@BraveKat - Different doctors do different dosing w/ steroids, & the starting point can depend on how long the course is. Most do a tapering course starting w/ 50 mg or 40 mg for 2-3 days, then 40/30 for 2-3 days, then 30/20 & so on. The final round of 10 mg can last for up to 4 days. In the US, it seems that tapering steroid Rxes are often for 10-14 days but can be as short as 7 days. I would hope your PCP is willing to give you at least a 10 day course (again, advocate for dexamethasone), but 7 days would be better than nothing. I’m really sorry your surgeon won’t step in to help you at this point. After all how difficult is it to have ofc staff email an Rx script into a pharmacy. SHEESH! 
(but then I guess he’d be responsible if you had an adverse reaction…).
Thank you again. Yes I think it’s more about the monitoring/responsibility part but still feels strange that he’s so hands off post surgery. I was hoping for a bit more monitoring but he only offers a 1 week post-op checkin and seems reluctant to continue beyond that point. I guess everyone works differently and if other doctors were more familiar with ES then there would be no reason my GP/PCP couldn’t do the rest.
Also sorry I forgot to come back about the shoulder joint. Yes PT is helping but it’s a fine balance. I think if I use my neck muscles during rehab for my shoulder/back then I set off the nerves. I actually read an old thread yesterday about relaxing the vagus nerve where another member had a similar finding, in that a weak rotator cuff sets off the vagus nerve as the neck muscles have to step in to do the work when the shoulder isn’t as strong as it should be. I’m determined to getting my arm/shoulder muscles and joints working as they should, but anticipate this type of set back could easily happen again if I don’t take it super super slowly. Did you notice any connection between the type of exercise you were doing pre-op and your heart rated symptoms? Such as doing overhead arm movements or putting weight on your arms/shoulders?
“Did you notice any connection between the type of exercise you were doing pre-op and your heart rated symptoms?”
@BraveKat - I don’t know if you were addressing me specifically, but yes, I absolutely did notice a connection between specific exercises & vagus stimulation. I belonged to a gym & was seeing a personal trainer at the time I was diagnosed. When she had me doing rope slamming - lots of core, shoulder & neck work - that’s when I would get light headed, my bp would drop, I couldn’t catch my breath & heart would race like crazy. I also noticed that core work that used my neck would cause symptoms but not like the rope work did. Once I knew more about the vagus nerve, & its connection to heart & bp, I figured it was likely causing those symptoms. It took a while after surgery for them to settle down, but they did eventually.
Thank you, yes I was curious about your specific symptoms when exercising. I’m so glad you were able to get relief from them post op. Can you remember whether you got relief from this after the first surgery or was it once you’d had both sides done?
After a bit more diligence with restricting weight on my left arm, I’m finding my symptoms are more manageable now, but unfortunately this is what I found pre-op. I’ve also relapsed since my flare up and unable to sleep on my left or right sides at night, despite having no problem at about 8 weeks post op. My incision is also painful again. I’ve had an ultrasound completed on my left shoulder and neck with nothing found, including any abnormal scar tissue at the surface of the incision.
Out of interest, does anyone have any clicking bones near c5 - t1 that you notice has an affect on nerve pain or vagus nerve symptoms? I’ve noticed when I have a pain/nerve flare up , if I move my arm and neck I get a lot of clicking in this area (and collarbone). I have a disk bulge at c5/c6 and I’m wondering how much that might be contributing to eagles recovery.
I had very gradual relief that occurred over many months after my first surgery & likely even more after my second surgery. I still have some of those symptoms when I hike if I push myself hard climbing a steep hill but otherwise, exercise at a moderate level doesn’t bother me. I suspect I’ve had vagal issues for years, & to be honest, I haven’t done any of the therapies like humming, singing, gargling, cold showers, etc., that are supposed to help w/ vagus nerve stimulation, so I only have my self to blame for not making further progress. I did just read that endurance & interval training can also help w/ VN stimulation. Maybe that’s why my symptoms improved once my styloids were gone as I was a long distance runner back then.
I have had a prolapsed disc C5-C6, any muscle tension in my neck & shoulders seems to flare up the Trigeminal nerve pain , it all contributes & complicates things I think!
Thank you 
it’s so interesting to hear your recovery experience. Im sure over the years youve shared it countless times so I really appreciate how tirelessly you and @jules contribute.
I’m finding the most difficult part of the recovery is the not knowing if my residual symptoms (ones that keep coming back off and on) are permanent or in the ‘still healing’ phase. I was just reading a post of yours from 2023 where you mentioned to another member that you had the classic spinal accessory nerve symptoms pre-surgery but they were relieved after. Can you remember if that also took many months? Since my flare up the deep head pain (around the skull base) has settled but the vagus nerve and SAN are still very angry. I’m getting persistent tension in my trap which means I can’t even hold a piece of paper in my left hand without setting off the vagus nerve. Turning my head or even just holding my head in one place is too much. These are the same symptoms I had pre-surgery (along with a bunch of others which come and go at times but largely have improved). It feels like I need to go back to weeks of bed rest like immediately after surgery which definitely settled the SAN down but it’s no longer an option.
My surgeon who is located in a different city has been reluctant to do a follow up but I think I’ll try to book one as I’m 4 months post op next week.
Yes I think so too! I feel like I was improving (SAN and vagus symptoms were so much better than they had been) before I floated in the swimming pool which Im guessing put too much pressure on the c5-c6 area and then triggered my flare up. Ahh! So frustrating.
I’m so sorry for your current symptoms flare, @BraveKat! I vaguely recall my SAN symptoms subsided on the earlier end of recovery. Later were trigeminal & glossopharyngeal, & some vagus nerve symptoms. I’ve forgotten if you’ve looked into TOS as a possible cause.
I agree that you should make a follow-up appointment with your surgeon since your pain shouldn’t have come back w/ such force at this point unless there’s something else going on.
It is so frustrating for you, we have had members (as I’ve probably said before) who have come back on over a year after surgery to say that they’re still seeing improvements, it is possible 
Thank you @jules! I try to keep reminding myself of this (but it is hard to jump on board with) 