Chiari Malformation and NUCCA

19/01/2021

“Wherever you are and whatever you do, be in love.” – Rumi

I hope everyone is hanging in there through all of this chaos and transition! All the best to you guys!

07/08/2019

I hope everyone is feeling stable and happy! It's been a while since I've posted...life, right? I was wondering if anyone in our community has an autoimmune issue, such as Sjögrens, RA, MS?

I don't tend to linger on autoimmune disease, as I feel it lessens and worsens depending on stress, diet, rest, emotional state, etc., but my bloodwork has been indicating since 2013 that I have Sjögren's - something that I didn't really feel too much physiologically. Until now. Symptoms overlap, of course, so when I think my brain fog/cotton head/inability to think clearly/super fatigue/blurry vision comes only from herniated cerebellar tonsils and the result of crowded brain stem components, it may not be the only factor contributing.

Just curious. What do you all have to say? I'm researching correlation or autoimmune issues triggering tonsil herniation.

31/10/2018

I have an important new project.
It's called PROJECT CM 1.

My goal is to gather stories from individuals living with Chiari Malformation Type 1 (adult onset) and publish our stories with the hope of helping people understand this condition by reading how we all live our days, what happened around the time of symptom onset, etc.

I can offer payment for your contribution (albeit somewhat minimal) and your first name and location will be included with your story (or you can be anonymous). When you email me with your filled out PDF, I will be in touch about payment.

I ask everyone here on this FB page to please help me shed light on CM 1 and be a part of this amazing book!

PROJECT CM 1

20/10/2018

Ok, here's a second question for you all: When you look at your x-ray or MRI, is your cervical spine atypical? See mine from my MRI... thanks everyone for you input!

17/10/2018

Ok, this is going to be a seemingly strange request (and feel free to private message me with your findings), but I have a question for you all as part of my on-going data collection quest: When you run your fingers over your skull, do you all have many bumps, waves or other things that may be considered atypical anatomy for humans? Now I realize this more than likely doesn't have any connection with adult onset Chiari symptoms, but I'm still really curious!

I'll start it off: my skull is undulatory in my occipital region and the hind ends of the parietal and temporal areas, and I have light waves all over. See image for reference.

Thanks for your input, everyone - hope you all are feeling happy, comfortable and good :)

26/09/2018

I'm sorry I haven't posted anything in a while here, so I hope all of you are in really good places emotionally, mentally and physically.

Wanted to remind everyone that there is wisdom in crisis and to always forgive yourself (your body, because of the pain but also your soul). Send love to your body even though you may feel angry at it, or just plain sad and frustrated. And, laugh. It's wonderful to brighten the gloomiest of situations.

28/05/2018

"The healer you have been looking for is your own courage to know and love yourself completely."

This couldn't be more on point when living with chronic pain or a combination of multitude other little things every day. Take time for yourself, meditate with love, move through the world with patience and joy and especially: fall in love with yourself every morning.

Hope you all are feeling great and enjoying spring!

06/04/2018

Hello everyone, I hope Spring is treating you all very well!

I want to invite you all to take my (completely anonymous) Chiari Type 1 Health Survey. I'm working on a medical anthropology degree and the purpose of this important survey is to gather correlative data regarding Chiari Type 1 symptom onset. I am conducting this research in order to uncover the reasons - physiologically, emotionally and mentally - specifically pertaining to symptom onset with the goal being to publish results to our community and hopefully gather evidence to help others make appropriate decisions about their health.

Please help me with this great project! And, if you do take the survey and find something amiss, let me know :)

Here is the link:

Chiari Type 1 Survey

13/03/2018

Hi everyone - I hope you all are feeling well and excited for Spring! I've written a short post on my Chiari and NUCCA forum section on the website about crisis. Have a short read and I hope it inspires :D

The various crises in our lives can manifest in multitudinous ways, showing itself in many forms, such as a health issue, a financial problem, betrayal of a lov...

18/02/2018

I haven't posted in a while here, so I hope everyone is well and healthy. I saw this today and it literally made me cry - it just reminds me that we're all connected not only in this world and beyond, but that we with Chiari can support each other and bolster spirits through very tough times.

From Anonymous:
"I have been a member since 1998 or so. I had my first decompression in 1992 when I was 34. I had 3 kids at that time ranging from 5 to 14! I did well for many years. In 2000, my headaches were back and my balance was off. I saw a different neurosurgeon who said that I had a good decompression he thought that it wasn’t enough because my tonsils were blocking flow. He did a second decompression and cauterized a small portion of the tonsils.

Unfortunately, I had complications after the surgery and it has not helped and I now have double vision and balance problems and am disabled. I found out in 2014 that I also have Ehlers Danlos Syndrome. And my decompressions should of been done a bit different. There is so much more known now about Chiari and the associated disorders that go with it.

I wish now that I had not done the second decompression done because of the complications that have left me disabled. But there is nothing to do but go forward."

Everyone keep their chins up and remember we're not alone. Far from it.

05/10/2017

There's been some conversations differing from the usual surgery- and pharmaceutical-based discussions on the World Arnold Chiari Malformation Association forum and it makes me feel good to read it!

Great stuff coming from people such as affirmations of healthy behavior, non-surgery symptom relief and anti-pharmaceutical talk. What a refreshing change and I welcome it! We all need to focus our intent on positivity and compassion, helping ourselves and others. There are physiological and emotional paths towards symptom relief -
we just need to find the things our bodies want (be it diet, exercise, meditation, etc.) to regain balance. Balance is a state our bodies WANT to be in.