I have confirmed unilateral IJVS by the C1 and the styloid. I live in Australia, but unfortunately our only Surgeon that also does the C1 shave, only does the dominant side and my dominant jugular vein is fine.
I have reached out to Dr Kamran, he is willing to do the surgery.
The other option seems to be Dr Axon. Which I have not engaged with as of yet.
My questions are:
Going through antedoctal results, does there seem to be one that has more sound results? (Not too concerned about bed side manners )
Does Dr Axon require further investigations other than a CT Venogram? I did read from one poster that he needed to do a lumbar puncture first.
No, there doesn’t seem to be any difference in their results- with all the VES surgeons there might be members who don’t do as well, but often there’s other conditions which might need addressing too. Dr Aghayev does do both sides in one surgery though, whereas Mr Axon doesn’t.
Mr Axon used to like to see a CT venogram ( the non-invasive CT with contrast, not the invasive pressure testing manometry venogram) done his way, so in the past has wanted patients to have this at Cambridge, but I don’t think this seems to be the case now. When I saw him for bilateral IJV compression, he mentioned that he might want me to have a LP, but when he saw the CT images decided it wasn’t needed.
Hope this helps!
Yes this certainly does help. Mostly wanting to avoid adverse effects and does seem like it can happen with any surgeon.
Seems like a lumbar puncture is his go to confirm the diagnosis, which he would probably want with me being unilateral. This is something I wouldn’t do.
I’ve not heard of anyone on the forum having a LP done before he accepted them for surgery …
Yes, he did both my surgeries, & did a very good job! He is very experienced & I’m so blessed to have found out about him through this site, & to have been able to have the surgery done at Cambridge.
That’s awesome to hear. It’s good to know he’s not making everyone do a LP. There was definitely a member here that was told he needed to, but was a while back.
Hi @Bronte I am waiting a unilateral styloidectomy & C1 transverse process resection for IJV compression with Mr Axon and he didn’t require a LP just went off the CT with contrast that I had already had at a different NHS trust.
I do have some stenosis on the other side from my C1 transverse process, but the styloid is normal/short on that side. Most of my symptoms, pain under ear, back of head, shoulder pain, ear pressure & pulsatile tinnitus etc is on the left. Although I have got some pressure in my right ear, but no pain.
Hi Jules
Do you know why he decided it wasn’t needed? Would Dr. Kamran ever say - after looking at the CT venogram - that a lumbar puncture is needed? Dr. Kamran didn’t mention anything in his short video of my scans about CSF stuff or lumbar punctures, and I’m wondering if this means, that there obviously isn’t a need
I presume because the compression was so obvious on the imaging, & going on my symptoms too, he was confident that the surgery would help. I’ve not heard of anyone having an LP with Dr Aghayev either.
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