Hi all,
Just wanted to give a quick update. I had my 1st (and possibly last) surgery with Dr. Nakaji two days ago. The procedure went as expected. He was able to remove my styloid, cut back a bit of my C-1, remove the styohyoid ligament, and partially cut the (posterior?) digastric belly of my right side (and a lymph node that was in the way).
Both my CT and cath-venogram showed significant stenosis located at the styloid and C-1 on both sides. I do not appear to have a dominant jugular vein on scans. My “classic” eagles symptoms are worse on the left side but we decided to do the right side because it had a better chance statistical chance of being a sort of “hidden” dominant vein where it doesn’t appear bigger but does get better flow. This would better the chances of reducing my head pressure, brain fog, and head pain (by far my worst symptoms).
The surgery went well. I woke up feeling pretty good from symptoms but I was pretty heavily dosed. It took me about a full day and a half to fully get the sedation out of my system (this is par for the course for me). Symptoms wise, My head feels lighter. There’s no doubt about that. I can also bend over to grab things without feeling my heartbeat in my face or feeling like my head will explode. I expect this benefit to wane over the next few days and weeks as the swelling kicks in. Dr. Nakaji warns of this as well. But hopefully, since I experienced some relief before swelling kicks in, I’m hopeful that once healed, I will still retain some benefit.
I also feel like I can relax that side of my body a little bit. I even feel like some of my nose congestion and breathing is better. I don’t know how to explain it but I feel like i’m breathing with my diaphragm again for the first time in years, rather than with my chest or neck muscles.
Speaking of which, Dr. Nakaji did say that he expects my neck muscles (especially the SCM) to be pretty sore for a few days or weeks. He said they were really tight and he really had to move them to get where he was going. Today I can attest to the accuracy of this warning. But nothing terrible. I’m alternating ibuprofen and acetametaphine for pain management which isn’t terrible. I have some right sided throat and jaw discomfort. My jaw is tight and sort of clicks. I’m eating softer foods (but not just mush!). ice packs provide a lot of relief. Please don’t forget the ice packs, people!
The only weird nerve issue I seem to have is that when I turn my head or cough, it feels like someone is pulling on the top of my ear. Doesn’t hurt at all, but it is the strangest sensation. I expect this to improve with time but would happily take it instead of the head pressure.
I have a follow up with Dr. Nakaji next week but for now, I’m taking it slow and trying to enjoy some Arizona sun. Dr. Nakaji said we’ll wait 8 weeks before determining whether the one-sided surgery “worked” and whether a second one would be required.
