.  You will break down and cry like a baby even though all this time you've been looking at the photos of others and knowing how it will look.  A day or two later is better to look, after exposure to the air, the inflammation is decreased and it doesn't look as frightening.
4.  Don't  go without lip balm on your lips for any length of time the first 2-3 weeks. Your lips will crack, peel and bleed.  Drink, Drink, Drink water. Your body needs to stay hydrated to keep your lips, skin healthy during this physically traumatic time.
3.  Don't under hydrate prior to and after surgery. Drink, Drink, Drink water prior to surgery (NOT DAY OF), you will be told to not eat or drink after midnight the night before..follow that rule, however, prior to that time, hydrate as much as possible.  You will wake up with multiple IV's, probably and arterial line and possibly a central line.  I woke up with a 14 gauge (that's a very large gauge) IV in my foot the first time because I was dehydrated.  I am usually an easy stick, but I guess being anxious I didn't think to drink.  So-you remember: THINK TO DRINK!
2.  Don't tease the poor nurse who is starting your IV before surgery or re-sticking you after surgery.  Being a nurse myself, I teased my nurse (1st surgery). I told her I am an easy stick and if she couldn't get an IV started on me, she needed a new profession.  I was laughing, of course.... until she couldn't get an IV started and had to stick me multiple times and ask for assistance.  I woke up looking like I had wrestled with a porcupine.  I had the 14 gauge in my foot, an IV in each hand, one in my forearm and an art. line. The ICU nurse told me they had lots of trouble getting patent IV's on me.  So with surgery #2, I gulped water down the entire week before and I DIDN'T TEASE THE NURSE.  I'm not sure which worked for me..but I had only two regular IV's.. a 20 gauge and and 18 gauge and an arterial line when I woke up. They were able to discontinue my central line in the OR.
1.   Don't talk your mom..or anyone  else into coloring your hair right after surgery.  Around day 7 or post-op (second surgery), my hair color looked horrible to me.  I couldn't just be happy being alive. I wanted to look alive. Big dark circles were under my eyes, bruises on my temples, swollen, painful spots from the head fixator stuck out of my hairline, my hands, arms and neck were bruised from the IV's and central line, my lips were cracked and my nails were paper thin from me removing the Shellac from them a few days before surgery. For some reason, I just got fixated on my hair.  l sent my mom to Walgreens for necessities, magnesium citrate, pre-packaged enemas (just in case) and Garnier Nutrisse Haircolor: Darkest Brown.  What do you think we did first?  Drink the mag citrate?..No Way! Once glance at the clock told us Bob wouldn't be home from work for another 45 minutes. So, we used an occlusive dressing, covered my incision and Mom colored my hair.  I sat still for 25 minutes, holding my head up on my own while the color set in. It never occurred to me that it would hurt like the dickens to rinse out. See, the nerve endings around the hair follicles are so super sore, even today, 17 days post op, my head feels raw. I still only gingerly brush it. So, when my mom started rinsing out the color...two things happened. 1: I had spasms when I bent my head over to rinse it, so I was in massive internal pain and 2: I couldn't bear her rubbing my scalp because it was so sore, so she didn't. Fast forward to few days later, I keep noticing my fingernails are dirty.  I'm constantly washing my hands and complaining until I realized, "Hey, Einstein, you keep scratching your head, which is covered in hair color still...that's not dirt..it's Garnier Nutrisse Darkest Brown!"   Yes, I admit it..I did that, all on my own! So please, color your hair a week or so prior to surgery and save yourself some pain and embarrassment!

SO that's my list..use it for what you will.   Other, more informative lists can be found on various FB Chiari group pages and on Chiarisupport.org (the Ben's Friend's site).

Happy Birthday to ME! Happy Birthday to ME! Happy Birthday Dear ME-EE! Happy Birthday to MEEEE!

As you may notice by the way I beautifully sang the title of this blog...I'm feeling better.

No, today is NOT my birthday. 

By now, everyone knows I had my second brain surgery only sixteen short days ago on my birthday (April 16-just in case you want to make a note to send me something FABULOUS next year- I'll pause briefly for you to make that note on your calendar.)

I literally waited about forty-five seconds for you to make the notation. 

I'm singing because yesterday was a good day. 

Yes, I spent eight long hours in our bumpity-bump truck with my head totally uncomfortable the entire time..but two...no, make it three very important things happened yesterday. 

Again..in order of importance: 

1.  Bob, Lindsey and I got to have lunch with Katrina and Misty!  

2.  I got a BIRTHDAY CAKE!

3.  My neuro report card was pretty much an A+ and I'm stitch-free!

Did I mention I got a BIRTHDAY CAKE?

Bob and I with my surprise cake..as you may notice- I am only 8 years old! Thank goodness they didn't put 40+ candles on this cake!

Katrina and I in the front, Misty in the back/middle..My two precious friends.

Bob, Lindsey and I. I'm not quite sure what or who they are looking at..but you get the idea..it was a fun lunch!

The real reason I got  a cake is because almost every day I have said, "Wow, I really do want a piece of birthday cake!"  So Lindsey and Bob  covertly got with Katrina and Misty--and VOILA!  CAKE!
(They all knew I'd never shut up about it otherwise!)

SO! After lunch outside of Houston, we trucked on in to the Medical Center and I saw Dr. Kim.
He was very pleased with my progress so far.  We are all very pleased.
Yes, I've still got a little bit of pain..as a matter of fact, I feel like my head is raw on one side.
It's pretty uncomfortable, but I have dealt with much worse, so no worries.
My discussion with Dr. Kim resulted in the following:
He says I'm complicated... that's not a revelation..but I was surprised to know he thinks I'm a complicated case.  You see, both Chiari Malformation and Arachnoid Cysts can be congenital-both can be connected to Ehlers-Danlos Syndrome...so it's kind of like a what-came-first-the-chicken-or-the-egg thing  (as a side bar-I believe God created the chicken first..but not sure what HE did with the Chiari-Cyst thing).
If I had syringomyelia like many Chiarians, then that would be more complex, but not complicated.
Complicated could easily be my middle name.
Anyway-
He said if I go a year and a half with no recurrence of symptoms, this was likely a permanent fix.
He said if I go three-four years, we can be sure of it.
He further stated, if symptoms recur, I will have to have a cysto-peritoneal shunt, as opposed to the internal shunts I have now.  The little ones I have now are contained basically in my brain, the C-P  would go from my brain, down through my body into my peritoneum--basically the abdominal cavity.
He is very hopeful this is a fix.
I'm setting my sights on November 2015.  If I can get there with minimal issues, I'll feel like this was successful.

Already, I feel more clear headed, my speech comes more freely, vision has improved and I have improved feeling in my left hand, leg and left side of my face. My hearing is still less than optimal, however, he said that can take awhile to improve, so I'm practicing patience.

While typing this I've experienced two of those horribly painful things I call "brain spasms".  Literally, I feel as though my brain squeezes into a tight ball and it  hurts  so  badly.  I know my pain meds don't help it..but I'm going to take some anyway, get  away from the brightness of this laptop and rest awhile.

I will report more over the next few days..Stay tuned..I'm developing a TOP 10 THINGS TO NOT DO AFTER BRAIN SURGERY list..and how found out they were things to NOT DO!  I will post it soon.

Thank you again for your prayers, support and notes of encouragement! 

"Two Weeks Post-op And All's Well!"

I always thought the job of Town Cryer would be an awesome job. 

I mean, it's almost like being paid to gossip. 

Having all of the inside info on the state of things..whether things are "all well" or "a real x@#$%&! mess".. Well, anyway, I thought it would be a cool job to have. 

I suppose I've become my own personal "CRYER". 

Don't get too fidgety, I'm not doing any real crying-at least not this afternoon.

This morning-well, that was a different story, but not one we are diving into for now. 

Nonetheless, I am my own personal cryer..it's up to me to declare the state of things...my things.

So here goes...

I'm two weeks post-op today (and all's well!). 

Tomorrow, Bob, Lindsey and I will head down to Houston for (listed in order of importance):

1. Lunch with Katrina and Misty.

2. Post op appt with Dr. Kim to get my stitches out hear what he has to say about surgery.

So far, I've had only brief periods of time alone since surgery..an hour or so here and there. 

Thanks to my Daughter, Husband, Mom and Daughter-In-Love...I've been pretty well-handled. 

I'm not at all looking forward to starting my real days at home alone, which start on Friday. 

However, I'm pleased to report that I think I'm ready. 

I feel so much better today than I did two weeks after my first surgery. 

My pain has calmed way down. My eyes are better for longer periods.

My neck mobility is almost what it was before this surgery. 

Besides being tired, nauseated more than usual and having no change in hearing loss- I am very pleased. 

I know I owe a great debt to the many of you that have prayed for me. 

I am truly in your debt and am so thankful for you. 

Prayer is something I don't take lightly.

My mom asked me while she was here if I ever wonder if all of the people that say, "I'm praying for you" truly are..I said, "No, I don't"  I just make sure when I say those words, "Praying for you" that I stop right that minute and do just that. (Empty words never helped anyone) 

Guess what I found out, my mom does the same thing.  I've known her my whole life and never knew we had this in common.

I know there are times when my writing is sad, dark, selfish-even down right pathetic. 

I would apologize, but I don't want to. 

I'm real. I'm a realist. 

On any given day I can go from dark and twisty to bright and shiny within seconds. 

 I don't trust people that are happy all the time-It's just not natural. 

Therefore, I  decided to remove the mask I sometimes default into wearing and just say it like it is. 

Love me-hate me, Leave me or keep me..

Whatever you decide, at least its a decision based on truth. 

Because YOU my friend know me inside and out. 

What you read is what you get. 

No more, no less. 

SO.. back to being my own personal Cryer.  

I'm pleased with my progress. I expect to return to Dallas tomorrow evening with no stitches in my head, a good surgical report to my credit and a warm place in my heart from spending the day with my husband, daughter-in-love and seeing my two sweet friends. 

The trip will be long (8 hrs of driving round trip), bumpy (we are taking my husband's bumpy truck because we can't all three squeeze into the two seats of our other car) and most likely painful (due to a combo of bumps and sunshine), so if you can spare a little more prayer-

We could use a little bit more for safe, painless, nausea-free travel and a good check-up. 

Thanks so much- I will try to post an update on Friday.

No One Quits

How did I get to ten days post op?

The entire surgical process is fading into my memory. 

Mercifully, God has hidden some of the events of the past several days from me. 

Mercifully, He has also allowed several to remain. 

Consistently across the span of the last few weeks, I've sunken into the depths of despair every day. 

Not really a "Why Me?" pity party...

More of a "this is to big for me to carry", hopeless, helpless feeling. 

The feeling of wanting to share this burden of sorrow, yet wanting to also hide it from the world. 

Like I told Bob yesterday, "I just want to lay here and cry for no specific reason"

Not because of the pain, or even the knowledge that this will likely be a lifelong battle, that very few people can state they are "cured" (and of those who do--it rarely lasts very long). 

Crying releases something..like a dam bursting  under too much pressure. 

Crying somehow validates that I can't carry this  burden alone. 

Crying gives me the permission to not be "brave" or "strong" or to wear that ridiculous mask of happiness that I feel is expected from me. 

Crying is a gift.

Last time I had surgery, in January 2013..I blogged more frequently and earlier after surgery. 

I wrote every thought, every ache, pain, wound, realization and "Ah ha!" moment.

Either here or on my CaringBridge site...many people followed as I chronicled the event. I had so much to share, so much to learn, so much to give. 

This time has been so very different. 

Yes, my eyes have had difficulty with electronics so that kept the writing at bay. 

At the same time, I knew I had nothing to really share.

I needed to soak it all in and regurgitate it in a way that really spoke from my heart. 

Not just a timeline of events and milestones. 

I wanted to share my heart in an unmistakable way, in a way that moves people to action. 

As words evolve from my keystrokes, I wonder if I can do justice to all I feel. 

My blogging seems redundant and pointless. 

I'm living in Blah-ville.  

Tears are rolling down my cheeks from some indescribable grief. 

I ache.

I'm tired of this. 

I'm tired of seeing the purple flame on Facebook (signifies the death of a person with Chiari), 

I tell some friends/family members..another one of us passed away. 

They look at me with pity and say nothing. 

My phone rings--I look at it. I recognize the name.  They are going to ask how I feel. 

I let it go to voice mail.  Talking is difficult and talking without crying is impossible.

More tears roll down my face. 

My head is throbbing now. Too much crying. 

Time passes too slowly. 

I have foreign objects in my brain now. Permanent foreign objects. 

I'm the brain surgery girl. 

Overheard on the elevator the other day:  "Why do you think she has that bandage on her head? Poor thing! How sad!" 

Who would've ever thought it?  

I listen to the voice mail from the caller I avoided. 

They say they hope I'm feeling better, that they are praying for me and sorry for not calling sooner-but they've had their own issues to deal with. 

Really? Who says that? 

I've had my own issues too--like having my skull cracked open.

Bitterness slips out of my mouth-as soon as I say it, I admonish myself for being so self-centered. 

This is MY world--not theirs.  Everyone has their issues. 

Funny how mine are more important to me and I'm okay with that..but I resent it when others behave in the same fashion- placing priority on their issues. 

How can they act normal when I'm suffering over here?  Can't they see, hear and feel my suffering?

Now, not only do I have foreign objects in my head, but I'm selfish too. 

I slip down a few rungs on the ladder of despair and cry more. 

This is getting out of hand...and my head hurts like hell. 

I silently pray for forgiveness for my self-centeredness, for using profanity both silently and audibly, 

for not being more grateful and I ask for God's help with the bitterness, the sadness and the disappointment with myself and others.  

I turn off the light and try to nap. There is no comfortable way to rest my head.  it feels like one big, throbbing bruise.  So, I cry some more. 

Hot tears on my cheeks make my face feel tight..I hear my own voice in my head..

"No one quits--No one quits..Not today!"

I know my writing is usually a bit more informative, more fact related, more educational...and I'm sure I will get back to that. For now, this is my outlet. As my body physically heals, 

I also need emotional and spiritual healing. 

I feel my life has once again been spared.  I am seeking purpose in all of this. 

If you have been where I am, I hope it helps for you to know you are not alone. 

Some of our Chiari sisters have taken their own lives because of the pain, isolation, feeling they were a burden.  We all have these thoughts cross our minds.  We are all subject to despair, sadness and shame.   I hope you find refuge in my writing and I hope on your darkest days you are able to look in the mirror, wipe aways your tears, pull yourself together and say, "No one quits--No one quits..Not today!"

Freezing Up and Moving Forward

Have you ever felt frozen?
I don't mean like outside waiting on the local Christmas parade, drinking hot chocolate with numb nose, fingers and feet-
I mean-Frozen.
Frozen in time...in space..in a moment.
Still able to move, to act, to function-
But frozen inside.
When I was younger I had vivid dreams of Indian tribes with strange death rituals.  I have no idea why I had these dreams..I've never been a huge Indian buff, don't think I ever painted my face or did a rain dance...Anyway, in my dreams death was always the same...the soul stayed trapped inside the immobile body. Complete awareness of surroundings was present, yet no sound could be uttered or movement made. Trapped.  I remember wrestling myself awake from these dreams, for fear I was actually among the deceased indians. I remember forcing screams from my mouth that apparently only came out as a whimper. I was frozen.
And I was ALWAYS happily relieved to awaken into the world of living, breathing, moving, talking humans.
Later I was told some people have this same trance-like dream state. Some call them night terrors . 
I call them...CREEPY.

For the past few days I've had quite the opposite phenomena going on.
Perhaps these are day terrors.
Or life terrors?
Or Chiari/Arachnoid Cyst/I-can't-believe-I'm-having-another-surgery terrors.
I feel frozen.
But this time, I'm frozen inside.
I'm moving, talking, laughing, writing, smiling, crying, texting on the outside and completely paralytic on the inside.

Currently, I'm sitting on my bed with two calendars open, three notepads open with various to do lists in progress.  Call the vet to board the dogs, finish the taxes, finish my daughter's FAFSA, pack for Houston, call the hospital, make a hotel reservation, renew my nursing license..and this list goes on and on.

But I can't get going.  I do one thing..then I sit and stare.
Then I go look in the mirror and mouth to myself.. "SNAP OUT OF IT"
I go back, I look at the list..the one item I accomplished isn't even on the blasted list..so-I write it down, then mark it off (you know you do the same thing..so don't judge me).
Then-I read over the list and look for the most appealing task. 
And     my    mind     goes      completely         blank.

Why am I telling you this?
Here's the part where I remind you that you chose to read my blog...and I make no apologies for how I choose to process my life these days.
My best guess on how to make any progress this week is to just spit out whatever I am feeling so I can move on.
So in an effort to somewhat sanely "snap out of it"..I'm going to to take thirty seconds to type/ramble the uncontrollable stream of thoughts going through my pressurized brain:

What if I don't wake up from surgery? What if I do wake up? What if this doesn't work? What if it does work? The dogs need a bath. Who will pick up the dogs? What if I can't work again for six months? We are out of blueberries. What if my business doesn't grow? I've got to finish the taxes. I hate taxes. I hate being alone in Dallas with no close friends. Do I have any close friends? if so, where are they? They are going to cut my hair again. At the end of the day does anyone else really care? Do I care if they care? Am I a bad person? Am I crazy? Why is Bob vacuuming? How can he vacuum while I'm dying inside? Putting this hair clip in was a huge mistake. Why are we out of blueberries?
 Okay-time's up.

Actually I feel better, sharper..not as fuzzy and abstract. I owe a debt of thanks to the writing workshop I attended in Petaluma, CA this January that told me about that exercise. Can't believe I didn't think of using it before.  I just created what Marie Forleo calls "mental white space".  It's lovely here in peaceville. 

Now I can get down to the real business of the day.

Okay. Nine days and counting.

If you are confused by the NINE days, don't think the stress has affected my mathematical skills.  Surgery has been moved up a day to April 16th. 
Yes- for those of you that know me pretty well.
THAT IS MY BIRTHDAY!
For the love of buttercream icing! Could this become any more tragic?!

I must admit when the nurse called and changed the date. I felt this ominous dread come over me.  I've shaken that off and am looking at it now as the past 45 years end that day and the next 45 begin.  The first 45 were always hindered by my limited brain function..just imagine what I can do with the next 45..with my brain firing freely.  Watch out world! Here I come!

(aren't you loving the way my attitude has shifted with all of this extra mental white space..)

Now a little recap of our weekend.  We attended the 1st ever ASAP (American Syringomyelia and Chiari Alliance Project) DFW support group meeting..which I co-hosted with my new friend, Simone.  We had a great turn out. How nice to meet others who deal with the same issues as I! We had a great time meeting these sweet people, hearing their stories, swapping doctor info, medication info, treatments, etc.  Each of us brought something unique to the table, however, we all shared the same Chiari thread.  I came home from the meeting with the worse headache in weeks, climbed into bed and was actually in bed for about 14 hours.  When I woke up the next morning-I was ashamed of being so pathetic.  Who stays in bed for 14 hours with a headache?  Then we packed up our things and went down to Waco for lunch with friends, to check on our house and to see our sweet grandson. 

Sometime during the drive, Bob and I reflected on the ASAP meeting.  I made a stark realization.  I was the only Chiari kid there that doesn't take scheduled medication.  THE ONLY ONE!  I take PRN (that's nurse for: as needed) pain meds and muscle relaxers-but that is IT! I take a few supplements that I now believe are the reason I don't take regularly scheduled medications. I take D3, B-12, Juice Plus and Protandim. I rarely mention these supplements, mainly because I don't want to sound salesy...because this blog is not about my business or my income..but I believe these are key factors in how my cells are functioning. I feel like I'm hoarding this knowledge and that I should be helping people more and worrying about sounding salesy or preachy less.  So there it is....I like to take the natural course of action whenever possible.  I wish there were a natural choice for hydrocodone..because taking white willow bark just doesn't do the trick.

At the core of who I am-I just want to help others.  I do write this blog for myself-but I share it with you FOR you. I share it because people tell me it helps them personally, it helps them relate to their spouse or their children. I keep writing because I have to have a voice. I want you to have a voice. I don't want to be alone in this crazy fight within.  Those of you that comment and email  keep me writing..you are invaluable to me.

For many years, I was voiceless. I was ashamed of my health. I was told what a burden my health (mainly health expenses) was to others. I was called lazy and stupid.  I know that inside...I'm not lazy. I'm not stupid.  I know that it's okay to be frozen for a little while, to whine a bit and be afraid. I also know that it takes strength to say scary things out loud and to move forward even if what lies ahead is unfathomable.  

So I'll keep rambling, writing, freezing, making mental white space and moving forward.


Final thoughts for the morning from Season 5 of Grey's Anatomy for my dark and twisty friends--

"If there's a crisis, you don't freeze, you move forward. You get the rest of us to move forward. Because you've seen worse. You've survived worse, and you know we'll survive too. You say you're all dark and twisty. It's not a flaw, it's a strength. It makes you who you are."

Read more: http://www.tvfanatic.com/quotes/shows/greys-anatomy/episodes/elevator-love-letter/#ixzz2yDnRbfjc

Dr. Kim Visit Results

One of my favorite Grey's Anatomy quotes on an episode that briefly mentions Chiari Malformation: 

  

Now, I'm not saying that I'm not going to get better. I'm not giving up hope or throwing in the towel. 

Anyone that truly knows me can attest to the FACT that I am a research hound. 

When it comes to medical information, I have to be fully informed. I have to be prepared for every doctor's visit, every medication, every procedure. No matter how outlandish it may seem, if I find it on a list of symptoms that even remotely relates to something I, or anyone I love, experience, I'm going to be in the know. I detest being caught off guard. 

I like to excel under pressure, never be at a loss for words (or questions) and never, under any circumstances do I let a physician catch me off my game. 

Well, never --until this past week. 

I had an appointment with my neurosurgeon.  I fully expected a brief visit, focused on the options for shunt placement.  I had studied shunts, VP, LP, CP-anti-siphoning devices, 

This is what I expected:  A burr hole ( just what it sounds like) in the skull, incisions behind the ear, incision somewhere in the abdomen.

THIS I was prepared for.  I had my questions ready. What about shunt malfunctions? Shunt infections? Clogged shunts? Shunt revisions? 

Outpatient surgery, right? Easy breezy. 

Not that I was happy with this option, but at least I was prepared. 

Dr. Kim had other plans. First, He and I sat together and took measurements of my arachnoid cyst. Not only has it refilled, but it is actually larger than it was before surgery last year. The pressure from it is pushing my cerebellum right back down into the foramen magnum, back into the place it was before. Thank goodness it's not down quite as far as before-and Dr. Kim is really pleased with the way that portion of my brain looks. He said it's..in a word, "beautiful". (Leave it to a neurosurgeon to make a brain sound attractive.) He discussed all of the above shunt concerns and stated that he would like to avoid those complications and risks. Instead, he wants to do a different surgery, much like the one I had last year.  

He will go in through the old scar (zipper) in the back of my head and put little tubes in the cyst (like little drains) that will re-direct it into the normal cerebrospinal fluid (CSF) pathway.

This should keep the cyst drained, relieving the pressure on my cerebellum. 

While in there, he will also do a cranioplasty.  This will consist of a mesh plate being put in the little part of my skull that he cut out last time. My cerebellum is kind of slumping into that spot. 

As I'm sitting there, alone, trying to not look alarmed or dismayed, or even slightly thrown by this unexpected turn of events, he says, "Oh and you will need and ECHO (echocardiogram), because I have to go in pretty deep and will need you in the sitting position this time." 

Now, why that is so unsettling, I don't know. 

I left that appointment and drove straight back to the airport. I hopped on a plane and went to visit an old friend. This was pre-planned, as I knew I would want to get a firmer grip on things emotionally before seeing Bob, and besides, as long as I wasn't home, this wasn't real. 

My plan worked out beautifully (not to be confused with the beauty of my post-decompression cerebellum). I greatly needed the time away, just to laugh and joke around with my friend. However, it did make me a bit sad. I've moved so much over the past few years, I have literally NO close friends nearby. Trust me, at times like this-a girl wants her friends. (and her children and her mommy). Wonder what it's like for people who live in the same place with the same friends for their entire lives?  Do they see the treasure that is right before them? 

Surgery will come quickly-it will be the day after my birthday, two days after Bob's birthday, four days after our first anniversary and three days before Easter. (Do you remember enough of elementary math to figure that out?) 

So, for now, we are making plans. We have to decide what to do with our pets for a week or so, decide where to stay in Houston, what to do about Easter, coordinate travel plans with my mom, arrange our loft in a user friendly way, finish our taxes and so on. 

Honestly, I'm still in shock a little. It just doesn't seem real to me that this could be happening again. A little bit of surgery wasn't so hard to conceive of. I just didn't expect this.  

I thought the arachnoid cyst was the least of my concerns, my focus has been on Chiari..so much that I have barely skimmed the surface of the available arachnoid cyst resources.

Times like this I do miss close friends and family,  I long for a home church, and I wonder why we live so far away from everyone we love. 

One thing I know for sure: Whining never got me anywhere.   I know that over the next week or so, things will fall into place.  As soon as plans are in order, I will feel more confident  and will be ready for whatever comes my way.   Having a set agenda, a checklist, a schedule of events is comforting to me.  As a matter of fact, I just scratched off one item: Write a new blog post.---CHECK!

Below are pictures of the last few weeks..and  links to info on arachnoid cysts, Chiari, surgical positioning and my CaringBridge site. 

Thank you for reading and for caring. --M

Links:

Positioning: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2265668/

Arachnoid Cysts: 

Webinar by my neurosurgeon: https://memorialhermann.adobeconnect.com/_a976765836/p6tcaue0xgc/?launcher=false&fcsContent=true&pbMode=normal  (this is lengthy, but if you scroll to about 17 minutes in the arachnoid cyst portion starts)

Basics:   http://www.columbianeurosurgery.org/conditions/arachnoid-cysts/

Fenestration:  http://arachnoidcystawareness.com/tag/fenestration/

Chiari: 

http://www.conquerchiari.org
 http://www.chiariassociation.org
CaringBridge:
 http://www.caringbridge.org/visit/michelerobinson

Bob and I in London, March 2014

Katrina and I earlier week in Houston. We finally met face-to-face!

Rosalyn and I catching up in Louisiana earlier this week. We've been friends since high school

And Then It Came Back

"And then....it came back..."

I remember reading this words on someone else's Chiari blog, speaking of her post operative experience.
I thought, "How horrible, to go through that awful surgery, to have the elation of beginning to feel great, then the disappointment of symptoms slowly coming back--that would never happen to me-that must be REALLY RARE."
As I type this, I can hear the voice over from ABC's Wide World of Sports: "THE THRILL OF VICTORY....THE AGONY OF DEFEAT!!".   (I always wanted to research and find out how many broken bones that poor guy had in the commercial.)

I guess what I'm dealing with right now is the "agony of defeat".
The past few weeks have been particularly troublesome.
Headaches, Muscle Spasms, decreased hearing, blurred vision, trouble speaking, trouble swallowing, Dizziness...vertigo...weird numb sensations..numb face, fingers, back, pelvis.. I shouldn't type "pelvis"..that is very risque for a good Baptist girl...but, hey...it' s the truth. (and at least I'm not posting a picture.).  These are all intermittent, yet they can all be present at once, and can all be gone at once, usually it's just the same 4 or 5 things.

I know I shouldn't be.-but I'm a little angry about it.   I have been on this "positive in..positive out" mindset for  about 4 weeks...and I'm telling you..when I made that declaration-it's like I threw down the gauntlet and my brain said, "We will see just how positive you can be, Little Missy!"  (My brain uses the  Wizard of Oz voice when it says this, you know, the "I'll get you My Pretty!" voice) 

I try..I mean a really think I try to be encouraging. The whole reason I started this blog is to encourage others to fight this thing...to get down and dirty with it...to not let it win, rob our joy or run our lives.  Well, my friend--my fight is waning. I'm tired of it, I've had enough and I'm full. When the first few symptoms reared their ugly head this past July, I think I handled it pretty well...then again in October when a few more popped back up...I still looked for the positives. And now, while I do look for the positives...and feel blessed in many ways...I still have to get out what and how I'm feeling and I just feel...in a word...BAD.

I've become a liar. I make no apology for it. I'm a stinking liar.  When someone says, "How are you feeling?"  I say, "I'm fine"  or "I feel good".  Who really wants to hear, "I feel like crap, I can't feel the left side of my face and everything you are saying to me sounds like the voice of Charlie Brown's teacher (wah wah wah wa wa wah), the back of my head is pulsating with every heartbeat and my right hand has been  numb since 6 pm last night (time now..10:26 a.m.), about every other hour I think,"maybe I should go to the emergency room" , remind myself of all the Chiarians that have recently passed away (9 this year that we know of), then brush it off by saying to myself-"Quit whining-it could be soooo much worse".    I KNOW no one wants to hear THAT.  So, "I'm fine" basically covers it.

I feel like there is no one to tell (thank you, Katrina Powell for FB chatting with me enough to get me out of that funk for a few hours) that I can be real with.   Whether that is reality or my skewed perception--I have no clue. I just feel horrible. I'm sad. I'm disappointed and I literally do not know what to do next.

Current doctor standings..picking up MRI tomorrow to Fed Ex to Dr. Kim.  Concerned that this has recurred because my Ehlers-Danlos Syndrome issues were not addressed prior to first surgery which may have resulted in the re- accumulation of fluid in the arachnoid cyst area and my cerebellum settling right back down where it was)..so also sendiing fillms to EDS specialist in Bethesda, Maryland,..Honestly-I don't want to be my own advocate anymore. I want someone else to do it. (Thank you, Desiree Twait for all of the info you have provided me on EDS and CCI (cranio-cervical intability). 

Tonight, my husband looked at me and said, "Are you depressed?" I said, "no".. but am I ?  Desiree suggests that I haven't gone through the "grieving process" for my old life..maybe that's true-but since I've had issues my entire life..what did I really lose?  Some friends......yes. I grieve for that, friends are really important and I truly envy people with long term illnesses that have people that are there with them-in the trenches-fighting the fight-crying for the disappointments and cheering for every victory (Misty Daley..your bestie is truly blessed).  I feel sad that I don't want to go to movies  and am not up for running upstairs to the gym to work out.  I'm sad that I know working full-time as an RN is so challenging that I'm afraid of it. I'm embarrassed that I say the wrong thing A LOT and people always point it out and I feel stupid.   I'm disappointed that I have to explain this ridiculous condition to the same people over and over because I want them to do their own research...to come along side me and guide me to the next step, whatever that is.I'm mad at myself for being disappointed with them.
And I really feel bad that my husband has to deal with all of the above, every day. I'm sure if he were completely honest, he would admit the relief he would feel if he could simply send me back in for a refund.
So..yes..maybe I am depressed.  Maybe I shouldn't be sharing this in an open forum.
Maybe I should just continue the lie.

But then again...maybe you, or someone you love feels the same way..so maybe it needs to be said.
Maybe just having a voice makes a difference.  Maybe this is just an elaborate pity party on my part.
But do me a huge favor..Don't tell me to put on my "big girl panties" and deal with it (I've always despised that expression).  I might have to knock you smooth out--or in the words of Bon Qui Qui-- "I will cuuut you".

Just let me whine and lick my wounds. The fighter in me will return- I'm sure of it.
And when she does...she will track down that meek little voice whispering, "And then...it came back", wrestle it to the ground, slap a muzzle on it and lock it away for a good long while.
After all, I am from Mississippi.