Chiari Malformation in Retrospect

Okay, so that second surgery I needed a while back was actually pretty anticlimactic. I got in there on the morning, bright and early at 6:30AM, and quickly got taken to the day surgery unit where they put my ID tags on and gave me a gown to dress in. I had my consult with the anaesthetist and then sat around waiting for the surgery to begin. Right before they’re about to stick multiple needles into me, one of my doctors came by and asked to see my wound to see what was going wrong. He had a quick look and said “This looks like it’s healing pretty well, I can’t see any holes in it. Maybe we don’t need to do surgery”. He fetched my neurologist, Prof. Stoodley, who had a quick look and said that I had healed a lot over the last two days and that they’d leave it for now, but that I needed to come back in soon for an MRI.

So, thrilled to pieces, tired and very hungry, I got dressed again and they called my parents to come pick me up. Honestly, I was pretty over the moon.

Since then, I’ve had plenty of time to think back on what it was like for me before surgery. I don’t think I ever realised exactly how sick I was and how much pain I was in every day. Each day was a struggle just to get by, to do basic things like shower and prepare food. Things had been going on for so long like that, that I don’t think I ever considered how difficult things were. I suppose I didn’t really remember what it was like to just get through a day easily. I remember all the dark times when I’d be unable to pull a smile or even leave my bed for days, and at the time I always berated myself for not being strong enough. I look back at the days where I did nothing but stare at a wall or the ceiling for hours and hours on end because my disability had robbed my life of meaning, and it’s only now that I can see how much of a fight it was just to keep going every day. For a long time, we had very little hope that I’d ever be treated or cured. I was confined to an apartment, often alone, in pain, unable to look after myself, not knowing what was wrong with me. I look back at how I treated myself mentally, all the doubts I had about my self worth and my strength, and I feel pretty sad.

So here is an important message to others who are suffering from this dreadful condition: You are so much stronger than you think, just for getting through life day by day. The days that you can’t smile, and the days that you want to give up and not get out of bed, they don’t mean you’re not a fighter or not strong. They call us “Chiari Warriors” for a reason. Sometimes it takes so much strength just to live through the day and not lose hope or lose faith in yourself. It’s all made so much harder by how rare and unheard of our condition is, and how ignorant so many medical professionals are about it. I don’t even need to tell any of you to “stay strong”. You already are, and you always will be.

For those of you who can not be helped by surgery, my heart will be forever with you, and you will always have my deepest of respect. I’m so lucky that my condition was so effectively treated at age 23. I wish there was a way I could help all of you who are still fighting this every moment of your waking days, but all I can really do is hope that this blog gives some of you some hope, and some knowledge that someone out there does understand how hard it is just to exist alongside Chiari.

I’ll keep updating, of course. These were just things that I needed to say.


One thought on “Chiari Malformation in Retrospect

  1. Hey Ella,

    I’m happy to hear that a second surgery wasn’t needed. I’m sure that’s a HUGE relief. Just wanted to say thank you for writing this post. I’ve been down lately, because my symptoms have worsened lately. It’s safe to say that my quality of life has taken a nosedive in the last 2-3 weeks.

    It’s been nearly impossible not to get depressed about the whole thing. It’s so hard to put on a happy face when you’re at your lowest moment physically. But, your post has given me something to smile about. We’re always stronger than we think we are. Thank you for reminding me of that.

    Also…I realized last weekend that you commented on one of my blog posts over a year ago. I was just diagnosed with Chiari then, and you gave me some really good advice. I’m starting to notice a theme here. 🙂

    -Adam (Twitch)

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