Saturday, March 29, 2014

Dr. Kim Visit Results

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

Grey's Anatomy Quote on Chiari  

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.
VP Shunt
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' 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 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


Arachnoid Cysts: 
Webinar by my neurosurgeon:  (this is lengthy, but if you scroll to about 17 minutes in the arachnoid cyst portion starts)
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

Sunday, March 9, 2014

A Little Lesson In MRI's

I wish I had some great take on a blog post right now.
You know, some comical slant to make the story flow a little better.
But really...I just don't.
Not that I'm negative.
I'm just out of ideas.
I got the call from Dr. Kim on Friday that, as I suspected, the cyst is back.
I will fly down to Houston to meet with him 3/25/2014  to discuss options.
Remember, when I had surgery last year, he told me if the cyst came back I would need a shunt.
I expect this to be a CP shunt..cysto-peritoneal.
My best info on this is that a burr hole is drilled in the skull, maybe a few incisions behind the ear, then a tiny tube (shunt) is inserted, then it is fed through the body and into the peritoneal cavity (where all of the gushy organs live). There will be at least one abdominal..or maybe on the side somewhere..incision.
The purpose of this is to allow excess CSF, which fills the cyst, to drain into the peritoneal cavity, keeping the cyst from over filling too much, which pushes my cerebellum downward.
How about a brief anatomy lesson.

Today at the Perot Museum, I snapped this photo of a normal brain:
Normal Brain

Now this isn't a fabulous photo, but should be good enough to show the differences.  Here is my brain before surgery last year:
My brain before surgery last year. 
See how in the normal MRI the re is a dark space at the bottom of the brain..this is cerebrospinal fluid (CSF) that the brain floats around in, it cushions the brain and it flows easily from the spine opening (foramen magnum). Compare it to last year's MRI..see how the cerebellum is wedged into the spinal column-THAT is the Chiari Malformation and there is excess dark space (CSF) on top of the cerebellum..THAT is the cyst area (Arachnoid Cyst). 

You can see how this would cause many problems as many cranial nerves originate in the foramen magnum..there is constantly a pressure build up and many body functions are, hearing, balance, numbness, headaches, nausea, swallowing problems..and the list goes on and on.   For the sake of comparison, here is  my MRI from a few weeks ago:
MRI  Feb. 2014
Here you can see that dark space is back, marginally larger than before surgery and the cerebellum is not wedged in there, but is tucked down there pretty good,  putting pressure on all of the same cranial nerves and pushing the brain stem forward.  So now the big question--what to do?  Shunts do allow for alleviation of symptoms, but come along with shunt revisions, clogged shunts, shunt infections..and so on. 

None of my Chiari friends have this type of shunt, they mostly have LP  (lumbar-peritoneal) shunts, a few having VP (Ventricular-Peritoneal) I would appreciate any information you may have on CP shunts.

I must be in denial, because I didn't even allow myself to really research shunt placement until I heard back from Dr. Kim. (anyone that truly knows me, knows I'm a research hound, I must be fully informed at all times)
 I knew what he would say, and thought I would be prepared, but I wasn't. 
When I found out I needed Chiari surgery..I felt first validated, then elated to find treatment. I had done the research, knew the options, the methods..the madness..then the reality hit and I hit an emotional wall. 
This time, not at all the same.  Validation and elation haven't shown up..just this sick feeling in my chest that signals uncertainty. My professional life as a nurse, my ability to build a new business that I can work around my lifestyle, the ever-playing tape in my head that says Bob should return me to Wal-Mart (they will take anything back-one time I was in there returning something legitimate  and a lady was in front of me returning half of a loaf of bread..REALLY???)..He really has been so great to me and I know this must be as hugely disappointing to him as it is to me. ----Not to mention that I'm now digging in to research so I can make the best most informed decision when given options. I'm not worried about the pain..I guess it's the idea of having a shunt up more of myself, what if Dr. K just wants to wait and watch..what if he wants to proceed immediately, what do I do? what do I not do? -- just the whole ball of wax. 

Thank you so much for your kind emails and posts. If I haven't gotten back with you personally yet-Don't worry, I will..If I haven't returned your calls and/or texts..please call or text again. I can't seem to get it all done. Please don't take it personally.  I need you. You keep me writing, even when I feel I have nothing to say.
 Your prayers, your comments and your encouragement are treasured.

I will update you when I know more.