Question
 

Hello,

I have a question for the community.
I have been experiencing severe headaches for the last four years. They present at the back of my head and neck - occasionally on the top of my head. They mostly occur during the night and get better as the day progresses only to return the next night. I also have this crazy hum in my head and a burning pain in my upper back (along my spine).

All my MRI's have been okay except for one notation from the reviewing radiologist: "Cerebellum tonsils are low-lying but not frankly ectopic."
I have seen three neurologists who have said that this notation is not a big deal and this situation could not be causing my headaches.

Any thoughts?

Hi Dawn,

I do not know much about CHiari but you might also want to investigate TOS (Thoracic Outlet Syndrome) or a cervical retrolithesis/subluxation. I happen to have both and I have the hedaches and buring at the spine.

In Chiari the CSF fluid is not allowed to "percolate" properly around the spine- the tonsils keep it from flowing. If your tonsils are not low enough to present a problem, I would search elsewhere. There definately is a problem if you are having headaches, we just need to find out what is causing them. Press your doctor to see what could be the problem. Keep a "headache diary". Write down the date, the time of headace, what you were doing, what you ate that day, pain level, what you did to ease the pain, and when it went away- if it did. Take this info to your doctor the next time you go and keep it up until someone sees there is a problem! This is how my pediatrician found my daughter's Chiari and she said this was the information needed to help determine exactly what was wrong.

Hope this helps,
Deb