Hi @mutterfly,
I’m sorry for the struggles you’ve had trying to find things to help reduce your symptoms. If you click on the magnifying glass icon (above & to the right) & type symptoms in the search bar, a long list of links to discussions about people’s symptoms will come up. It may take you awhile to read through all the discussions but you’ll know you’re not alone once you’ve done that.
Your symptoms do sound like you may have vascular compression. We’ve had some members who’ve gotten relief from those types of symptoms by taking a blood thinner short term (these are often used as meds for high blood pressure). For your body pain, numbness, tingling (these would be nerve pains), you can try a nerve pain medication. These are usually either anti-convulsants or anti-depressants. Here is an article that discusses the two types & explains how each works to help reduce pain: Drugs that relieve nerve pain - Harvard Health.
Jules often mentions that using lidocaine patches &/or lidocaine cream on the neck has been helpful for some members. A more invasive approach is to find an ENT doctor who can give you an ultrasound guided injection of lidocaine & cortisone into your neck or tonsillar area. These shots can really help but some people have more pain after they get one so there is that downside.
You can try icing your neck - 15 min on & 45 min off. If that makes pain worsen, try heat instead. Sleep & rest w/ your head elevated a fair amount. You’ll need to get a wedge pillow to help reduce swelling post op so you could purchase that now, & test it out to see if it helps your vascular symptoms (headache, dizziness, confusion, memory loss, vision probs, headache, fatigue, etc).
As far as your less localized body aches & sleepy limbs go, they may or may not be related to ES. Our body systems are very integrated w/ each other so when one area is negatively affected, other areas farther away can suffer, too.
Depression/anxiety are controlled to some degree by the vagus nerve, & it’s one of the nerves more commonly irritated by ES. Also, chronic pain can cause depression & anxiety. It’s the result of never feeling good & fighting to make it through each day & of not being believed or understood when you try to share how you’re feeling w/ family & friends.
If you haven’t done so, call the doctor’s ofc & ask to be put on a cancellation list. People do cancel appts. last minute. You may be able to get in sooner that way.
Here are a few links from the “symptoms” search:
https://forum.livingwitheagle.org/t/es-information-background-anatomy-styloid-length-angulation-
classic-and-vascular/1391