I’ve seen an ENT doctor in Bristol through the NHS, but they didn’t find anything. So I went private and I’m currently navigating the diagnostic process for Internal Jugular Vein (IJV) compression and have been consulting with Mr. Patrick Axon in Cambridge. My scans show significant compression, and my main symptoms are pulsatile tinnitus, debilitating brain fog, and fatigue.
Mr. Axon has mentioned C1 shaving/resection as a potential path forward, and I’m hoping to connect with anyone who has had this specific surgery with him.
If you’re comfortable sharing, I’d love to know:
The Recovery: How was the immediate progress after surgery? Did you struggle much with post-op pain or nausea?
The Results: Did you find significant relief from the “whooshing” (PT) and the brain fog?
Timeline: How long was it before you felt “back to normal” or started noticing the symptoms fading?
Any insight, tips for recovery, or even just your general experience with the Cambridge team would be so incredibly helpful. Feel free to comment below or DM me if you prefer.
I had surgery with Mr Axon, but not the C1 shave, just the styloid removed, so it might not be quite the same for you. Mr Axon uses a drain for the first 24 hours, which for me was the most uncomfortable part of the procedure, it was hard to sleep with it in! But it helps with swelling, so is a good thing really. I wasn’t in too much pain, I only took the stronger painkillers for the first couple of days, and then was okay on paracetemol. I didn’t have any nausea, but I think that’s a more personal thing, if you’re prone to that after anaesthesia then best to ask about that before surgery.
I had very quick improvement with the vascular symptoms, but this does seem to be unusual, and it can take 6 weeks to improve or more.
I think Mr Axon does a slightly different technique & where he does the incision to other doctors, certainly for the styloidectomy, so I think recovery & pain from the actual incision is quicker than with some doctors. I had trouble opening my mouth after surgery & could only eat soft foods / smoothies, this is pretty common after surgery. My neck was very stiff too, so I couldn’t turn my head & wasn’t able to drive for a few weeks. But I was okay walking about etc after a few days. Having said that, my two surgeries were different, as with the second one I could eat fine, turn my head easier, but I had a complete numbness around my ear & couldn’t hear properly, it felt like concrete had been poured in my ear, which I didn’t have first time, so it can vary!
I’m not sure that anyone who has had the C1 shave as well with Mr Axon is active on the site now, so not sure if you’ll get any responses, but there are plenty of others who’ve had C1 shaves with US doctors.
I think with either surgery it’s important to rest and not to overdo things, especially if you have a good day, it’s easy to make the most of it & do more, but you often pay for it the next day.
For general advice about what to prepare & recovery, there’s info here: ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Feel free to ask if there’s anything I haven’t answered?