I am very happy to welcome you here on my website about cranio-cervical instability/ cervical spine instability. The reason I set up this website is simple. I have been suffering from multiple instabilities of my cervical spine for a couple of years now. Research on the internet, communication with other patients and a never ending doctor-odyssey is part of our lives. In essence, all of our stories sound similar. Until the final diagnosis it usually takes years, many people end up with a psychologist, nobody believes us, and on images there is no pathology to detect. Thats how most of our days look like. Out of my frustration I wanted to create something useful here. A page which contains all the information about cranio-cervical instability on the web; a site where people worldwide can talk about helpful therapies or clinics in a password protected area; a site where we can try to get more public attention for a supposedly non-existent condition.
Since 2014 I know the reason for my cervical spine instabilities and all the other instabilities that occurred over the last years. I am suffering from Ehlers-Danlos syndrome. Through this diagnosis another gap in Germany showed up. EDS and cervical spine instabilities together seem to be very unknown here, which is why I have another very important topic: EDS and all the comorbidities it comes along with. That is why there are more EDS publications than publications about other causes on my website. Sadly almost nobody knows what EDS is and that it frequently occurs together with cervical spine instabilities.
Cervical spine instabilities have many different causes and this website should be a resource for everyone, no matter if you are suffering from an underlying disease or had a car accident. I am offering information about all kinds of topics and would be very happy if someone wants to pass on a good article or publication to me.
Due to health issues I am not able to be up to date on all topics and my main interest is still in Ehlers-Danlos syndrome.
Please do not hesitate to send me Links or tell me what you are missing here and want me to cover on my website. If you look around you will notice that the main information are in general about CCI. Under “Causes/Symptoms” you can find all the different causes for CCI. Also if you have a look at “for beginners” you will find mixed infos about cervical spine instability and EDS.
I want to create something positive out of the hopelessness which accompanied all of us. I believe that together we can move something. I would like to build an interactive community.
Do not hestitate to write me about any kind of experiences, concerns, questions or informations. I really appreciate that.
I try to give as much information as I can, which are scientifically sound (sometimes that doesn’t work through a lack of publications on some topics).
This site is operated by me, a patient that suffers from EDS and CCI and for people suffering from cranio-cervical instability. I am dedicated to help and share things with you. But it is in no way a substitute for a medical consultation or medical advice. I am not a medical doctor (or any other doctor)! We collect ideas to make our diseases more popular and better known. However, all this is of course at your own risk. There is no therapy which helps everyone. Furthermore, I am not doing this for any commercial purpose and all content is derived from my personal experience.
This site is independent and not affiliated with any organization. I am running this site out of my own motivation because I think those rare diseases need a lot more awareness and every voice counts – even mine 🙂
My personal story you can find here: Experiences
I also created a Facebook site.
Have fun and enjoy reading!