Craniocervical Instability Fund

Keeping the heads on

Alexandra Schneider

Who am I?

Hi, I’m Alexandra, I’m 34 years old and I’m born and raised in Germany. I was diagnosed with CCI and AAI back in November 2020 by a neurosurgeon. 

I was sporty, I liked running, trampoline jumping, fitness, but I can’t do it anymore. I’m currently working 35 hours a week and I’m trying to do household work as much as I can tolerate. 

How I got diagnosed

As I just mentioned, I got diagnosed in November 2020.  All doctors I’d seen told me they couldn’t see anything wrong and my cervical spine and they said it wasn’t causing my symptoms. The ENT doctor diagnosed me with post-traumatic vertigo and the neurologist not only accepted this diagnosis, but also treated me for positional vertigo by performing a specific maneuver. After that I was doing so bad, I felt terrible! I thought my head would explode, I was nauseous and I could hardly stand… 

Eventually I got diagnosed with CCI and AAI by Dr. Marcus Grad, a neurosurgeon. I don’t have EDS.

How my CCI started

I was in a car accident on May 14, 2018. A woman drove into my right side at high speed when I was about to turn left. The impact left my car standing on its side. 

My symptoms

I get dizziness when laying on my back and on my left side. Muscle pain all over the place, headaches, feeling of not being able to hold my head, numbness in my right arm, numbness in my fingers when holding my mobile phone, numbness in my feet, back pain, mucus in my throat, difficulty swallowing, burning in the lungs with coughing and inflamed foot tendons. I also have CMD, difficulty finding words, memory problems, less concentration than before unless the topic interests me, allergies and intolerances as well.

Treatment for my CCI

Arlen’s Atlas Therapy made me much more stable than before and many symptoms only come back when I am off medicine. I got a jaw splint in order to improve my bite, which makes my atlas holding the adjustment better. The Janda short foot exercise helped me with my feet position which also helps holding my correction. I’m also using antihistamine for the mucus in my throat and cortisone spray for my lungs. Kuklinski’s NME’s also improved me a lot.

My life now

Jogging, running, hopping and jumping, jumping on the trampoline is unfortunately not possible anymore and I’m not allowed to do fitness anymore.  Carrying heavy things isn’t possible anymore either. Another thing that’s getting hard is the dentist; I can’t lay in the dentist chair anymore.

I try to read books. I write fan fiction which gives me some distraction. I don’t always have the energy for it, but if I feel like doing it, it works.

My husband supports me a lot. He takes me to my treatments or other doctors who are further from home. My friends support me as well which is awesome. I have a friend who’s a doctor and she is very interested in this area. Unfortunately, some people said “it’s just a whiplash and it will go away in two weeks”, but I have nothing to do with these people anymore as they weren’t supportive at all. 

Last year, after I got fired by my boss because of Covid, I’ve realized I simply can’t work 40 hours a week. My nerves were always very tense and I always wanted to do my best, but this was no longer possible. Currently I’m still working and I try to work 35 hours a week, in the evenings I cook for me and my husband and I try to run our household as much as I can.