“Make it stop!”

“I can’t take this pain anymore!”

How many times have you, or your loved one, cried out these very words?

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!”?

Once finally diagnosed, whether you feel like you are losing your mind, or rejoicing over finally having answers, I guarantee you, this emotional roller coaster will still prove to be the ride of your life! Even if they say your Chiari was an “incidental finding,” I can almost guarantee that when you look back in hindsight, you will see that some of the signs of Chiari or its comorbid conditions were always there and you thought they were just “normal.” If you have a history (or familial history) of headaches made worse when you cough, sneeze, laugh, flinch, strain, or bend over; neck pain; stomach aches; ankle/knee/hip/elbow problems; hypermobile joints; dislocations; scoliosis; bulging/herniated discs; miscarriages; aneurysms; numbness; muscle wasting (atrophy); vision loss; double vision; or unexplained muscle/eye spasms (and the list could go on); then they are all probably related to Chiari and its comorbidities. If you just got a new diagnosis of “Chiari Malformation,” you might feel fear, with a sigh of relief to finally have a diagnosis to go with the many symptoms you have complained about for years. Whatever you are feeling right now, be sure to take the time to breathe and take care of you, because the battle is an accumulation of long and tiring rounds and odds are, Chiari Malformation is not the only problem you have going on.

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 spinal canal and your connective tissue is wasting away, there is no measure of motivation that is going to help fix it! We need help with our battle, someone in our corner! We don’t need judgement or motivational speeches; we need love and understanding – and an occasional shoulder to cry on. We need you to help us stay grounded and remind us that despite the pain and brokenness, we still have value in this world! Without a shadow of a doubt, we really need you!

What our bodies go through from head to toe really can only be understood by remembering the importance of your Central Nervous System in everything that you do. Every nerve in your body passes through the Foramen Magnum, where the Cerebellar Tonsils invaded, and in most cases, every single one of those nerves are damaged to some degree (and some of that damage is permanent). The headaches we get when we cough, sneeze, heave (or do anything that causes a bounce or even a slight movement of our skulls), can often only be compared to the pain of childbearing – rendering the pain rating scales useless for not having the angry face reaching around and trying to rip his skull out from the base. The neck pain consists of spasms (either continuous or intermittent). For most of us with HDCT, Craniocervical Instability makes our heads constantly feel like they weigh far too much for our weak necks to support (often described as a ‘bobblehead” feeling). Some might consider the pins and needles or ice pick stabbing pains behind our eyes, in our heads (neuralgia) or in our extremities (peripheral neuropathy) to be a crushing reality of life despite surgery.

Finally, this lack of awareness, education and research makes it even more difficult for those of us who find ourselves no longer able to work. The Social Security Administration has yet to add Chiari Malformation to its list of impairments which would automatically qualify for disability benefits (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.

Is their hope? Yes!

Through it all, and despite all the challenges that face us, we are many, and together, we are powerful! We can change all of this by becoming our own advocates and by raising awareness and dollars for research and awareness information that strives to educate the medical professionals that are treating us. This is our war to fight and being the warriors that we are, we must rise to the occasion – because LOSING IS NOT AN OPTION!

 


4 comments

  1. Dealing with doctors that have so little information about Chiari really does make it intimidating sometimes. BUT, who in their right mind would tolerate that from the “professionals” that we pay to help us with our health problems. It’s a serious problem and a good doctor would encourage us to learn as much as we can.

     
  2. So great! No one is going to advocate and fight for us better then we who are living through this fight everyday. It can be discouraging at times and feel like you are running on the spot but constantly putting one foot in front of the other is what is going to help not only ourselves but this entire community.

     
  3. Very empowering! It can be a delicate battle between educating your Doctors whilst not insulting their fragile ego’s. It must be done in a way that you enlist their help and interest and not seem resistant or non compliant. Every once in a while we find the gems that would go the rounds with you, they are rare but are out there, we just need to keep digging to find one. You couldn’t be more right when you say, get ready for the ride of your life!

     
  4. Being our own advocate is so important. We know our bodies and sometimes doctors can be wrong. Fight for your health!

     

Bridges are built as a means to assist people in getting over the things that obstruct their path. We are constantly facing obstacles when it comes to our health, so we decided to build a bridge! Chiari Bridges is a non-profit network built by Chiarians for Chiarians. Our goal is to provide information, substantiated by published studies, in a way that is easy to understand. We encourage readers, to not only read our articles, but look up every study for themselves and read that too. Print it out and sit down with a highlighter; read it as many times as necessary until you understand; then use it to talk to your doctors. Our doctors are under no obligation to read our articles, but they should be willing to read officially published studies from journals, especially those specific to their profession. As many of our authors are patients as well, all authors sharing original pieces will be writing under pseudo-ghost names, to protect them from being black-listed by their doctors. Chiari Bridges is not affiliated with any physician or medical group. You should in no way use this site as a replacement for diagnosis, treatment, or medical from a qualified medical professional. The information provided on our website is strictly for educational purposes, in order to help further the understanding of Chiari, and its associated conditions. Our goal is to share our collective experiences and the information we have gathered, with those in need of answers, that it may increase your knowledge and guide you in conversations with your doctors.