We do find that quite often members have their surgeries & then disappear, if members are still experiencing symptoms after surgery then often they stay here for support, so sometimes it can look like there’s more people who don’t do well after surgery. And also those with complicated medical situations find that although ES surgery helps, it can be just one surgery in a list of surgeries which are needed, like layers of an onion being peeled.
From personal experience, I had nerve pain and jaw/ ear aches for quite a while before I was diagnosed, without realising it was ES. I later developed the vascular symptoms & had bilateral IJV compression, it was probably a year of having those symptoms before I had the surgery. The vascular symptoms went quickly after the first surgery, but then I didn’t have C1 compression as well & hadn’t had it too long, so I do agree that perhaps those who don’t do as well have had compression for a long time. I did have a discussion with my doctor that if the veins didn’t re-open, then stenting could be done, and some members have needed angioplasty afterwards.
My nerve pain hasn’t gone completely, but is better than it was before. I’ve always felt like you say that if the nerves have been irritated for a long time, potentially rubbing away the myelin sheath, then this might not heal properly? There doesn’t seem to be a definite answer for this with members who’ve had surgery, as some do seem to heal with time.
You might find this discussion helpful:
Successful Surgery for severe Vagus Nerve Compression - General / Eagle Syndrome Stories - Living with Eagle
3 Likes