Sarah Angelini

My surgery was successful (as far as I know), The compression in the back of my skull had warn the bone down to as thin as a babies, and my brain stem was off to one side. I meet with the neurosurgeon October 21st to see how my incision is healing and when I should be going back to school. I was completely incoherent from Monday the 6th until about the 12th, ( I was fully awake but on so much medicine I couldn't remember anything to save my life) I have little to no recollection of any hospital visitors, phone conversations, or any other human interaction during those 6 days. My life consisted of nausea, extreme pain, sleeping, becoming overwhelmed with emotions and crying. My pain is now in my body, my knees and basically the entire lower region of my pelvis and back. I lose my hearing in my ears periodically and sometimes at night my eyes will shake when I try to go to sleep, making me feel like I'm having a seizure.

Surgery is weird, at first I had so much hope inside of me and after the decompression surgery I felt invincible, in the worst pain of my life but blessed to be alive. My family and friends were all here for me 100%, making me feel like I could do this no matter how nauseas i felt or how painful it got. I guess my faith in myself is fading, or maybe theirs. With the loss of intensity in their support and understanding of exactly what I'm going through I've lost touch with the "I'm absolutely blessed and can't believe I'm alive to fulfill out each day the best I can" attitude. My brother said something yesterday that sort of started all of the good positive feelings to lessen, something along the lines of "Just because you had brain surgery doesn't mean you should be pampered, it doesn't make you special". Those weren't his exact words but it struck something inside of me. Afterwards I just sat there thinking and crying, how heartless of him, it takes everything inside of me each day to keep going and to try to stay as positive as I can, which is when I started feeling more and more alone. The thing is, nobody understands that living, doing everyday things is a TASK. I wake up in the morning (extremely early some days) in pain, like I'm a 100 year old woman who's broken her hips, knees and back repeatedly. After laying in bed exhausted, and not being able to get back to sleep I meander downstairs, get some breakfast and take my pain medicine along with some steroids for swelling and after a couple minutes head back upstairs to try to fall back to sleep. Normally I sleep until 11 or as late 2 sometimes even. When i wake up, I go back downstairs for more food (I'm starving by then) and then attempt to wash myself the best I possibly can. I don't know how it is for others who just had the decompression surgery but bathing is the hardest, most exhausting thing I have to do each day. After a bath thats agonizingly long I'm completely and utterly exhausted, and not to mention I'm not that clean either. The rest of my day is either me sleeping or laying down. I'm a 16 year old girl, but I can hardly move around for long before my body seems to want to give up and stop completely. My decompression surgery was October 6th, and since then I hadn't left the house besides to come back from the hospital and for a few car rides with my mom to drop my boyfriend off at his house (car rides are also very exhausting, and painful).

Yesterday was the first day I left my house in clothes (normally I'm in my pj's) with any intention of leaving the car whatsoever, I was starting to feel more like a hermit crab rather than a teenage girl. Me and my mom decided we'd try really hard to get me through the salvation army, I just needed to get out. After walking around for 5 or 10 minutes my entire body just couldn't do it anymore, I made sure to eat tons of food for energy but my body cannot handle me shuffling around (my movements aren't really steps right now, more like old people shuffles). I found a nice little chair and tried to regain some energy because I was completely determined to get through the store, which in the end I ended up doing. The thing that struck me most is how different I felt, My hairs sorta greasy, no matter how hard I try to wash it. It's really thin and falls out all of the time everywhere, I'm weak and the last thing on my mind is to put on some makeup. The range of motion in my neck is still coming back so I move more like a robot than a human. People look at me with this look in their eyes, like they feel bad. With all those people walking around me inside of that store I felt less human, I felt like someone who everyone knew was in pain, everyone knew was struggling to smile and I hated that.

I guess this blogs not as nice as i thought it would have been, but its 6am on a Thursday morning and sleeping was the last thing I was going to be able to do. I hope that even though my struggle seems like a lot of me right now (which it is), if anyone else with Chiari is reading this then disregard what I'm saying because you can absolutely do it, even if you have your down moments and thoughts like I do. Right now I just wish I had someone to relate to, someone who's been through this all before.

These are not the greatest pictures ever, but this is just some pictures my mom took of me at the hospital. My lip got a huge blister from being inhibited face down for 3 hours, it was absolutely humongous.














I'm trying to stay positive.