Many of your symptoms definitely sound like they could be due to ES- unfortunately we can’t say which would be resolved by surgery, it’s something you just have to wait & see…
It seems reasonable that the cervical instability could cause an inflammatory response in the body- we know that neck trauma for example is a cause of ES. And we have had quite a few members with Ehlers Danlos Syndrome, as well as cervical instability. Both Dr Cognetti & Dr Samji are very experienced surgeons; Dr Cognetti is obvs happy to take your case, & I believe that Dr Samji has taken on patients with EDS so that shouldn’t be a problem. But worth asking how your neck problem might affect recovery.
There are risks with surgery- the doctors will explain this to you- of nerve damage or a stroke, but this is very are, & especially so when you see an experienced surgeon. Nerves are monitored during surgery so the doctors can keep an eye on them & any stress the surgery’s causing. As for risks vs benefits, I would say if you’re getting vascular symptoms, then surgery is highly likely to help, vascular symptoms often improve very quickly after surgery. And it’s worth bearing in mind that there are risks to leaving the styloids in if they’re compressing blood vessels- risks of a stroke for example, or a heart attack or stroke, although I would stress that these effects are very rare. Again though, you would need to discuss how much the neck instability would affect recovery, that’s a bit more specialised…
If you want to know more about what to expect after surgery, there’s lots of detailed discussions, you can use the search function for that. But basically expect to not be able to chew well for a week or 2, so be prepared with soft foods, smoothies etc. There could be swelling, so have extra pillows handy as you’ll need to sleep semi upright, & have ice packs ready. The days 3-5 are the worst for swelling, so be prepared to feel rough then. Also nerves can take even up to a year to heal, so don’t expect too much too soon, & there will be many ups & downs in recovery. There’s also a ‘surgery shopping list’ you can search for with suggestions for what to get ready.
If you have bilateral ES, the least affected side can sometimes ramp up after surgery, yes, unfortunately! The surgery can shift things about, & perhaps slightly alter the hyoid bone if there’s been calcified ligaments, but it doesn’t always happen. And hopefully you’ll notice vascular improvements quickly in the side operated on which should help you feel better. There’s usually a 3-6 month gap between surgeries, although this will depend on recovery.
A venogram’s not always necessary- it sounds as if you have maybe more compression or irritation of an artery, so a venogram would show just the veins & any affect on them. A CT angiogram would perhaps be of more use, but often surgeons are happy to operate without this, Dr Samji doesn’t ask for this either. If they don’t need one, then best not too as the dye used can occasionally affect some people.
Hope this helps? Let us now how you get on with Dr Samji & what you decide!