I met with my neurosurgeon in Colorado to discuss my current symptoms and recent MRI scans. After reviewing everything, we decided that the best option is a revision surgery. That means that I am going to have another brain surgery.
The surgeon said he saw a fluid collection in the first MRI from a few months ago. (He showed it to me at our last virtual appointment). He could not find it on the most recent MRI from the ER. Although he can clearly see that the CSF flow is diminished. CSF is cerebral spinal fluid, the fluid that flows around your brain and up and down your spine.
He believes the reason the fluid collection is not showing is because the leak is active. The CSF is flowing in and out of the pocket. It’s basically a spinal leak that doesn’t leak through the skin. There also is an effacement (pressing on nerves) that is probably from adhesions in the dura (the thick lining around our brains), which could be the cause of the blockage that is causing the decrease of CSF flow.
The surgery will be to drain the fluid and repair the dura. There is also an element of exploratory surgery to look for any adhesions, and anything else that could be causing problems.
I will be going back to Colorado for surgery. The surgeon who did the first surgery is no longer at this hospital, but I really like the surgeon there now. He is very kind and thoughtful. He offered to meet again in a couple of weeks to go over any questions that come up.
The surgery is not any more high risk than the first one. It’s about the same surgery length (around 6 hours), three days in the ICU, a few days at a hotel before traveling home, and then a full two months recovering at home.
Their earliest appointment is in December, but I asked if we could do it later. I would like to wait until after Christmas. The surgeon said we can do it in January, I just need to have it done in the next few months. I am really looking forward to Christmas and hopefully traveling to Colorado and back in January will be easier than right before Christmas.
We have to wait for the pre approval with the insurance company, before we can schedule the surgery date. The surgeon said that given the circumstances and the scans he doesn’t think there will be any problems getting the approval.
In the meantime, my primary doctor gave me a prescription for an anti nausea medication that is a sticker you stick behind your ear, like what people use for seasickness. We’re hoping that helps settle down the nonstop nausea and hopefully will keep me from having any more episodes of non stop vomiting. Maybe it will even help me to be able to stay hydrated without a weekly IV.
I still have infusion appointments to help me manage and cope with the head pain, nausea, and dehydration.
I have been going to physical therapy twice a week for the last two years. I have worked so hard to get to where I am. Several months ago my progress began to decline. I developed more balance problems, weakness, and fatigue. Some of my cognitive symptoms have become more pronounced, like short term memory, concentration and neuro-fatigue.
I talked with my physical therapist and she said it’s too high risk for me to continue my sessions right now. We are going to wait until after I have surgery, so we know more about what’s going on. I love physical therapy and seeing the tangible progress of my work. My whole week was built around these appointments, so it feels very strange and hard to not have my routine.
The symptoms that are new and progressing are: numbness that spreads over my body, feeling winded, and changes in my vision. Sometimes that happens when I’m cooking on the stove. I have to sit or lay on the kitchen floor until it passes. When I stand up my vision goes black, my face feels flushed and I get numbness all over. It also happens often when I’m walking. It’s been getting worse. If I’m laying flat on my back there’s still pain and lightheadedness, but not as bad as when I’m standing or walking.
I am still processing that I am having brain surgery again. My thoughts and feelings are all over the place. I feel relieved to finally have an answer to why I feel so sick. I am also terrified and feel the dread of having to go through brain surgery again because the surgery and recovery are brutal. One moment I might feel absolutely terrified, angry and resentful, and the next I feel a strange kind of peace. I knew there was something wrong. I couldn’t put it into words, but I knew I didn’t feel right. There’s peace in finally having an answer and a solution. Not the answer I wanted at all, but I’m hopeful that this surgery could help me.
Prayer requests:
Please pray for wisdom in all the decision making and that God would provide for all the needs surrounding this. I had a phone call with my new case manager from my insurance. She is going to share her notes and pass me to a coworker who is licensed in both Washington and Colorado. My insurance policy doesn’t cover any travel expenses such as transportation or lodging. After we schedule the surgery, I am going to reach out to the nonprofit that flew me and my mom there before, Angel Flights West.
Pray for me and my family as we all try to wrap our brains (humor intended) around this. Pray for strength and peace for them as they walk through this with me again.
Please pray for peace and comfort for me. My heart feels so heavy right now. My feelings are all over the place from feeling relief that there’s a “solution” and being terrified of going through it all again.
Please pray for us as we navigate the arrangements. We haven’t even begun the process of scheduling the surgery and figuring out the details of the trip.
“Cast all your anxiety on Him because He cares for you. “
1 Peter 5:7
Love, Shae
Weathering Chiari 