Hi Cat1!
So sorry that you’re still suffering after such a long time! Did the surgery help at all with your symptoms? It could be that not enough was removed during the surgery, and/ or the styloids re-grown with time. There could also be scar tissue affecting the nerves & causing pain too.
If you’re seeing another doctor, it would be a good idea to get a new CT to see what’s going on for starters. I would suggest that as you’ve had one surgery already, it would be best for you to see one of the really experienced doctors, like Dr Samji as you mentioned, or Dr Cognetti in PA for a revision surgery. But if that’s not possible, have a look at the doctors list if you haven’t already. Here’s the link:
https://forum.livingwitheagle.org/t/us-doctors-familiar-with-es-2019/4752
As for pain relief, here’s a link for the info in the Newbies Guide Section:
Nerve pain medications can help, like Gabapentin, Amitriptyline, Carbamazine etc. Also muscle relaxants like Baclofen can help too sometimes. Some members have been helped by lidocaine/ steroid injections into the area, although it’s usually just temporary- the time it helps for varies a lot!
There’s no explanation for tingling & hands going white, but other members have experienced it! The nerves for the hands exit lower in the neck than the styloids are. Compression of the carotid arteries with vascular ES causes dizziness & headaches, but the carotid arteries go to the brain, so wouldn’t affect the arms. Some members have had Thoracic Outlet Syndrome (TOS) in addition to ES which can cause tingling in the arms & hands. Might be worth looking into? Raynauds too can cause the hands to go discoloured.
I hope that you get on okay with the ENT appt., let us know how you get on!