So. I have some followers now and I’ve posted on various topics. I recently started vlogging. I keep waiting for the right time to write about my health conditions, but that moment never seems to arrive. I’m just going to start on it now because I feel like if I don’t, I’m not ever going to do it.
I don’t know why this is so difficult for me, writing about my health. Maybe because WordPress is a place I enjoy and go to get my mind off of my health problems? Probably so. But I really think it’s a necessary evil to do this because I want to find other people who have the same conditions. In this post I will talk about the worst (in my opinion) first.
I have Chiari Malformation and Syringomyelia. Technically these are two separate conditions, but one caused the other so I generally group them together.
Chiari Malformation is a condition that I have had since birth. (It’s like this for anyone. Either you are born with it or you’re not. This is not something that can just happen to someone randomly). Only, I didn’t know I had it until 2009. I was 29 when an MRI found the syrinx in my spinal cord, hence how I found out I have Chiari Malformation.
What are these two strange and hard to pronounce conditions, you are wondering. (Unless you suffer from one or both, or know someone else who does).
Chiari Malformation is a condition where the brain does not have enough room in the bottom part of the skull, so it is pushed downward through the opening that allows the spinal cord/spine to connect to the brain/cranium. (I’m trying not to use too many medical terms because you will probably be even more confused). Another reason I hate talking about this is because it’s so hard for me to describe.
Anyway, in my case, my brain was being forced down so much that it was putting pressure on my spinal cord, which caused the syrinx. A syrinx is a hole in the spinal cord that becomes filled with spinal fluid. The spinal fluid is supposed to surround the spinal cord to act as a sort of cushion to protect it. So my brain caused my spinal cord to start taking in fluid because the fluid had no where else to go since it couldn’t flow freely due to the bottom part of my brain being in the way.
There’s more to it, obviously but you get the idea. Three weeks after I found out about the Syrinx, I was having brain surgery. The surgery I had is called Posterior Fossa Decompression with Duraplasty and Laminectomy. More strange words that are confusing.
Basically, the neurosurgeon and his team opened the back of my neck all the way up to the crown of my head, took a piece of my skull away, cut part of C-1 and C-2 sections of my spine (neck), opened the Dura (protective sac that surrounds the brain), patched a piece of synthetic dura in to enlarge it, left the section of my skull out and stapled my head back together. I made this sound much simpler than it was also, but you get the idea.
I was in ICU for 3 days, in the hospital for around a week. The time after the surgery in ICU was the most horrible thing I have ever experienced. The pain was 10 times worse than the word excruciating can even come close to describing.
After I had been home recovering for about 6 weeks, I began having horrible headaches. I will give details if anyone wants them in a different post, just comment, but I ended up having Chemical Meningitis and THEN another brain surgery. That time I was stuck in the hospital for about a month.
I think that’s all I’m going to reveal for now, but please let me know if you want me to elaborate on anything. If you have or know of these conditions, please comment. Nobody understands what I have gone/am going through because I don’t know anyone else who has.
If you would like to know more of my story or have questions please feel free to ask. I don’t mind telling in detail, I just don’t want to get too specific if no one is going to read or get anything out of it.
Hope you are all well. Kat