Chiari Online Support Group

Old symptom has become concerning

Hi all,
I’m new to the forum but not to my Chiari. I’ve been diagnosed since I was about 3, I’m 21 now, but my symptoms only started when I was 16. Started with the tremor and headaches (people asked if I had parkinson’s it was so bad). Took topamax for a while but stopped because it wasn’t doing much for me. I’ve had too many MRI’s to count and I see a Neurologist and NS at least once a year.

Recently one of my symptoms has gotten worse and has me very concerned. A few years ago when I would crack my neck I would feel a little tingle in my toes. Talked to my NS about it and he said just quit cracking my neck. That’s easier said than done. This sensation either went away or I became used to it. But within the past month this tingle has turned into a much more intense sensation. It feels like a ripple goes through my body where each nerve is being pricked. It has only happened twice because the first time scared me so much and the second time I did out of habit and really regretted it. I’m terrified one day I’ll crack my neck out of habit and paralyze myself. That is probably very unlikely but my anxiety has me convinced it could happen

So I was just wondering if anyone else had experienced this and maybe talked to their doctors about it?

I am going to schedule an appointment with my Neurologist on Monday but there’s no telling how long it will take me to actually see them so I thought I’d turn here for advice/possible answers. I already know I should stop cracking my neck, I’m working on it but old habits die hard, any and all advice other than that would be greatly appreciated.

Thank you in advance for any information you provide

I have/had something similar with neck movement, both before and after surgery. It turns out that my brain is not processing sensory input correctly and would turn simple neck movement into a radiating pain down my spine and/or into my left shoulder (plus right hand and foot problems when worse). It would make no anatomical nor cervical joint sense and many doctors and physical therapists kindly and not so kindly indicated psychological concerns or plain making it up.

Fortunately, I found a great physical therapy regime to reprogramme my brain to perceive and process input correctly. Assessment, (or in my case “give it a shot as nothing else is working)!” is important as something else could be going on for yourself. It is a slow process but is improving when all I was doing was getting worse with neck movement. Chiari puts much stress on the brain and it can do only so much in processing all that compression to the spinal cord and cerebellum. New brain research is great!

Thank you, gabby! I really appreciate the advice. I am going to take my concerns to my neurologist but if they have nothing helpful to say I will definitely try out physical therapy.