Verse of the Day

Monday, July 14, 2014

Phoenix Cyber Knife Follow Up

Today was my 3 month post radio surgery follow up.

My MRI is unchanged, as I reported in another blog post. However, I am continuing to have a multitude of neurological symptoms--- anxiety, dizziness, vertigo, headaches, numbness, weakness, fatigue, and occasional swallowing issues. Dr. Kresl reassured me that these symptoms are normal; I can expect my symptoms to be very up and down for the first year following radio surgery. He did refer me to an neurologist to do some further testing, but did not seem alarmed at any of my symptoms. Knowing that my response to radio surgery is not unusual is very comforting! I do not need to have another MRI for 6 months.

Dr. Kresl did refer me to Valley Rehabilitation for vestibular therapy. Hopefully, I can find some improvement of the dizziness and balance issues I'm experiencing.

I also got a referral for genetic testing. I want to have this information so that I can be a possible participant in future medical treatment/drug testing. Because there are at least 3 genes responsible for the cavernous angioma mutation, it is critical to know which gene I have so that I can be "paper ready" for any future trials. This is also good information for the kids to have--- not that I want them to live in fear, but I want them to be armed with information so that they can make good decisions regarding their health. My job will be to help the kids figure out what to do with test results. I don't look forward to this particular job as a parent.

I am still waiting for ACTH Stimulation test results. This is a test to evaluate my adrenal function and help my endocrinologist determine if I can safely come off the steroids.  I am so ready to be off of Prednisone!

And finally... our daughter is doing very well after radio surgery. She has been off steroids for 4 days and has some fatigue, but has no headaches or anxiety. She will need some blood work this week to check her adrenal function (she has Hashimoto's just like momma). She's a real trooper! I sure am proud of how well Miss T. is handling such a major health issue. She has grown up considerably in just a few months. I guess difficulties do make us stronger....

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