Living with Chiari

Well, I got back from the neurologist today with answers, but also with more questions. I have an Arnold-Chiari Malformation in my brain. It means that the tonsils of my cerebellum descend out of the hole at the bottom of my skull and into the cavity where my spinal cord resides. Thus crowding the spinal cord and creating pressure with leads to: headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea and some other more serve things that I won’t mention here since I don’t have them.

***UPDATE***
Here is a picture of my MRI. The Yellow line is where a normal brain doesn’t descend below. The blue line marks how far mine actually is below. In measuring a few times (since we are EXACTLY sure where the line goes), we get anywhere from 17mm to 20mm descent. That is quite a lot even in Chiari terms. The doctor even told us that he called us in because this is the biggest one he’s seen in a long time.

I have had this malformation my whole life. And knowing what I know now, I can look back and see the symptoms have always been there but I had no idea some of the things I dealt with weren’t normal. That is just how it always was for me, and there was no way to know otherwise.

While it is not life threatening in the least, it does pose a few problems for me. I will have to continue to deal with the symptoms for the rest of my life. Or we could have surgery to widen the hole at the base of my skull (among other things). The surgery doesn’t always work, and since migraines run in the family I still might get them, but maybe to a lesser extent.

We have been referred to a neurosurgeon, and are awaiting his call to schedule that appointment. At this point in time, I am scheduled for two more MRIs on Tuesday to check my spine for complicates that can occur from the Chiari.

Those are the results from my MRI today. We’ve got a lot of decisions to make, and would greatly appreciate all positive thoughts and prayers on our behalf.