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. 


  1. :( Prayers for discernment and wisdom but most of all for you to know peace in the midst of chaos and uncertainty. xoxox

  2. Hi Michele...I am so sorry that this happening to you. I know there is nothing I can do to help, but please know that I am praying for you. Please feel free to contact me if you ever need to vent, I think you have my email, if you don't let me know in a reply and I'll send it to you. Dave