Chiari malformation is “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,” according to Conquer Chiari. Here are 31 problems people with Chiari malformation will definitely understand:
1. Frequently find yourself wondering if you are a hypochondriac, mentally ill or just “lazy.”
2. Always picked last for team sports.
3. Severe headaches which can last for days (the kind that feels like your skull is trying to give birth to your brain through your neck and/or any other hole in your head).
4. Learning to ride a bike or anything else requiring balance for that matter.
5. Being able to sneeze, laugh and/or bend over without getting a headache.
6. The frustration you experience after multiple appointments with multiple doctors who all tell you, “Chiari does not cause pain or any symptoms and is just an incidental finding, not the cause of your symptoms.”
7. Finding a neurosurgeon or any doctor who specializes in Chiari in or near your home state who is also in your insurance network.
8. Learning how to communicate with doctors so you do not come off as “knowing” more than they do, or appearing to be a drug seeker or hypochondriac.
9. Dealing with mixed up brain signals that make you to turn right when you know you need to turn left. Thank goodness for GPS!
10. Learning brain decompression surgery for Chiari is not a cure, but you still need to have said surgery in order to prevent permanent nerve damage (without a guarantee surgery will help alleviate any of your current symptoms).
11. An over-sensitive nervous system results in frequent “unpleasant tactile experiences.” For example, needing at least ten napkins (ideally wet ones) to deal with sticky fingers at meal time, the weird squishy feel of cotton the balls in medicine bottles give you shivers up your spine and any accidental contact of teeth with tin foil is enough to put you over the edge.
12. Insensitive people (bosses, educational professionals, family members, coworkers, nurses, doctors).
13. Having to learn about the risk vs. benefits of the bovine patch vs. synthetic patch, wondering what your chances will be of actually getting mad cow
disease, and then secretly wondering if you will be prone to unexpected “mooing” and how that will affect your job situation.
14. When you are reading about the symptoms of Chiari and you realize Chiari has “friends” which frequently like to come along to the dysfunctional party that is your body, such as syringomyelia, Ehlers Danlos Syndrome (EDS), dysautonomia, tethered cord syndrome (TCS), congenital scoliosis, Klippel-Feil Syndrome (KFS), Irritable Bowel Syndrome (IBS), to name just a few. Then you wonder to yourself, “Am I just looking for more things to be wrong with me?” And you think to yourself again, “Maybe I really am a hypochondriac?”
15. People who think exercise, nutrition and supplements are the only treatment needed for Chiari.
16. Sudden changes in the weather and the realization you now track barometric pressure and weather forecasts in order to plan you pain
medication and activity level for the week.
17. Having “the spins” without the benefit of a few glasses of wine, beer or other adult beverage.
18. The sheer sense panic that comes over you on a major “brain fog day” when your boss decides to ask you a direct question during a meeting and you have no idea what he is talking about. You can barely form a sentence so you pretend to go into a coughing fit in order to save your job.
19. Never having enough paid time off to cover your sick days (bad symptom days), doctor’s appointments, medical procedures and still be able to take a real vacation.
20. Swallowing a drink of water or bite of food without choking on it all of the time.
21. Trying everything from massage therapy, essential oils, reiki energy therapy, electronic tens units, botox injections, nerve blocks and chiropractic adjustments in an attempt to relieve your chronic neck and back pain so you are able to function like a “neurotypical” human being.
22. Sleep apnea (obstructive and central).
23. Not being able to decide if it is it a hot compress kind of headache or a cold compress kind of headache, so you grab an ice pack from the freezer and also a heating pad and take both to bed with you in order to minimize any necessary movement and exposure to light until the pain passes.
24. Going from chronic fatigue during the day to insomnia that same night.
25. Perfecting the art of tripping over absolutely nothing and saying to others, “Don’t follow me, because I run into walls!” in a joking manner, but also being dead serious.
26. Sitting for long periods of time which requires you to wear compression stockings and/or secretly perform “toe and foot circles” under the conference room table in a effort to keep your feet from falling to sleep and going completely numb.
27. Having to plan for fun by allowing for “respite time” before and after especially busy days or special events.
28. Having a somewhat desperate and innate need for others to understand, just a little bit, of how having Chiari affects you, your family
and your everyday existence on this planet. Then having the sad realization most people will never “get it” unless they experience it first hand.
29. Going from multiple online support groups to zero because you just can’t handle the sadness and drama that seem to go along with rare and chronic illness discussions. Then rejoining said online support groups, because you miss having people in your life who “understand.”
30. Trying to teach others how to say Chiari. It’s pronounced “key-AR-ee” everyone!
31. Getting people to realize our brains are just too big for our skulls.