My Constricted Cranium: A Chiari Tale: Houston surgeons

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!

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