Like most of us, when my symptoms started, I felt very alone. I was blessed to have family and friends that helped me through and cheered me on, but there was a part of the fight that only those directly going through it can understand. At that time, online support groups were far from what they are now. The support groups have definitely improved, but there is still so much more that we need. We need knowledge of the studies that are already out there! We need hope for the future! We need training in self-advocacy! We need help in trying to get our bodies and minds as healthy as we possibly can, because like it or not, things can get much worse than they already are. It was from our desire to help meet those needs, that the Chiari Bridges vision began!
Empowering With Knowledge!
Chiari Bridges aims to challenge everything we have been taught about Chiari and its comorbid conditions, and write about them in a way that makes them easier to understand. Although, because we know how hard it can be to get our doctors to listen to us, we will do everything we can to supply the studies behind the facts that we write about (that is why our citations are in red, so they are not overlooked). Knowledge is power! Once we as a community have a better understanding of all that is likely to be going on in our bodies, we can arm ourselves with the studies and take them to our doctors and show them the standard of professional knowledge that we expect! The bar has to be raised, for our radiologists and doctors alike, and they are not going to raise the bar for themselves. We have to inspire them to do that and we are going to raise the roof until they do!
Raising Our Bar!
One of the biggest problems we see amongst Chiarians is that our broken bodies have degraded our spirits and our 
confidence. It is time for us to learn to believe in ourselves once again! The doctors that we were taught to respect, got their knowledge by studying. And many have dropped the ball in their studying, yet they continue to operate on our brains, answer our questions with wrong answers, and deny our symptoms, knowing that they are not knowledgeable at all of our condition and its comorbidities. They like to “act” like we are crazy enough to think that we could wrap our brains around medical concepts that their narcissistic disorders incline them to believe that only medical professionals could understand. Well, they truly have underestimated the reality of all that our big brains can truly accomplish! We cannot let their ineptitude become ours, because it is our brains on the line, not theirs! We plan on creating a venue to share about our doctors, the good and the bad, in a way that decreases the potential for legal liability. We have a right to share our experiences – we just need to do it in the right way.
Encouraging Hopes and Dreams!
When it comes to conditions such as ours, the first things to come under attack is our hopes and dreams for the future. Even when we start out being hopeful (often because our doctors understate the significance of what has happened to our bodies), by the time we are decompressed and we find that we are still symptomatic, those hopes and dreams quickly diminish. I have been quoted as saying, “If Chiari has stolen your dreams, dream again!” I still believe that and have been in a constant state of having to practice it. We may not be what we originally wanted to 
be, but if we continue to see all that we can do and not just what we cannot do, we can dare to dream again! We are all multifaceted human beings with broad gifts and talents. We might not be the athletes we once aspired to be, but that says nothing of our strength. We all have the potential to change the world around us! You might be an artist that hasn’t practiced your art in years – start practicing again! You might have always thought about writing books, but because of your diminished hope for the future, you haven’t written in years – pick up a pen and start writing again! The only way to ever know your true potential is to try and try again! Dare to dream again!
Helping Chiarians Thrive!
While I cannot go into much detail on this topic right now, we do have plans in the works to help encourage Chiarians to gain back a sense of control and live out their passions. Some have already started, as we aim to encourage help with self-advocacy, health and fitness, political lobbying awareness, and the like. But we also plan on encouraging Chiarians to start those businesses that have been on their hearts for so long (not multi-level marketing ploys either, but authentic, heart-inspired, creative businesses), and helping get the word out that it is Chiari owned. We as a community can accomplish so much more, but we need to work together to do it, and start applauding one another instead of tearing one another down! We all need a new chapter in our lives, where we overcome and succeed in the things planted in our hearts!
Passion and Motivation to Create Change in Our Community!
When we first embarked on building this bridge, I realized that my vision was much bigger than my ability to do it alone. Therefore, I sought out certain people within the community that were passionate about specific aspects that can help our community as a whole. Some loved the idea and still serve on the Chiari Bridges team. Some are on the team and just starting to give birth to all that is in their hearts to accomplish. (I absolutely love fresh ideas and fanning the flame until they happen!) Not everyone loved the idea though. Some saw it as a threat to their own projects. They mocked me and one called me “&*%@ing crazy” (she had no idea how right she was). Instead of taking us up on the offer, she made every attempt to try to stop us, and she and her friends have been reporting every image that we use and claiming it as their images. (Good luck with that!) If wanting to create change makes me crazy, I will gladly wear the crown! Let them talk and let’s do this anyway! While they are busy gossiping, we see an increase in Chiarians losing their battles every year. Last year, two of my good friends ended their fight. That’s two too many! We have no desire to compete with anyone or any other non-profits, especially the ones that serve to try and benefit (and not exploit) our community (that childishness has only served to hurt our community). We actually want to cheer on those organizations, individuals and groups in what they are doing and do all we can to help generate support in their efforts. There really is enough need in our community for them to do what is in their hearts to do and still be active and true to what is in our hearts to do. If you have passion and motivation, and just need an outlet or help doing it, tell us about it. It takes a village working together to bring about change!
Oh, and by the way, our vision for change is global! Our bar is not low. We aim to change the world and want to connect with those who desire the same!
Michelle Cole
President, Chiari Bridges, Inc.
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Pain from a Chiari headache can be brought on from the simplest of things – a sneeze, a cough, laughter, or bearing down when going to the bathroom. We never know when the headache is going to strike, how long it will last, or when it will end. We are unable to describe the intensity of the pain to others, and when asked to rate our pain on a scale of 1 – 10, we want to scream, “14!” The radiating, crushing pain of the headaches robs us of our ability to function for days on end. And depending on the extent of damage the Chiari has caused you may also have the burning, stabbing, and shooting involved with neuropathic pain and neuralgia. The frosting on the pain cake, perhaps? With the many co-morbid disorders that go hand in hand with Chiari, such as Ehlers-Danlos Syndrome, Intracranial Hypertension, Hydrocephalus, and Tethered Cord Syndrome, is it any wonder we cry out, “Make it stop!”?
By a wide margin, the hardest part of our fight is dealing with doctors. One would think it would be the never-ending pain, but when your doctors do not believe you, ridicule you, or outright verbally abuse you, it not only adds insult to injury, but it probably illustrates reasons that your doctor(s) just might be the ones that need counseling. As patients, we are paying for them to help us with our medical problems; what we get instead is usually a referral to a therapist because of their ineptitude. The absurd part of this circle of insanity is that when we make ourselves more knowledgeable about our condition(s), because we have no other choice, a doctor that understand the Hippocratic Oath would respond by making themselves more knowledgeable as well, so they can help their patients. Yet, what is far too common are doctors that do not want to know the results of studies, who are complacent with their fifteen minutes of Chiari education, and think if they talk a good game, patients can be manipulated into thinking maybe it’s all in their minds.
In a distant second, would have to be the heart-wrenching feeling we get when our loved ones put more stock in the opinions of our morally bankrupt doctors, even once we have shared study after study and article after article showing you that our doctors are wrong. What we go through, feeling like our bodies have betrayed us, knowing that our doctors have betrayed us (even if it is because they do not know any better), we need you in our corner. This is the fight of our lives, for our lives, and we should never have to do it alone! The energetic, feisty, loving person that you have loved so much over the years is still inside of us! When your brain falls into your 
(apparently, they do not know the importance of the Central Nervous System either). Although benefits can still be fought for and awarded, the fight becomes far more difficult than it needs to be. Chiarians often must fight for years, filing appeal after appeal, to prove that their reality is the reality.
One of the biggest hurdles a Chiari patient may face is that of simply being diagnosed. Some studies cite an average of 5 years between the onset of symptoms significant enough for a patient to seek medical care and the patient receiving an accurate diagnosis of Chiari Malformation. Sadly, however, online support groups and message boards are peppered with the stories of patients who went undiagnosed, or more often, misdiagnosed, for decades. Patients are frequently misdiagnosed with conditions such as Fibromyalgia, Multiple Sclerosis, Chronic Fatigue Syndrome, Chronic Migraine, and various autoimmune disorders. Even more disturbing is the fact that in a study by Dr. Thomas Milhorat of over 300 patients diagnosed with Chiari, 59% had been diagnosed with a psychosomatic illness.
Diagnosis of Chiari Malformation is based upon the presence of Chiari symptoms, such as an occipital headache that is brought about or worsened by Valsalva maneuvers, neurological symptoms such as poor balance, numbness or tingling in the arms, weakness in the legs, etc. combined with the “gold standard” of imaging studies for Chiari, an MRI of the brain.
becoming apparent that Chiari is not quite as rare as it was once thought to be. When a primary care physician is stumped by a patient’s complaints of headaches and neurological symptoms, it is only natural to refer that patient to a neurologist for evaluation. But even many neurologists are grossly uninformed about Chiari. Many patients, even with an MRI that shows a herniation, are told that their many varied symptoms can’t possibly be due to the herniation of their brain, even with numerous studies available which show otherwise. Some patients have even been told by neurologists and even neurosurgeons that “Chiari doesn’t cause headaches [pain].” In fact, most symptomatic patients experience severe headaches, nerve pain, and pain from related disorders such as Syringomyelia.
Once diagnosed, you will usually be referred to a specialist (not a Chiari Specialist, but an everyday, run-of-the-mill neurologist or neurosurgeon). They tend to come in one of two types: Either they are very passive and just want to wait and see how bad it gets, or they are very pro-surgery and while they will still usually give you a 50% chance of helping your symptoms, they will tell you how decompression surgery really is your best option. Both are problematic.
