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Hi all, I’ve been quiet on this site for a while. Been trying to do different things to hopefully avoid having to have surgery to remove my right styloid (first) but it seems like it still has to happen to hopefully alleviate these symptoms that have lingered. If all goes well maybe I won’t have to remove the left one, but I’ve had some doctors tell me that I probably will in order to get the results I want. It also looks like I would have to have them both removed in order to treat my C1/C2 and get those where they should be. I don’t think the surgery is all that complicated for me but I’m still pretty scared/nervous about it. This is really going to be the first step in a serious of steps to include getting my jaw misalignment fixed and then focusing on C1/C2. If anyone has any words of wisdom to help by all means let me know. I just want to feel like I did before all of this started.
I’m glad that you’re seeing a very experienced doctor for your surgery, but a shame that you need it!
There’s lots of info in the Newbies Guide Section about surgery, and there’s also a suggested shopping list of things you’ll find helpful, here’s a link:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
The past discussions can be useful too, if you search for something like ‘what to expect after surgery’, it should come up with lots of posts to help prepare you, some members have put some quite detailed stories on about their experiences…
But in brief, have ice packs ready as you’ll need to ice your neck regularly to help with swelling, & extra pillows as sleeping propped up will help too, if you’re not already. Chewing is sometimes uncomfortable, so have soft foods or smoothie ingredients ready …
It’s important to keep up with pain meds regularly, if you leave it & pain worsens again it can take a bit longer to get it under control again. (Stool softeners are recommended depending on what meds you’re on!) You may get first bite syndrome after surgery, it’s quite common, the nerves to the parotid gland get irritated so it’s common to get sharp pains in your cheek when you first eat. Drinking plenty can help a bit with this, it usually wears off. Days 3-5 are the worst for swelling so you may feel at your roughest then, the recovery from ES surgery is very up & down, so if you feel things are going backwards a bit, don’t panic! Nerves can take up to a year to heal, so improvements are often gradual and can be very slow…
I hope that all goes well, have you got a definite date?
Thanks Jules, do you happen to know why they never remove both left and right styloids at the same time? I am guessing it has to do with the post op issues of recovery and infection risk etc. Have you heard how long it usually takes in between surgeries for someone who needs them both removed to have the done?
@pauld1635 - There are a very few surgeons who do bilateral ES surgeries, but most don’t due to the amount of swelling in the neck & throat post op. This would be even more true w/ vES where the styloid is removed & the IJV decompressed since it’s a more involved surgery with a higher risk. The only surgeon I know of who does bilateral vES surgery is Dr. Aghayev in Turkiye. Surgeries are typically done about 3 months a part.
As @Isaiah_40_31 says, you wouldn’t be able to have bilateral surgery with Dr Hepworth, most surgeons leave it at least 3 months.
A little update. I am trying to get an updated CT Venogram with Dr. Hepworth, but his office staff have been an absolute disaster. I’m keeping my surgery date for June for now, but this has been a really bad experience with his staff. I’m going to have a consult with Dr. Nakaji (in Scottsdale/Phoenix) just in case. He is having me complete the CTV and then going to meet with me the next day and his office has been great so far. We’ll see and I’ll keep everyone posted on how he is although someone in this threat already highly recommended him. Will be a tough choice because I do really like Dr. Hepworth, but dealing with his staff has been a nightmare recently.
I’m sorry that you’re having problems with Dr Hepworth’s office, we have had quite a few members say the same! We were hoping when things changed last year that this would improve, but obviously not! Good though that you’re able to see Dr Nakaji, other members have had good experienced & outcomes with him. Look forward to hearing how it goes…