Weathering Chiari

I just got home from the ER tonight and I need some prayer. Over the last few months I have been having a lot of new symptoms. My neurologist ordered an MRI last month so we could make sure everything post surgery had healed well.

The MRI came back showing a small collection of fluid at the surgical site, that was a change from last year’s MRI.

There are not really supposed to be any changes in my scans. My neurologist wasn’t sure if that was a “normal” thing for after surgery, or concerning, so he referred me back to my neurosurgeon in CO.

The surgeon who did my surgery is no longer there, but I met with a new surgeon and he said that he wanted me to have a CINE MRI to see if there was a blockage of CSF fluid. The way my insurance works my primary doctor here is the one who has to order it. There was a lot of paperwork problems and the MRI has still not gone through the pre-approval with insurance. I’ve just been patiently waiting and calling my primary doctor’s office for updates.

I have been feeling very sick lately. When I met with the neurosurgeon (virtual appointment) he said I was back to pre surgery symptoms. I’ve also been feeling very faint and weak. It tends to really spike when I’m sitting up or standing, so I’ve been pretty much laying flat the last few weeks.

This morning my nausea and head pain woke me up from sleep. My blankets and clothes hurt my skin and my brain felt like it was spasming. It quickly progressed to me violently throwing up. We called my primary care, neurologist and neurosurgeon and finally ended up at the ER.

They did the CINE MRI showed Pseudomeningocele, an abnormal collection of CSF caused by a defect in the dura, the thick lining around your brain. The scan also showed the CSF flow is diminished, I think the fluid collection is blocking part of the flow and that is what is making me feel so sick.

The ER doctor consulted with the hospital’s neurosurgery team and they determined my case was too complex for them to handle. They said it is a serious issue, but not acute tonight and they just aren’t equipped to treat me. I was able to come home tonight, I just have to go to the OHSU ER if symptoms escalate. They recommend that I go back to CO for treatment.

The next step is sending all the reports and scans to the neurosurgeon in CO and talking with the neurologist here. I don’t know what the treatment will be or if I will need to go back to CO? Maybe CO can consult with OHSU?

Please pray for guidance in all of this and some relief from pain. There really aren’t meds for me that help with this.

Thanks,

Shae