Hi & welcome to the site! I’m glad you found us but as you said, a shame you have to be!
It’s hard to know with IJV compression without getting opinions on your imaging as to whether you have mainly styloid compression, or whether the C1 process is causing a fair bit too…just to complicate things, we’ve had members who’ve had compression from soft tissues too, like other blood vessels, nerves or muscles.
I had successful surgery for bilateral IJV compression with just a styloidectomy, I didn’t have C1 involvement. Sometimes this can be enough, but the surgeon would have to be very experienced with the surgery, and would have to remove the styloid right close to the base of the skull to stop the compression- if they just shorten the styloid to a ‘normal’ length as some less experienced doctors do, then this is unlikely to help with your symptoms, so this is something to check with your doctor.
Some doctors feel that a C1 shave can contribute to instability, and as many members have this already, this is a concern, but not everyone agrees with this! Some doctors are quite conservative with how much they remove, so occasionally this isn’t enough & we’ve had members need revision surgery, other doctors (like Dr Aghayev) remove more to ensure the surgery is done once only. The risk with having revision surgeries is that more scar tissue can form, which can itself then cause compression, so it’s a tricky decision really!
We’ve had some discussions and info about Dr Aghayev, in case you’ve not seen these:
Info About ES by Dr Kamran Aghayev - General / Research Papers - Living with Eagle
A Review Of IJV Compression by Dr Aghayev - General / Research Papers - Living with Eagle
Everything you need to know about Dr. Khamran Aghayev - General - Living with Eagle
So if you do want to go ahead with surgery in Denmark, I would definitely as your doctor how much they intend to remove of your styloid, we have a list of questions we suggest members ask their doctors:
- How many ES surgeries have they done and what was the success rate?
- Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
- You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
- If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
- There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
- Will it be a day case surgery or will you need to stay in?
- Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
- Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
- What painkillers will be prescribed afterwards.
- Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
- We have heard that occasionally doctors use surgical clips which are left in, it’s been suggested that these could interfere with chiropractic adjustments if needed post-surgery, so something to consider, and also we have now seen members who’ve been left in pain from the clips and needed further surgery to remove them, so do ask if they might be used.
Hope this helps!