Hi everyone,
I am new here. I had my decompression surgery October 25, 2012 and have yet to return to work. Recently I began to wake up every morning with headaches that feel like someone is stepping on the back of my head. They continue almost the entire day. Does anyone have any suggestions?
Hi Rhian,
I am pretty new here also. I have. Chiari but as of now I am waiting too see if I am a candidate for decompression. I have my second appt with NS next week, in fact. Just wanted to say I can relate to your post because that’s exactly how my head feels when I wake up many mornings. I am so sorry to hear this is happening to you now post-op. 
How have you been doing otherwise? I assume since you aren’t back to work yet, it’s been a tough recovery? Hopefully the more veteran folks on here can give you some good advice and direction. Take care. 
Have you had a post-op CINE MRI?
Rhian, I agree with Anglyn- post op cine MRI. Do you have swelling to the back of your head or neck? Pockets of fluid?
Jenn
Also, have you been evaluated for Cervical Instability and also EDS, because that can cause post-op problems or failure if that's not fixed as well
I have not been tested for EDS. How do I ask for that test? No one has even thought to ask. I have had a bunch of post op MRIs, and I have some residual swelling in my brain.
Elhers Danlos Syndrome is the same thing as hypermobility syndrome. There is a genetic test to prove it, but it’s very expensive. From what I understand the alternative standard is the Brighton Test and the Beighton test. Google it and do the tests on yourself. If it comes up for you, there is a possibility that you could have cranio cervical instability. I think you are still pretty new post op, meaning I think you are still healing and changing, but if things continue on as they are you’ve got some things to check. It has been estimated by dr Henderson that 30-40% of decompressions fail because of the cervico cranial instability.
I hope your noggin heals out of the stage you are in now,
Jenn