Wednesday, June 9, 2010

hoping for the beginning of the end.

So I've gone back and forth about whether or not I want to chronicle this journey. I've decided that I would create this blog to keep everyone updated, and I also feel like it's important for me to share this.  

Maybe at some point it can help someone else. Long story short: I've been in pain for 5 years, diagnosed with Chiari Malformation. (Basically a part of your brain hangs a bit lower than it should.) First it was 'insignificant,' so i went to see every specialist you can possibly think of trying to figure out what is causing all this pain. You name it, I tried it. Well, no witch doctor, but everything else. (Any of you who know me know about this pain monster that looms over me like a horrible black cloud)  

To learn more about Chiari Malformation, visit or  

We went to Milwaukee as a last ditch effort to find some answers and find relief. Lo and behold, Dr. Heffez (the leading Chiari doctor in the country) shows me an image I have never seen before. I'll attach an image at some point. As you can imagine, a squished brainstem is not ideal. Lots of stuff goes on there. and squeezing it causes all kinds of issues.  

So what happens now? There is no treatment for Chiari, there is pain management or surgery. Late-July, I will have surgery. Dr. Heffez will go in there and make room for my brainstem so there's no more squishing, and hopefully no more pain. The surgery is called a decompression surgery. Dr. Heffez does over 100 surgeries of this kind a year, while other 'specialists' may do 2 or 3. 

Let me share a few things:  
- I'm not sharing this information for pity or sympathy. In fact, I don't really want to talk about it. I don't want to tell the story over and over again. It gets old. I don't want to answer the question "are you scared?" Because yes. I am.  
- I don't have to have my head shaved. Only a little patch in the back about the size of your thumb.  

That said, I do want to document my journey, because this could mean a new beginning to my life. Any of you that have chronic pain knows how debilitating it can be, and how it completely alters you as a person. It colors every decision, every aspect, everything. It colors what you say and your mood, what you can and can't do. I am cautiously optimistic this is the answer to so many prayers. Also, I do want to keep people updated on how I'm doing. I am so blessed to have so many people concerned about me and hoping for the same outcome as I am.


  1. Good for you! This is great! Love you!

  2. I'm so proud of you friend and am happy to be on this journey with you!