Weathering Chiari

Friends,

It’s hard for me to write this because I’m having to accept and acknowledge that a third brain surgery is rushing at me like a freight train. I wanted to wait until I had more answers.

I have been struggling with migraine/head pain, nausea, blurry vision, worsening balance, etc for over two months now. The pain dramatically drops when I lay down flat, but doesn’t go completely away. 

I’ve been to the ER 4 times now for pain relief. A CT showed a pseudomeningocele (collection of fluid) on the surgical site. My primary care doctor ordered a series of MRIs with and without contrast for follow up along with a CINE motion study (CSF flow- the fluid moving around my brain and spinal column). 

The MRIs show that there is a fluid collection on my surgical site. I reached out to my neurosurgeon in CO and mailed him my MRI scans. He called me this week and wants to see me in person. I got an appointment with him in the first week of August. I’m also on the cancellation list so I could get in sooner. 

There’s a leak somewhere in my dura (lining around the brain that was patched) that is causing this collection of fluid and it probably needs a surgical repair meaning a third brain surgery. 

I met with my primary care yesterday to come up with a pain management plan until I meet with the surgeon. He put a referral in for the infusion clinic again (getting hydration and migraine medication). I’ve stopped all of my physical therapy for now until I’m cleared to go back. 

This waiting period is so hard. I just want to know what is happening and I’m having to wait for answers and waiting for the outcome. 

Thank you for your continued prayers on this very long journey. 💜

Shae

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“God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.” 

~ Psalms‬ ‭46‬:‭1‬-‭3‬ ‭