After years of having our symptoms dismissed, having our pleas for help and understanding seemingly fall on deaf ears by our doctors (and many times our friends and family as well), it can be a relief to finally have a name for what has gone so horribly wrong with us. The relief is short-lived however, as we begin to realize the full scope of all that is really wrong with us. Although surgery can be extremely successful for some, many of us are left with some degree of symptoms or complications to deal with. For those of us who also have a connective tissue disorder, such as Ehlers-Danlos Syndrome (EDS), the issues with our tissues can seem endless. The thought of “getting healthier” can seem like a daunting task. We do not have control over every aspect of our health, or every aspect of our fight, but we are not powerless! We do have control over some lifestyle choices, that can help improve our day-to-day lives.
MAINTAIN A POSITIVE ATTITUDE:
The single most important item within our control is our attitude! We don’t have to ignore our reality or turn a blind eye to the negative aspects of our conditions to have a positive attitude. We can choose to frame things in a positive light. For example, if I am no longer able to walk as far as I could this time last year, I can look upon that situation with an air of defeat… or I can remind myself that I was also unable to walk that far three years ago, but with determination, with time I made progress! It may be unfair that I must start over again, but I am worth every ounce of effort that it takes to do so. I can acknowledge the unfairness, and then choose to focus on making progress towards my goal. A positive attitude is not going to will Chiari or EDS away, but it can improve our experience of living with these conditions.
CHOOSING FOODS WITH YOU IN MIND:
With connective tissue disorders, and the myriad of effects they can have on our bodies, eating healthfully can feel like walking through a minefield. Mast cell issues can cause sudden or intermittent allergic reactions to a wide variety of foods. Dysautonomia can require us to consume large amounts of salt (and still may end in nausea and vomiting). We are more prone to gastroparesis, gastric dumping, Irritable Bowel Syndrome (IBS), and other gastrointestinal problems that limit our food choices. Despite all these challenges, most of us can make food choices with optimum health in mind. Many EDS experts recommend eating whole, nutritionally dense foods, and taking supplements to help mitigate the vitamin and mineral deficiencies many of us are prone to, due to malabsorption. If inflammation is an issue, we can avoid dairy, sugars, refined flour, fried foods, and replace them with foods that are known to reduce inflammation, such as: salmon, blueberries, beets, broccoli, spinach, and foods cooked in turmeric, ginger, garlic, and olive oil. Most importantly, we can educate ourselves on our various conditions and what the experts on those conditions recommend, discuss this information with our own doctors and develop an individualized plan for ourselves, and apply this knowledge to our everyday life. Knowledge is key with conditions such as ours! While eating well is not going to shrink our cerebellar tonsils or cause our bodies to make collagen differently, it can help improve energy levels, and reduce pain and other symptoms.
MOVING IS ESSENTIAL TO MOBILITY:
Despite the pain and the fear, we can choose to move every day and strengthen our bodies as much as possible. Deconditioning is a real issue for many of us who have had such debilitating pain and other symptoms, that even after a successful decompression surgery, we may find ourselves unable to function normally again. And while we may never be 100% again, we usually can gradually improve our strength and endurance through a good physical therapy and exercise program. Experts agree that strong muscles help reduce many of subluxations and soft tissue injuries that are common to us. It isn’t always easy to find the motivation to get up and take a walk or to do those exercises your physical therapist assigns, but we must remind ourselves that we are worth the effort, and that even the very slightest bit of progress, is still progress. As the adage goes, “A journey of a thousand miles begins with one step.”
We encourage you to fight for better medical care, for more research, for doctors and loved ones to listen to you. But with that also comes a responsibility to do everything you can to take the best care of yourself possible. To follow your doctor’s recommendations (once you find a good one), to eat well, and to stay as active as you possibly can. But you don’t have to go this alone! If no other positive thing comes out of being diagnosed with Chiari or any of its comorbidities, we do promise you this; the Chiari community is full of amazing, inspiring, loving, encouraging people who will stand in your corner and cheer you on through all your challenges, even if no one else will. And we here at Chiari Bridges will be there along the way with tips and advice on living your best life possible with Chiari and all its ugly friends. Remember, pain is inevitable, but suffering is optional!
[wpedon id=”4396″ align=”center”]
Chronic pain is something Chiarians face on a daily basis. Disabling pain that reduces your quality of life can make once simple tasks difficult to accomplish. Things like taking a shower or cooking become incredibly challenging. Fatigue can set in quickly, that even when we have plans that we’re excited about, just getting ready for them can be enough to put us back in bed. All of this can give us an altered self-perception of feeling useless, which enhances the depression. Chronic pain is both a physical and psychological condition, thus making treatment complex and difficult. Pain can cause depression and depression causes pain; it’s a vicious cycle.
Adjusting to the new normal is always a challenge, not only for us, but the ones we love as well. The loss of our former selves and our careers is very hard. Maybe you were a full-time parent or provider, caring for your family and you find yourself the one being cared for by loved ones. You find yourself depending on family and friends to do for you things that you once did for yourself, making you feel like a burden on those you love most. You may experience a sense of helplessness when trying to get friends and family to understand what you are going through. There will be friends and family who cannot or will not try to understand. They will think you are lazy or seeking attention. We must mourn the loss of old selves, careers, sometimes family and friends, as others must mourn their loss of your former self, and learn to embrace the new you in your new normal.
churches), as well as state and federal programs. Just are few examples of help available are assistance with mortgage, rent, utilities, food, clothing, medical bills, medical insurance, free or reduced-cost prescriptions, holiday assistance, back-to-school, free or reduced-cost dental clinics, pro-bono legal help, cash assistance programs, etc.
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.![The Christopher Ellington Story – A Chiari Warrior’s Journey [Updated]](https://dev.chiaribridges.org/wp-content/uploads/2017/05/hosp1.jpg)
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.