Had my appointment with an ENT/Lower Cranial Surgeon today. I addressed that I had a recent CT scan with the 3D reconstruction done which showed IJV compression and slightly larger styloid processes.
In summary, Eagle syndrome was ruled out:
while the IJV’s are compressed it is apparently very common for there to be compression once it reaches the base of your skull area. We went over additional axis views where he showed that there is no significant compression that’s stopping blood flow
As for the enlarged styloids apparently mine are nothing to be concerned about and he’s seen patients with much larger
He mentioned one Doctor in my country who is the only one who actively treats it and someone recommended in here. Apparently he’s being looked into for “over-operating” and from what I interpreted is capitalising on this niche disorder and providing surgery where it simply is not needed
2 new referrals to other doctors and 2 more expensive scans to go have done. Was fun while it lasted thinking I had finally found what’s wrong
So sorry to hear about your disappointment @joeyvivid So many doctors are not yet up to speed on venous congestion and unfortunately the answer you received is pretty common. It is true that veins (as compared to arteries) are more flexible and can compress and expand so much so that depending on the timing of a CT image you might catch the same segment expanded or compressed. I think that’s why some of the surgeons who are doing decompression in the US want their patients to have an IR venogram with manometry prior to surgery. The manometry measures the actual pressure changes across the stenosis to assess whether or not the narrowing is creating a high pressure situation in the brain. You might look into whether or not that test is something you can or want to pursue. Sending you good thoughts.
@joeyvivid An MRV can identify IJV stenosis but if done without contrast it is less reliable diagnostically and you can get a false negative (says you don’t have it when you actually do) due to the limitations of the testing.
The carotid ultrasound is looking for stenosis in your carotid arteries from plaque.
It’s not uncommon for members of our forum to get sent to a migraine specialist (including myself). It does feel like a bunch of rabbit holes but it is good to rule out some other potential causes of symptoms.
I’m sorry that you didn’t get any answers, but it’s not uncommon for doctors to be skeptical about IJV compression if they’re not very experienced with this. Prof Elliott has turned down some members for surgery, so doesn’t operate on everyone he sees if he’s the doctor you’re talking about, but when you work for any country’s public health system I guess there will be checks to ensure the money is being spent in the right areas, and obviously good to keep checking a doctor’s technique…but it does also mean that good doctors who are pioneering new techniques get held back, I think similar has happened in the UK (in my opinion).
If you want to ensure that you definitely don’t have IJV compression so as to properly rule it out, then you could consider sending your scans to another doctor for an online consultation? Dr Aghayev for example in Turkey does do online consults and is very experienced with this… But if you trust the opinion of the doctor you’ve just seen and don’t want to spend any more money then fair enough.
I hope that you get some answers with the next scans… Did the doctor you saw look at any collateral veins?