I have approached Doctor Axon who has said he’s not sure he can help. But he said to try and get a CT venogram on the NHS. How do I get this? I visited my GP yesterday and they were happy to refer me privately, but I would have to pay to see ENT before they did anything.
I think a consultant has to order a CT on the NHS, and I would guess that the waiting time will be pretty long…I’m surprised that Mr Axon wouldn’t request a private CT venogram, or did you not want to have to pay for one?
Are you seeing your neurologist again? If so, then that would be your best bet to try and persuade them to refer you for one, show them some of the research papers about ES, as you’re already ‘in the system’…
1 Like
I’m trying to get the neurosurgeon to refer me, but as he’s never heard of eagles I am not having much luck. He’s putting it down as a complex headache. Dr Axon wasn’t sure if my symptoms suggested eagles, but I just want to be sure. I will now have to pay again to see a neurologist to get them to refer me.
Oh no, it’s just going round in circles, so frustrating! 
1 Like
I visited Mr Saunders in Bristol last week about exploring the possibility of eagles. He was a really lovely doctor, but felt I could have multiple things going on. He did say eagles can be a woolly diagnosis. I have been recommended an ENT where I live. In the meantime, it sounds like my test this Saturday will now be a CT angiogram and venogram. I am also going back to my original neurologist who suspected a CFS leak.
2 Likes
I’m sorry that Mr Saunders was a bit vague about the potential Eagles diagnosis, but good that you can have a CT angio/venogram, hopefully that will show if there is vascular compression causing intracranial hypertension
1 Like
I’ve just had a phone call from my GP to say that my CT scan was fine, but my styloids are 4cm on each side. I haven’t got the imaging yet to upload. Do you think this could explain my symptoms? I haven’t started getting pulsatile tinnitus on both sides, whereas before it was only the right side along with other symptoms. I am really struggling cognitively still, and with being upright for very long. Should I see my neurologist or go straight to an ENT?
2 Likes
I’m not sure how it can be said that your CT is fine when you have 4cms styloids both sides; they’re much longer than ‘average’ , so could certainly be causing symptoms! It could be that you only have IJV compression one side- often with IJV compression it’s the angle & thickness of the styloids which cause the compression rather than the length, this could be why you have pulsatile tinnitus one side…I would wait to see your imaging, because depending on whether there is compression, and how high this is, or if your C1 processes are involved does make a difference with who you should see?
1 Like
Thank you. Shall I upload the images here when I have them? I will put in a request now.
2 Likes
You’re welcome to upload your images here, @Hamonrye. Please remove any personal information on them before posting them. If you can convert them to 3D using either radiantviewer.com (for PCs) or Bee Dicom Viewer App (for Macs) that is helpful for us. We are also ok looking at an axial image at the level of C1.
1 Like
Would be good to have a look at them if you can…
When I look at them it’s just black? Do I need to upload them to something?
Can I put my medical report on here, if I take personal info out?
1 Like
@Hamonrye - Yes to putting your surgical or radiology report on here w/ personal info removed.
You’ll likely need to upload your CT images either to radiantviewer.com if you have a PC or Bee Dicom Viewer App if you have a Mac as those will convert the images to 3D which will make them easier for you & us if you upload them) to understand.
1 Like
EXAMINATION: CT
CLINICAL INDICATION: Headaches with feeling of pressure and pulsatile tinnitus. Referred to into privately with? Eagle syndrome ? Aneurysm? Vascular issue.
FINDINGS:
Noncontrast CT head:
No acute intracranial haemorrhage. No major arterial territory infarcts. No space-occupying lesions.
Empty sella noted. Vertical tortuosity of the optic nerve sheath.
CT angiogram head and neck and CT venogram
Aortic arch and origin of great vessels is normal. Common carotid artery and bifurcation appear unremarkable. No significant carotid stenosis. Normal course and calibre to the petrous, cavernous
ano suoraclinoid seaments or LA oilateraliv. Godominant verienral arieres, basilar artery and ils oranches appear unremarkable. The ACA, MCA and PCA are normal. No aneurysms are identified al he circle of Willis or elsewhere in the intracranial circulation. The posterior communicating arteries are hypoplastic.
Elongated styloid process is noted bilaterally measuring up to 4.5 cm. The jugular vein appears narrowed as it courses between the stvloid process and arch of the C1. The maior cerebral venous sinuses are patent. Bilateral transverse sinuses appear equal in calibre. No evidence of venous sinus stenosis. No dural AV fistula. Deep cerebral veins are patent. No high riding jugular bulb or jugular diverticulum. No mass lesions in the jugular fossa. The middle ear cavity is clear. Ossicular chain is intact. Inner ear structures appear unremarkable.
Elongated styloid process is seen bilaterally. Narrowing of the internal jugular vein between styloid process and anterior arch of atlas bilaterally. No evidence of venous sinus thrombosis, venous stenosis or dural AV fistula. No mass lesions in the jugular fossa or middle ear cavity. Empty selle
noted.
I have been feeling that I have been going into high pressure. I’m concerned as on my last MRI, I had a partially empty sella. I’m seeing my opticians on Monday.
1 Like
The report is good in that it confirms that you have bilateral IJV compression between the styloids and the C1 processes, and signs of intracranial hypertension, so I’m glad you’re seeing the opticians to get the optic nerves checked… Obviously without seeing the images it’s not possible to say whether removing the styloids would be enough to help or whether you’d need a C1 shave as well… So you could go back to Mr Saunders with the imaging, see the ENT nearer you- but are they experienced enough to judge the compression & whether C1 is an issue, & are they experienced enough to remove the styloids at the skull base? Otherwise if you could ask to be referred to Mr Axon at Addenbrooks? He is experienced at removing the styloids at the base of the skull, & can do a C1 shave if needed. Some members have paid to see him/ have a virtual appointment privately & then gone on the NHS waiting list? Good that the IJV compression is confirmed
3 Likes
Thanks Jules I intend to book in with him soon. I have private insurance but he’s not in the open referral network, so I hope I won’t have a battle for authorisation. I will email his secretary to see how others managed it. It’s good to finally have proof that there is something going on.
3 Likes
Sorry meant to say Dr Axon
1 Like
@Hamonrye - I hope you’re able to get an appt before long so you can make significant forward progress sooner than later.
Sorry, I think we’ve talked about that before, sorry I forgot!