Cerebellar Tonsillar Ectopia

[thebirthoflove]

Good morning, everyone!

Up until recently, I have been a fully-functioning/coping professional. I have always struggled with migraines and what I have called "pressure headaches," because they seem to be aggravated by changes in the barometric pressure. I have always suffered with severe fatigue and muscle aches and weakness. In my childhood and teens, I suffered from heat intolerance (now it's cold intolerance). In my late teens/early 20's, I developed severe spasms and pain in my neck and shoulders. I have been fully worked up from a hematological standpoint and my only ongoing issues are iron-deficiency anemia and B12 deficiency, but both of those are stable right now.

I am 39 now. In January, I developed severe neck pain and spasm, radiating down into my left shoulder, arm and hand. I had numbness and tingling in the left hand and fingers. My PCP ordered an x-ray and it showed degenerative changes. She prescribed steroids and muscle relaxers. A week after I finished the course of steroids, I noticed I felt dizzy and light-headed even when sitting still, but especially with quicker movements of my head and body. I woke up one night to use the restroom and felt like I had lost all sense of balance. I staggered to the right and caught myself with the wall.

I went to the ER. Long story short...I was admitted. I had a CT of the brain (negative), CT angiogram (negative), MRI brain without contrast (negative), MRI neck (degenerative changes of lower C-spine), echocardiogram (negative) and a vestibular workup for BPPV. I was discharged to home. I was recommended to use a walker and have physical therapy at home by a vestibular/balance specialist. I saw a neurologist who seemed to think this was an ENT problem. He ordered an MRI WITH contrast of the IACs and brain and wanted me to see an ENT.

The ENT has ordered computerized vestibular/balance testing. The MRI came back completely NORMAL except for mention of "mild cerebellar tonsillar ectopia."

I am a nurse by trade and relatively mobile and I have been out on disability while going through all of this craziness. I googled "mild cerebellar tonsillar ectopia" and ultimately, that led me to you. I have consulted a neurosurgeon on my own accord to try to find out if this could explain what is going on with me. I am questioning if all of these symptoms I have had all of my life that I thought were just my "normal" were actually indicative of this issue and the current acute issues I am having with my balance are an extension of this possible condition. I would appreciate any thoughts you all might have. This has really been a challenging and scary time for me and my family!

[selmaS]

Hi and welcome to the Chiari forum.

I remember being as confused about my diagnosis of Chiari.

Now I said Chiari even though you were told mild cerebellar tonsillar ectopia, it's possible you have acquired Chiari or just Chiari....how mild depends on your symptoms, I really dislike them using terms like that to express what they consider mild  etc....

Next to discuss symptoms that seem to have come up out of nowhere....I was 49 when I had surgery, and older when I was diagnosed...BUT when I was younger I was not aware how I felt was due to a symptom because I always felt that way and didn't know it wasn't "normal".

What you need to do next is find out what other related conditions you might have as well. Educate yourself on all of them and then research CHiari specialists....knowing what they should be looking at you for, will help you know when you have the right Dr for you.

Syringomyelia, POTS are two I would suggest you have ruled out as they can cause some of what you described. You will also want a CINE MRI to check CSF flow.

I hope this helps.