Tuesday, March 18, 2014

MoyaMoya - Finally a Name

You know that moment when you finally have a name for what you've been feeling that confirms you aren't crazy... but at the same time it's scary as hell because it's truly a serious condition? Well, I hope you don't ever know that feeling -- but it is both comforting and frightening at the same time.

I recently experienced this - less than a month ago, I was sitting at home and received a phone call that would change the course of life for sometime to come. I wasn't brought in to the office to receive such news... but my former doctor's nurse called me to tell me that I was diagnosed with MoyaMoya Disease.

It is rare, but explains so much about what has been going on with me since January 2013. While I have had it longer than that, it's when things started to change. I had my TIA in January 2013, and was released from the hospital not thinking that there was much to follow up on. I was told that if I kept my blood pressure in range there was nothing to lead them to believe anything would be a problem in the future. In truth, that was completely wrong -- my blood pressure was only a minor detail in the process. 

I had no idea that a water challenge among friends would lead us down this path, but I'm glad it did. On December 30, 2013... I started a water challenge with a group of fabulous ladies and dropped all caffeine from my diet. It lead to 26 out of 31 days in January 2014 having debilitating headaches. I went to see a neurologist (a whole story for another post) -- but she decided to do a repeat MRI to see how things were looking in my brain. A week later, I learned it was abnormal and further testing was needed. Another week later, I learned of the MoyaMoya diagnosis.

I had heard of MoyaMoya before because my cousin's daughter had been treated for it roughly a year ago, and is doing great... but I knew it was serious. I knew she had brain surgery for the condition, but that things now are going well for her. What I wasn't sure about was the difference between having it as a child vs being an adult. I also wasn't aware that you could have it on both sides and require two brain surgeries.

I know that now, because that is what I'm facing at the moment. I've heard how bad it is from Stanford, and have met with a surgeon here in Houston as well. Going to Stanford would mean being in California for a month, and away from my kids/family/friends/comfort zone for the entire surgery process. Having the surgery here would spread it out a little more and we think make it logistically a bit easier to deal with.

None of the decisions we are making are anything we thought we'd be dealing with, but we are facing it while navigating what we think and pray will be best for our family. We are writing our wills, because we've needed to for a while -- but something about brain surgery makes it more imminent at the moment. We have met with a couple of different doctors to get different opinions, now we move forward with our choices.

I believe we have landed on a surgeon, and will be staying in Houston where our entire support system (give or take a few) is within 4 hours of us. The plan right now is that I will be having a cerebral angiogram next Thursday in the afternoon to look more in depth at what is going on in my brain as well as to look for donor arteries that can be used to do a direct bypass on each side of my brain. From there, we will set up surgeries that will be 6-8 weeks apart.

This article came out yesterday just before we went to meet the doctor that we are planning to use -- so I wanted to share it with you as well.

I'm hosting fundraisers for myself, because these procedures aren't going to be cheap -- and anything I can do to take some burden/stress off of John right now makes me at least feel like I'm a little bit in control of my own life.

Scentsy (new spring catalog!!!)
Wildtree (Simple. Healthy. Dinner. is a good new program OR if you're interested in a freezer meal plan, contact me and I'll get you a menu together)
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