It has been quite a while since I have decided to write about my health. I guess I am just in denial of it all. More has changed since just the middle of December, and I feel like I just haven't been able to really reflect and focus on what is actually happening.
My day on December 29th started really early at the Swedish Pain Clinic.
[Oh yeah, side note I am now being treated at the pain clinic THANK GOODNESS. I had some trigger point therapy done on the thoracic area of my back and my doc Dr. Yu recommended facet blocks (rhizotomy) at my C2, C3, and C4 vertebrae in my neck. I had to have two diagnostic testings before he would actually burn and kill off my nerve endings temporarily.]
I checked in and went through with my second diagnostic testing which includes 6 much too long needles going into my spine... super fun. After that I had my neurosurgeon appointment to talk about findings from my continuation of MRIs to check up on my syrinx. I wasn't expecting him to say anything or to find additional fluid in the rest of my spinal cord BUT of course, I got bad news...
Dr. Delashaw came in and honestly had such a disappointing look on his face. He then tells me that my CSF fluid is running completely down my spinal cord. I guess that my case is one of the most complicated he has had in over 10 years based on the fact that I need a second and more aggressive form of brain surgery. In most of the cases he has had in the last decade, just about everyone responded well to just removing part of the skull and C1, and mine did work at first, but anatomy changed for the worst. Now Dr. Delashaw will be going in and opening up the dura (brain lining) and sew a patch in to expand it in hopes that my cerebellum moves along with it. While he is in there, he is going to explore and see if he needs to shave down the lamina of C2 and/or cut out part of my cerebral tonsils. All of this he considers "old school" surgery. He has definitely performed these techniques on patients in the past with great results, and he is hoping that it works for me as well, and that my CSF fluid will flow again correctly and have the continuous syrinx disappear. Phew. That was a lot of information. I'm exhausted just typing it out.
So here I am. Two procedures in the very near future. Jan. 9th (Monday) I will be having my nerves burned and that is just a very quick minimally invasive surgery. I am hoping that with the pain relief I am able to get from this technique that my pain management during my recovery goes a wee bit more smoothly. My brain surgery round 2 is scheduled for Monday Jan. 23rd. I am scared to death, but more frustrated than anything. The only good thing about having this surgery before is that I know somewhat what to expect and I have a whole list of do's and don't's.
It all just feels so surreal, like I'm living in a small box in the middle of the universe of my never-ending nightmare. I want to be "normal" and to do "normal" 20yo things and activities, and I know that I don't get to and I just have to deal with it because this is life and blah blah blah, but I don't want to keep brushing it off like it's nothing, because I should be at school right now dancing and learning about the amazing world and culture around me, but instead I have needles and a hospital bed looming in my future. And it won't be the last time I face this. Two brain surgeries within less than a year. Tell me all of the cliches about how life works and how it's not fair and that there is a reason for all of this, but I just don't want to hear it. I'm not bitter, I'm just frustrated and very very confused. I hope after all of this I can get on my feet and begin to do "normal" things while being "abnormal." All I know of right now is that art is everything, health is fragile, and Chiari needs more funding. Thank you for all of the support. #CMstrong
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