Posted by Emily Block | 0 comments

...And the Bad

   Unfortunately not all my upcoming adventures are going to be so fantastic.  During the CCSVI surgery my doc saw something that may be dodgy when he was all up in my brainstem and recommended I go see this specialist about cerebellar tonsils in NYC.  I had no idea what that was, but it was in NYC, so of course I was more than ok with that.  If I have to go on a medical vacation, it might as well be someplace awesome right?  

    But soon I was brutally assaulted with reality when I brought up this cerebellar tonsil thing with one of my good friends who happens to have the same health issues as me.  He kind of blanched a little bit and then told me that "cerebellar tonsil issues" was code for chiari malformation.  Which just flipping sucks because chiari malformation, if I have it, requires brain surgery.  Bloody flipping hell.  
This is what it looks like.  More info here.

   Much research into this ensued and we decided that I would have an appointment with this super neurosurgeon (who is actually in Washington DC, not NYC) after I'm done with school in May.  But then my stupid body started doing more stupid things and I learned that those stupid things were not good signs in my neuroanatomy class. So, we moved it up to seeing the doc during my spring break.  Oh yes, I pouted, but got over it quick enough when my awesome family decided to make it into a family vacation so I could see all of them and have some fun outside of the medical stuff.  Now it's just about three weeks away and I'm really happy I pushed up the appointment.  My stupid legs have been extra stupid lately with tripping and falling when I go to get out of chairs a lot more often.  Plus lots and lots of shaky time.  I had a neurology appointment and it showed a bunch of things were getting worse in terms of reflexes and a bid in coordination.  In addition to chiari testing, I'll be evaluated for tethered cord, cervical instability, syringomyelia, and those tests would likely show anything else that would be wrong with my CNS.

   So that's where I am.   Most of the time, I'm pretty ok with things. I know I'm pretty good at getting through yucky stuff and I have a great support system.   Still, the idea of a large, painful surgery isn't thrilling.  I won't be able to get a job this summer or do some of the international trips I was pining after.  Hopefully it won't mess up my graduate school work, but it is a possibility.  I'm a little scared, but less about the surgery and more about the weakness getting worse and whether that will be progressive or permanent. 

   Daily life has a way of consuming most of my thoughts through.  Grad school gives me plenty of things to think about (and study) and do.  
   I'll be posting updates regarding these tests and surgeries on my caringbridge page since I want this blog to be more focused on fun stuff.  :0)


Thanks for stopping by! I'd love to hear from you!

Total Pageviews