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.

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.