As most who read my blogs know I was diagnosed with a Chiari Malformation in 2006, I had the decompression surgery in 2012 and although the surgery itself was a success as time presses on my symptoms have been coming back as many "Chiarians" as we are affectionately called have experienced, except once the surgery is done the symptoms come back stronger. Fantastic.
So if you have a Chiari you know the pain I am talking about, if not well you will not fully comprehend the pain because it really cannot be described. It's a pressure like no other, a migraine times a thousand, your brain feels like it's on fire, your neck is always in a knot and your spine is always out of alignment and that is on a good day.
It sounds a lot like I'm whining and perhaps I am a bit so I apologize for that. Moving on. I have joined a bunch of online forums and online community support groups and I cannot believe how similar the stories are and how much support I feel and how I feel I can support others. So many men and women who haven't had their surgeries yet and are so scared to do so. I think back to mine and remember feeling the terror, wondering if I would survive at all, worrying about CSF leaks, all the details....it was so overwhelming.
Now listening to these people I can share my story and actually help to calm them. What to bring to the hospital what not to worry about. I know that down the road I'll need another surgery so I ask what to so with the second and third one and how these people handled theirs. A terrifying thought but none-the-less things I need to ask.
Of course every now and then someone puts up a picture of a lit purple candle to signify someone lost their battle with Chiari. Although this disease does not have the mortality rate as some other diseases it can take your life just as quickly. It's a harsh reminder of the reality that is only skin deep.
Not every post on these forums are sad or scary. Some are happy and light. One woman posted how she wasn't a "zipperhead" as we are also called because the scar looks like a zipper on the back of your neck if staples are used but in her case her surgeon used glue and dissolving stitches. I'm excited because it's been a year and a half and my once completely half shaven bald head is now fully grown in and the same length. My hair dresser just cut it yesterday and for the first time since I had the surgery she didn't have to get out the buzzers or put the other half of my hair up and she said it's finally grown in. I realize it sounds petty and vain to some people but to walk around for a year with people staring at you wondering what disease you have really eats at your self esteem. So small victories.
Now it's dealing with the pain. The constant migraines, neck pain, back pain, vision changes, balance changes, medication changes and all the fun crap that goes along with Chiari that was supposed to be gone for a while but now is back with a vengeance. Am I going to bitch about it? Probably, a little bit. Am I going to break down and cry? Occasionally. Will I curl up in a ball and ask why me? Once or twice I'm sure. But will I get up and keep going? You bet your ass I will. I kicked it's ass once, I'll do it again.
So to all my fellow Chiarians out there, it sucks a lot to have it, it sucks even more to deal with the pain, but we are strong, we are fighters and we can beat it. My advice is to join some online communities if you haven't already, get involved if you have a support group locally. If you haven't looked into a Neurosurgeon already, get all the facts and get at least 2 opinions on your case. It's a hefty decision and you should have all the facts. Best of luck! <3
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