So I am going to start out by listing my symptoms. Please do not see this as me looking for sympathy, my hope for this blog is to help someone who needs some help figuring out their journey with Chiari.
So here are the big dogs:
-Hypersensitivity to light or Photophobia: Although photophobia is the medical term, I'm not a fan of calling it that. The word makes me feel like each time I'm around light I scream like a seven year old girl. (Thank you Joe for that mental picture!)
-Eye Pain: most of the pain comes from the hypersensitivity to light, but there is another pain. This one is really hard to explain. At random times in the day, when my eyes can't handle anymore light or better yet for no reason at all, I will have this shooting pain through my eye. Its weird to say but I can feel that pain in the middle and back of my eye. Its like a hot needle being quickly shoved into my eye. Its so instant and so intense and so unpredictable that I actually jerk my head when it happens. When this happens I get a massive migraine/headache. Which leads me to… can you guess?
-Migraines/Headaches: these are horrible. Some have brought me to tears, others have caused me to hit my head against objects to relieve the pain. I have tried medications, sometimes they help, other times… they don't. Its like a pulsating pain that ripples across my head from the back of my neck, like waves crashing across my brain right to my eyes.
-Chronic Fatigue: Half of the time I sleep to escape the light and headaches. But almost all of my day, I am exhausted. This is a very annoying symptom. When my friends call me, they have all formed the habit of instead of saying "hi" they ask "did I wake you up?" This is not their fault, because 95% of the time they did wake me up. I just can't seem to stay awake and when I am awake there is the light. So I sleep to escape the light. I could, on any given day sleep 12-15 hrs if I let myself. I have to work really hard just to wake up to have a day. Other times, I have accidentally fallen asleep. There have been times where I grab my shoes to go and work out at 7:00 pm and wake up at 2:00 am with one shoe on, one shoe off. Having no recollection of ever closing my eyes.
-Dizziness: for a long time I thought this was just side affects from the eye problems and the headaches, but recently the dizziness happens with or without the eye problems reaching their extreme and sometimes without the the headaches. I am now waking up with dizziness that lasts for a few hours and then returns at the end of the day.
-Chronic Thirst: I am always thirty. I feel like I am always dehydrated. I constantly crave water. Truth be told I fight this one a lot, I have grown weary of having to pee all the time.
-Brain Fog: this as you may tell is not a medical term but it fits very well. Most of the time I have a hard time thinking through simple problems, I just feel out of sorts. Like my brain never fully wakes up.
-Neck Pain: I have chronic neck pain in the muscles of my neck. Now whether or not this is just a side effect from the surgery or is its a symptom I don't know. But this pain is a dull grinding pain like a pulled muscle that never goes away. I wake up with it and I go to bed with it. I have to sleep on a tempur pedic pillow or there will be consequences in the morning. But there is another new neck pain. This pain is a sharp pain that sticks every now and again in the center of my neck, below my scar.
There are a few little dogs as well:
-Numbness: while this one rarely ever happens anymore, it was extremely prevalent before my decompression surgery. At times, either side of my face or body would go numb. Once and only once, thank God, my entire body went numb, fell face forward into the carpet. We scheduled the decomp. surgery quickly after that event.
-Sinus and Mucous Problems: I have been to an ENT, I am barely allergic to anything (Alfalfa and two types of mold with long names I care not to look up and spell were the winners). My sinuses, for all intents and purposes, have no actual problems apart from a deviated septum (I always think those words sound inappropriate). The ENT could not explain to me why my body produces so much mucous. I have to do a sinus flush twice a day to make sure I don't get a sinus infection. Last year I had around 5-7, I actually had two clinics refuse to treat, them because they happened so often, unless I had a note from an ENT.
-Sleep Apnea: both central and obstructive. Obstructive occurs when the soft palette obstructs (no kidding) the airways when one sleeps. Central in a neurological problem in which the brain and heart and lungs get off rhythm.
-Depth Perception and Balance: Now I am the first one to admit I am a klutz (and yes! That took 5 whole minutes of me sounding it out loud to my computer and poking at the keyboard like an ape AND the use of google to figure out how to spell that one! I hate phonics). But there are times when I will fall over on a flat surface or loose my balance for no reason at all. I also have found myself on some days in which I knock over half of the things I reach for. For all the years of my life the world had no depth; I could look at a mountain and the trees all looked like they laid flat on the mountain's surface. I would misjudge distances all the time. No wonder when I play any sport it was a tragic event. I am happy to say that after my decomp. surgery my world became a pop-up book.
-Skin Problems: well isn't that a generic and vague symptom. I'm not completely sold on this one but for the past two months or so I have been in this epic battle with two rashes from hell. My PCP (Personal Care Practitioner, which I explain because the first time I read that acronym it took me ten minutes to get it) feels it is two different rashes. Odd things about this bad boy, or boys, is it doesn't hurt or itch. Steroids, topical creams, antibiotics, special soaps, and my personal treatment "Neosporin" haven't fully healed these rashes. Plus when you take off your shirt and our parents and your PCP all say "WOW!" at the same time, it might just be a problem.
-I also can hear a cracking and popping sound when I move my neck but that just may be from the surgery.
So as I finish writing this I have one thought cross my mind. "Holy Menorah Batman! I'm a train wreck."
You may see that I am posting this at Midnight Thirty. Which seems hypocritical from me stating that I am always tired and sleeping. All I can say is, this is my favorite time to be awake. Its dark outside and I can control the light around me. :) TBall
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