August 5, 2019: One Week Post Op Appointment with Dr. Blake

*as with my appointment with the surgeon, I am writing this based on memory and my understanding*

I also had my post-op appointment with my neurologist today. She said Dr. Perry told her that things went very well. We went over things I should expect the coming months.

-        - Nerves heal significantly slower than bones. So be patient with myself and my body.

-        - Reduction of headaches can take weeks to months. So do not expect to go forward completely pain free. The nerves need to heal. Immediately after surgery pain decreases because of the pain pump but also because when nerves are operated on/are touched/are moved they shut down because they don’t like to be handled (that’s why the back of my head is completely numb), but this decrease in pain in artificial. As the numbness wears off but the nerves are not yet healed, the return of pre-op pain will return. Then there will be a gradual reduction over the following weeks which represents true healing.

-        - Pain to expect is incisional pain, muscle pain from tightness and spasm and from being cut through, then paresthesia.  You know that feeling you get when your foot falls sleep and then wakes up and you get tingles, pins and needles? This is the nerve responding to the bloodflow resuming and will indicate the nerve is starting to heal normally. I should start feeling this in the next few days as this is a healthy sign that the nerves are starting to recover.

-        - Dr. Perry explained the need to do regular scalp massage, and Dr. Blake explained this retrains my sensory nerves how to feel normal sensation and not just pain.

-        - She said normally it takes about 3 months for a person to feel a reduction in headaches, but full healing takes over a year.

-        - “Flare ups” can and will still happen from muscle engagement and stress as stress is found to be directly related to increasing inflammation. She again explained the importance of stress reduction. 

This graph shows my pain pre-op and how it dropped significantly after surgery. As those nerves heal the pain will return but slowly decreases over time. There are humps present as things like muscle engagement or stress happen and cause a flare-up. Over the next year pain will continue to return, but each time the severity of pain is a little less.

I asked her again if its possible that I have Occipital Neuralgia AND migraines. She said she doesn’t know yet, and we can only find out over time. We will do what we can to control the ON and then see what remains. She actually recently published an article called Emerging Evidence of Occipital Nerve Compression in Unremitting Head and Neck Pain which talked about the pathophysiology of how the situation happening on the outside of the head and neck can be associated with triggering migraine-like headaches. There is a connection between the nerves on the outside of the head and on the inside of the head. Anyways, it is super interesting and shows why lots of people like me think/are diagnosed with migraines because lots of the symptoms look like a typical migraine, however the actual issue is the nerves outside of the head. Once again, I am in absolute disbelief that out of the thousands of neurologists out there, I ended up in the office of one who is passionate about this area of headaches and actively doing research to better understand and look a new way of thinking about and treating headaches.

https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-019-1023-y or https://pubmed.ncbi.nlm.nih.gov/31266456/ if you’re interested in reading her article.