Optic Nerve Swelling

These last few weeks have been tough for me, and I know I needed to get things written down. To help inform friends and family, but also to hopefully let me start dealing with this stuff.

First off, I don't know why I think everything is all over and done, because apparently, that is not how my life works.  Okay, brain tumor, check.  I will just do a little surgery and then things will be okay. Well, the tumor is so big, surgery will not be enough, so guess what? Now I get radiation.  The radiation was a success, but it sucked the life out of me when I got the somnolence syndrome, but after whoppin' doses of steroids, I  prevailed and then on with normal life....

I was feeling pretty good and normal and was actually trying to exercise more.  I ended up doing some jumping up and down for about 2 minutes and then my eye and mouth started twitching uncontrollably.  I looked in the mirror and my mouth was pursed and I was not in control of it.  It lasted about 10 seconds or so, then I was back to normal. Still, it did scare me.  I contacted my neurosurgeon, and they weren't too impressed, so I just did my day to day thing with no exercising (which was depressing for me).

Then about 2 weeks ago I went to a Target clinic to get more contacts and during the visit, the optometrist got all worked up and took too long and got me all scared and called my neurosurgeon and an ophthalmologist.  I had an emergent MRI and multiple appointments and it showed that I had optic nerve swelling.  This left untreated could cause me to go BLIND.  AHHHH.  I'm already deaf in one ear and now there is a chance I will be blind too.

So, what's a girl like me to do?  Well, everyone's first choice was to throw huge doses of steroids at me to see if that changes anything.  Steroids just make me feel horrible! I am exhausted, yet I can't sit still, I can't sleep, I'm not motivated to do anything, I have no patience and my skin is crawling. So that is what I felt like, and my nerves still remained swollen.

Since that didn't work, my neurosurgeon talked with an interventional radiologist and today I underwent an angiography and I now know what is going on.  I have a collection of subdural fistulas in the area of radiation.  This was caused from the radiation. This is causing the optic nerve problems, and has also caused something called pulsatile tinnitis (I hear my heart beat all the time!).

The good news is it is treatable.  Next Monday, they will again send a small catheter up my groin and now this time will inject a polymer into the area of the fistula to shut it completely down.  If everything goes well, I'm cured!  Speaking with the interventional radiologist, it sounds like it should go well, but who knows.  My path is different, so why should it be easy.  I'll stay one night in the hospital, and then hopefully I can heal and move on.

Hmmm, move on.  It seems like every time I try to do that, something holds me back.  People at my age seems to think about the future and plan for it. Maybe I don't get that luxury anymore.  I might just need to put in all the stops in life right now and make my life the most fullfilling it can be, because I can't expect ANYTHING.  I need to create more, love more, life more.  And right now, I need to grieve a little, just a little and let me not be the strong one for a while.