Hello. My name is Sara. On May 20, 2010 I had brain surgery. I also have fancy new titanium plate in my head. I’m feeling relatively badass lately.
Here’s the skinny folks. I have a brain malformation that causes the bottom most part of my cerebellum to grow out of my skull, through the forgem magnum and into/onto my spinal cord. This creates several problems. First of all, it creates pressure directly onto my brain. This causes daily headaches and migraine-like-holy-shit-headaches 2 to 3 times per week. In my case, it also caused double vision, hearing and vision loss and nerve damage. Secondly, the pressure on my spinal cord caused a serious interruption in the flow of spinal cord fluid. This caused a cyst, or syrinx, inside my spinal cord causing additional nerve damage, change in my gait, weakness in my limbs, loss of feeling in my face and partial paralysis. I have had this malformation since birth. The severe headaches began over a decade ago. I have had a headache every day for seven years. In the last 6 months I have had increased trouble with balance. Some days, it was hard to walk or hold my children.
I have been able to hide this very successfully for many years. As neurological symptoms have progressed, it became harder to hide these things. I ruined family vacations. I frequently had to back out of plans. I figured that if I could be strong enough to be a good mom and be good at my job, that it would be enough. I was totally used to it. I still had an amazing family, the world’s best friends ever, and a life that made my heart truly glad every day. Maybe it was a little harder than a healthier person’s life, but it was mine and I still loved it.
Lately, it didn’t matter how strong I was. I couldn’t be the mom I know my kids deserve. I had to put too much onto Augie. I was struggling to accomplish everything I needed to do in a day. Slowly, I was becoming so physically worn that all the positive attitude in the world couldn’t cut it.
I went back to my doctor recently and told that same story. A failed neurological exam led to an MRI. (I wasn’t too worried, it sure wasn’t my first MRI with all these headaches…) A neuroradiologist caught something that several other neurologists had missed. I had a 6mm Chiari Malformation bilaterally. My brain had escaped my skull. (Come on, this is totally badass though right?) I was referred immediately to neurosurgery. Upon further research, an earlier diagnosis of MS was finally dismissed (can you imagine how miraculous this was?!), symptoms were explained, and most importantly of all, my diagnosis was one of “We think we can help you, Sara.” not “Tough break, kid.”
It has been a long long journey. On May 26, 2010 I sat on my bed and cried tears of joy. For the first time in 7 years, I did not have a headache. I had forgotten what that felt like. I was overcome with gratitude.
I am healing now. I am 9 days from surgery and some of my symptoms are gone. (I can breathe so much better without pressure on my brainstem!) Some will stay. Some spinal cord damage cannot be repaired. (YET!) I’m ok with that. I’m ok at 90%, because with gratitude in my heart and all of the beautiful people in my life, I will achieve 125% every day.
So, that’s my story. This is the very first time I’ve told it. I’m glad to be able to share it with you.
I very specifically asked the surgeon NOT to touch the Jackassery Lobe. He complied. Fair warning.
Also, FACT: My husband can sneak video ANYWHERE. I plan to continue to share my experience with all of you over the next months. We have captured this entire experience with wickedawesome video, photos and words. Some of it is happy, some scary, some just plain gross. But it’s all part of this journey.