I think I'm finally learning something about the headaches that I've been having since my 2nd decompression. There is still a ways to go - but we've got to celebrate the little stuff, right?
As a refresher, I've been having headaches that are triggered by head/neck movement and position. They are a "blunt" or "aching" pain that goes from the top of my neck to the top of my head. They are happening 3-5 times a day and are usually a 4-8 on the pain scale.
Now to the new stuff:
I had a lumbar puncture yesterday (why does nobody believe me when I tell them I need 2x the local anesthetic for it to work?). My opening pressure was completely normal. I expected this.
I had bilateral greater occipital blocks just over two weeks ago. After the pain from the procedure settled down, I noticed that I was having the same headaches, but the pain distribution only went from the top of my neck up to the bottom third of my head, where the occipital block started. So, my quality of life is a little better, but the blocks did not stop the headaches.
This makes me think that:
-the headaches are coming from my neck, not my head
-I am experiencing nerve pain, although the origin is still unknown
-it seems that the only medicine that helps my headaches is muscle relaxer, so they also must be involved somehow
-I have a bulging disc at C5-C6, but It has never really caused me problems. I had it before my 1st decompression
-The last cervical MRI I had was between my 1st and 2nd decompressions.
-I have been tested, and I do not have tethered cord
-I am wondering about craniocervical instability from the surgeries
-I am wishing that I was tested for EDS before my first surgery (It ended up being kind of an emergency situation, so I never got tested) and I am thinking that it might be good to be tested now.
I am seeing Dr. Heffez in a week and I hope that he has some good ideas about where to go from here.
Any ideas from you guys? You are the best resource of all!