“When life gives you a hand of a game you’ve never played, you learn to play it, you learn to play it better and you help others learn to deal and conquer along the way.” -Mel’O
Back in mid-February I noticed I felt congested and like (to be honest) I had something in my nose that just would not come out with blowing my nose. I felt the urgency to look in my nose because it felt like something was there in my right nostril limiting my nasal passage as well as irritating me with each inhalation. I looked in my nose and knew immediately, “Nasal Polyps”. I called my PCP (primary care physician) the next morning to make an appointment and sure enough, “Nasal Polyps”. Not only in one nostril, but both. ENT referral submitted for that. Meanwhile, I had expressed other symptoms that didn’t add up to the nasal polyps and being I was prior diagnosed (now believed to be misdiagnosed) with fibromyalgia and again, some symptoms just didn’t add up, so she wanted a CT scan of my brain to check for a tumor, lesions or stroke damage. (MS and fibromyalgia are very similar in symptoms as well as lupus oftentimes so in case of new developments on my brain we needed to know.)
The CT results came in, report showing that I had inflammation on my brain which lead to the further ordering of testing by way of an MRI. The MRI report was sent to my PCP where I had another follow-up and As of April 10, 2017 at that visit, I was diagnosed with Chiari Malformation type 1. My PCP was shocked, I sat there stunned a minute as she was puzzled as well because this was not on the idea list in anyway of what could have been causing me to have the symptoms of- hearing impairment, swooshing and thumping sounds in my ears, vertigo, difficulty swallowing at times almost choking, neck pain and pressure, numbness and shakiness in limbs, legs worsening with weakness and pain at times, extreme fatigue, insomnia, peripheral vision issues and blurriness to name just a few things. Furthermore, I had never heard of this condition and as much Dr. House, Grey’s that I have watched and not to mention cases I booked in the OR, I had not a single clue, it was a foreign language to me. My PCP telling me there was no medication she could prescribe, no therapy she could order and I needed to see a neurologist to get to a neurosurgeon in order to get care for this, I just sat there taken away for a minute. In all honesty, I wasn’t scared, I didn’t panic, I didn’t become afraid and I still am not even after asking her, “well there’s a cure right?” and she responded with a face of disappointment, “there’s no cure.” Even in the moments of my deepest concern hearing those words repeat in my head, “there’s no cure”, I drown those words with faith in knowing “I have been healed before.” God’s word tells us that no weapon formed will “prosper”, he didn’t say they wouldn’t form.
“What Is Chiari Malformation?
a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.” (ConquerChiari.org)
Common symptoms amongst 95% of Chiari Patients, patients typically experience at least five of the following symptoms:
Then we get to the frustrations, which I have actually been able to keep limited. Finding a neurologist or a neurosurgeon who has experience in this condition is like pointing out a flea on a dogs back. The knowledge and experience of this condition simply isn’t out there and it’s saddening. 1 in 1000 children are born with this condition, many adults acquire it in their 20’s and 30’s without having any signs or symptoms of it prior, even some have had it discovered without any symptoms. My first referral was a neurologist who specializes in migraines and botox to treat them, no experience with Chiari. In the entire state of NC, there are practically two options that I found to be best for me, one neurosurgeon at Duke Neurosurgical and one Dr. in Hendersonville, NC, Dr. Rosner who specializes in Chiari. Duke has a well known, highly reputable medical center, their basketball team…. well, Go Tarheels (lol)! Anyway, Dr. Isaac Karikari, MD is the next stop.
What does my average day feel like? It really changes from day to day, just as it has been from the original diagnosis of having fibromyalgia. The weather effects how I feel, sometimes it can be a beautiful day but if I do too much “living” for the day, I pay for it for several days to follow oftentimes. I am never not in pain in some part of my body, it’s just a matter of adapting and pushing forward, mind over matter so to speak. There are times I am scared to drive because of vertigo, sometimes peripheral vision lacks and vision all together blurred. This also discourages me from reading, hinders me from understanding text written or sent in emails and not to mention the brain fog of just feeling plain stupid at times like I am incompetent and my brain is fried in that moment. I now have a decrease in appetite and even when I can and do eat, I feel nauseous a lot, the last few days I have vomited and had stomach upset even with water and eating light with soup, crackers, things like that. I am running a low grade fever of 99.4 which I notice has happened several days a month for at least the last year. All of the symptoms of “fibromyalgia” I have dealt with the last two years or so. Memory loss, I blamed on mom brain for so long but it’s way more than mom brain. I cannot find important things that usually I would easily know where they are like birth certificates, immunization records and records of house repairs. I also forget things like where I left my shoes, my purse, hair brush, often lose cell phone, keys and phone chargers, forget password combinations and other things like events that are regularly scheduled.
What is the treatment process?
Do people want pity or special attention because of having a chronic illness/disability? No, certainly not the majority, especially me. What most people want who have this condition or any condition is simply understanding, respect as anyone else and awareness about their condition, most of all- cures and prevention! There is very little understanding to both fibromyalgia and chiari malformation. So I have felt like I am a magnet to these weird diagnosis’s that have no great treatments, not top of the list for medical research or breakthroughs, people think it’s all in your head, you’re a hypochondriac, you’re making the pain up because “oh it really can’t be that bad is it?” because “you don’t look sick” and “you were just out yesterday doing…” What people don’t get is chronic illnesses suck, not only physically but mentally because you get sick of feeling it, the moment you feel like you can run a marathon and actually attempt it or even a potion you are set back way more than you already were. It’s like borrowing time and the interest rate is high because you never get the payoff of being 100%. “Looking normal” is only the beginning of the battle each day. Some people cannot even do that much. Would you tell a child “but you don’t look sick”? Probably not, so don’t say it to adults either. It’s like saying, “you’re lying.” Chiarians have plenty proof they’re not lying about the condition and the symptoms that come with a diagnosis. For example, one day I posted a selfie on FB and of course people commented “beautiful”, “you look great” and so on. But my caption was about being a #FibroWarrior (Fibromyalgia) and one commenter said, “You never look sick.” See, I get it, it’s meant as a compliment but it’s really not. You cannot possibly think you see people 24/7 in their lives, you don’t see the mornings where it’s a fight to get out of bed because of debilitating pain, stiffness, exhaustion, fatigue then the 3 hours that it took to get cleaned up, put on a bra, matching “real clothes” besides sweats, yoga pants and a huge shirt because yes even clothes hurt sometimes. Just this week, I posted a selfie and similar occurrence with someone assuming in a message, “So I guess the condition isn’t that serious, what is it? You look amazing. Why are you seeing a neuro?” Well, my response probably could have been nicer but it wasn’t because it was an immediate reaction and running on 2-ish hours of sleep. The thing was, just a few hours prior I was crying my eyes out because I could hardly stand to walk straight. Most know when it rains, if you have an issue- it goes nuts! I was bawling and ready to just curl up in a ball and be over the day and it wasn’t even noon. But then I dug deep in myself and said, put on some clothes (comfy but cute), do your makeup, put on your Lipsense and smile like life is worth living even in this pain and that is what I did! So posting selfies is seeking affirmation of others? Certainly not in my case, it’s a seal of conquering another moment at a crossroad where I could’ve gave up or got up and I chose to get up and fight, war paint and all. Not every chronically ill person will do as I do but this is my way. Some days I simply can’t can and that’s okay, we all have them at some point but I have it set in my mind that unless you are in my very close circle, you will never see me “look sick”.
You don’t see the tears that fall early morning, midday, late night because the pain onset even more and all that person wanted was a little more time of “less pain”. See, most of us have become so used to it, we aren’t even praying that it goes away sometimes, we find ourselves just asking for “less” and more tolerance. You don’t see that she almost fell over from losing her balance 2 minutes before, you don’t see when a family member or spouse has to help him sit up, get out of the tub or keep steady because of dizziness, you don’t see that we really aren’t even sure if the cute selfie was really good because of blurry vision, you don’t see the swollen hands holding the phone taking the selfie or us-ie with kids or a pet, the swollen feet that are stood on, the shaky hands that hold the phone praying for a steady moment to capture quickly. Many of us can make “sick look sexy, silly and suave” because we are more than the illness, we are still who we are, we are simply fighting our way through every second of every minute of every hour of every day. You cannot see the moments a mother makes the decision if she will vacuum today or fold the laundry that has sat in the dryer for 3 days because little Jacob needs clean socks for school, she’s washed the load in the washer twice now to keep it from mildew because she cannot bend to unload it and her husband is away with work or she’s a military spouse hundreds of miles away from family without support and her husband is deployed. You don’t see the pain, you don’t feel the pain but please never speak as though it does not exist because you only see the strength.
I’ve mentioned “she” a lot through this because most who are affected by Chiari are women, there are boys and men affected but more often women. So please don’t think men aren’t suffering or that I am ignoring that fact that men have been diagnosed, became zipper heads and still in the ring for the full 12 rounds.
Help us Conquer Chiari by learning about the illness, being supportive and making others aware as well as be a voice with us on research, prevention and a cure. For more information, visit the Conquer Chiari Foundation. If you are interested in joining us in the annual Conquer Chiari Walk Across America: http://www.conquerchiari.org/ccwaa/ccwaa-main.html (my host location is Forest City, NC keep in touch for update on that if interested.) Also check out the event listing page on Facebook CCWAA17 FC. Early Registration deadline is August 16th to register online on the Conquer Chiari website linked above. Donation requests of $25 to receive an official walk t-shirt. All donations go to the nonprofit organization formally known as C&S Foundation (Chiari & Syringomelia) for medical research, education and patient resources.
Learn more about the CCRC (research center) here: