I got big brains and I cannot lie.

This page is specifically for all my fellow Chiari Malformation warriors and those seeking Chiari support, Chiari information, and techniques I have used myself to help manage my chronic pain.

At 25 I was living a full life in Chicago. My social and professional life was flourishing, and I had found my groove. Exercise, diet, and wellbeing were at the forefront of my life and I had it all. Then one day I remember being at work and my co-worker had (kindly) mentioned I looked a little off. Within five minutes I had lost the ability to speak, lost all motor control, was completely disoriented and confused, and terrified. Being immediately seen for an expected stroke was a blessing, as my doctor was able to diagnose me with a Chiari Malformation level 1 almost immediately. Many patients go years without a proper diagnosis, even being told that their pain is ‘all in their head’ (no pun intended).

Defining Chiari is like going down a rabbit hole. Although the structural anomaly is a constant, the symptoms vary so much. There is no known correlation between cerebellar herniation size and symptoms and pain. When I was initially diagnosed my herniation size was 8 mm. My most recent MRI shows a change to 14 mm. My symptoms would come and go, some days are ok and some days I feel like my head is going to explode.

Late 2019 saw a significant upswing in my direct pain levels. I was losing the ability to concentrate, my patience was running thin, and my quality of life was decreasing. I sought out new medical advice and came across an Osteopath. I spent thousands of dollars out of pocket seeing an Osteopath once a week for months. Whenever I would receive treatment I would have severe reactions within the following few hours; slurred speech, extreme headache, and loss of balance. I continued to receive treatment because I thought I had to work thru the ‘bad stuff'. Long story short (too late) I stopped treatment with the Osteopath and sought out a new neurologist. Wether the universe just took pity on me or I just happened to find a doctor who understood me I will never know. Starting occipital nerve blocks was a GAME CHANGER in my experience, I had never even been offered them in years prior.

Over the history of my diagnosis I had implemented all different kinds of natural self care. The ones that have made me feel better are:

*neutral baths loaded with magnesium in the form of epsom salt

*flotation tanks (deprivation tanks)

*Ice packs on the base of the neck and back of the head

*self massage and self trigger point therapy

*contrast showers

*postural corrections

*daily cervical stretching (bi-lateral flexion only) and cervical retraction exercises

Now here is the thing: what works for me may not work for anther Chiari warrior, and what works for others may not work for me. I have personally chosen to not go the route of decompression surgery but it is always something on my radar, knowing it is something I will have to consider down he road. The amount of information I have researched is insane, but I believe the more you can educate yourself the better you can make a decision.

One of the biggest lessons I have learned is you have to be your own medical advocate. Having the correct team that listens to you and your concerns is imperative to you care. You are the only person who will care for yourself properly, find your voice. Do your research. Know that you are not alone but you will have to validate your own feelings and experience.

Conquering Chiari A Patients Guide to Chiari Malformation has been the only patient guide I can find that is specifically written for us, the patient. I highly recommend it for further information and resources.

Power on Chiari Warrior, and keep being a bada**.