Hey y’all. I am so sorry I haven’t posted an update since a few days after my surgery back on January 8th. I have been dealing with healing, over here! =)
Healing, however, is going well - while not at all linear. After spending a week in a hotel in RDU with my mom post-op, I came home to spend a week with my sibling (whom stayed with me and took care of my pets and me). Two weeks off of work, then back to work. After being back to work (I work remotely) for a week I did in fact fly from NC to CA for my company’s annual retreat (three days long, Palm Springs) like I mentioned I’d hoped to be able to do. It was difficult but not as difficult as I imagined it would be. I flew fine, I managed being in CA fine, and I flew home fine. I was VERY tired, though.
Then it was back to work as normal, continuing to heal, and resting as much as possible. I did have to go to the emergency department just a couple of weeks ago for the first time since Thanksgiving week. Pain crisis, extra swelling in the neck/face (both surgical sites). The ED doc determined no acute emergency and then focused on pain and nausea. We decided my gastroparesis flareup that had me puking multiple times a day for several weeks resulted in the sudden onset of excess swelling (that had been steadily going down) around my surgical sites, leading to the pain crisis. I was heavily medicated until my pain was managed and sent home the same night.
I have noticed DRASTIC improvement in many symptoms from the ES on my right side since surgery and this makes me look forward to getting the left side done later this year so I can hopefully be rid of the symptoms entirely. I am still getting lots of pressure in the bottom of my head/scalp, trigeminal neuralgia in both sides of my face, and jaw pain/TMJ issues as well as neck and face pain on both sides of my face. However, on the right side (surgery side) it’s clear the pain is due to healing from surgery while on the left it’s clear the pain is still from active ES. So that’s interesting. I am still dealing with symptoms from compressions on my left side - those symptoms are gone on my right side, and so on.
Doc Hackman still has me on IV steroids (dexamethasone) every 3 days and that’s been since Thanksgiving week. He does not think I’ll come off of them until I have the other side done surgically and then spend a few months healing, then we can taper. I cannot take NSAIDs so it makes sense, but man, I hate taking them. Lol. Other than that - I am working, taking care of my pets and enjoying the very little time my husband comes home from travel for his own work. I am tired, still sick in other ways of course (vEDS, GP, in palliative care - the usual), but am feeling very positive and much better than I was before January 8 in very specific ways. Ask me anything! I cannot seem to think of all that I might have wanted to write in this moment but questions might prompt me. Hope you are all doing well!
I think that anybody would do what I do if they had to. I wouldn’t choose to be alone almost always, working full time and focused on everything but my health and myself so often, but it’s life, you know? Most people do not have the resources to survive without working and/or relying on others and for me, I have to work. I also have a fantastic support system (though most of it is virtual/phone from family and friends far away - emotional support is SO important so I am grateful). My best friend and her family live two blocks away which helps a lot on bad days, but I don’t like to call on her unless I need to for fear of always being “that friend.” Lol. I appreciate the kind words, though. Sometimes it feels good to be told I’m doing a great job - I am so tired!
Glad you’re taking care of yourself, that’s the most important part.
. So happy to hear you see such great improvements. It is so promising to know that you will be even better once you get the second styloid removed. Keeping you in prayer. 
