@Jules @Warrick can you confirm whether Mr Axon is doing C1 shaves and styloidectomies privately for patients without pulsatile tinnitus or only with? I’ll happily pay to see him privately it is the former, but the latter makes it kind of pointless as my pulsatile tinnitus occurs so rarely and everything I’ve read so far suggests that it needs to be constant to be deemed a pathology.
That I don’t know, I’m sorry… maybe you could make an online enquiry?
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Ah, no worries! Thanks though Jules, I’ll make an enquiry and if I find out I’ll report back so other members know for future reference.
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I’m in the same boat as you. When I saw him in Dec 23, he was unfortunately rather unhelpful because I didn’t meet his criteria at the time of a whooshing puslitile tinnitus. I had a what I thought was pulsatile tinnitus, but not by his definition… he ordered my CTv which Higgins reporting for me, which confirmed stenosis of the jugulars bilaterally at C1 styloid level. But Axon did not agree to operate or do anything further for me. So I don’t know whether that was because I didn’t fit his symptom criteria for surgery at that time, and whether that may have changed since I don’t know. But I was certainly never offered private surgery for styloidectomy or C1 shave despite asking for it.
I have been exploring alternative options, since a failed styloidectomy with Hughes in London (successful surgery, but failed to relieve symptoms or open the vein), and I am considering Dr Kamran in Istanbul, having drawn a negative on all options so far in the UK. I would consider Axon if he was offering private surgery. I believe he has experience of doing C1 shaves, but I don’t know a huge amount about his approach / techniques Vs Dr Kamran in Istanbul, who by now has done quite a good number. That said I would prefer to stay in the UK if possible!
It seems there is quite a bit of difference in opinion even within Addenbrookes around cranial venous outflow disorders, as even Axon and Higgins don’t always appear to be singing from the same song sheet. Higgins was very clear that I need a C1 shave, but Axon wouldn’t give me the time of day back in early 24. In fairness though it is very new and evolving in terms of their understanding and experiences, and they are working hard to gather experience and find ways to treat patients effectively. It’s just so damn frustrating when you need help now!
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Thanks for explaining that @Warrick. I’ll definitely share with you when they get back to me. Have sent an enquiry to Spire this evening. Fingers crossed they’re quick in their reply. Thanks for mentioning Dr Kamran too. There’s some solice in knowing that there are other options abroad; even though having such a serious operation in a country that doesn’t speak your mother tongue isn’t ideal to say the least! Hopefully for us both, Mr Axon’s policies in private practice have evolved this past year.
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I have some good news, I think! 
Here’s the enquiry I sent, and the response I received:
Seems to me, from what he’s said here, he’s not under the same restrictions that have been reported by NHS patients. I wish his response was a little more specific than it is, but I’m going to assume the caveats he speaks of are simply to do with retaining his rights vis a vis clinical reasoning as a surgeon. Which is fair enough. Still, I wish he could have at least said “no, sometimes I find it necessary to perform surgeries on IJV patients without pulsatile tinnitus”. But alas. I would message to enquire further, but I’m hesitant to push as I don’t want to develop a reputation before I get to see him.
Going to have a chat with my partner tonight and look to booking an appointment with Mr Axon in March. This is encouraging and good news I think @Warrick! Will keep you all appraised as things develop.
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That is positive for sure. It will be very interesting to see what he will say if you have a consultation with him in march.
What investigations have you had done thus far? If you haven’t had a CTv I would be expecting Axon to want you to have one as this seems to be the choice scan modality for observing suspected Boney compression of the jugular veins, if styloid / C1 are suspected.
Chat to him obviously, but I would very much advise caution around where you get the CTv carried out and by whom if you do decide to have one.
Dr Higgins is obviously the best person in the country to have report your scan, and he has worked closely with Nuffield Cambridge to ensure they do the CTv protocol correctly to best visualise the veins. He warned me that other hospitals who don’t know what they are looking for may not achieve a good scan, so it is worth considering this. Also if the reporting radiologist has no clue about jugular vein stenosis they will likely miss it, so again, Nuffield hospital have been trained by Higgins it seems.
It would also be wise to discuss exactly what Axons surgery would involve if he did agree to operate. For example if he would be limited to removing a small portion of styloid, or taking it back to skull base. And whether he will shave the C1 transverse process, or resect the whole TP. Whether the vertebral artery foreman would be left in tact or opened. Whether he would perform decompression of the vein from soft tissue such as muscle/ scar tissue/ fibrous bands/ lymph nodes/ occipital artery etc.
I too emailed the secretary yesterday to ask whether Axon had changed his policy with regards to jugular vein surgery as I had not been given an answer back in Jan 24. They told me they would ask Axon to review my latest CTv from sept and comment whether he would consider surgery. We will see. I suspect I will need to pay for a further consult with him to find out, but don’t want to waste my time and money to be told no again!
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I’ve had no direct investigations for IJV compression done so far. I had a very brief meeting with a consultant neurologist here in Peterborough at the end of last year which I now thoroughly regret. It was such a waste of money; I have a feeling he’d already written me off before I’d set foot in the room. He dismissed my symptoms as “functional” and sent me on my way.
I’ve come to the vascular angle quite late, having ruled out TMJ, cancer, lymphatic and musculoskeletal direct involvement in my symptoms over the past 7-8 years incrementally having seen an NHS oralmaxillofacial surgeon and ENT. I’m still kind of kicking myself that I didn’t link the cold and quickly changeable swelling in my face to a vascular issue sooner tbh - it’s so obvious now that I think about it.
As such, the imaging I have currently is limited to what I’ve posted here (albeit I have only posted what I deemed pertinent slices). I have not had a CTv done.
I have a full MRI of my head and neck from three years ago. This scan includes mostly axial and coronal imaging (which isn’t particularly useful at least for my eyes in identifying styloids; sagittal would have been ideal!), with contrast and T2 and T1 weights. This scan doesn’t show IJV compression at the time - which fits as it was a rare good day and my symptoms do wax and wane to some degree and have also been getting worse over time.
I also had a partial axial MRI of my upper neck done July of last year to investigate my TMJ (as well as sagittal close ups of the TMJ itself) which does seem to show bilateral IJV compression, and a carotid artery rather close to the transverse process on my left albeit not apparently compressed at that time. I’ve measured my IJV’s as tiny in this scan, and they specifically decrease in size around the transverse process with the right one becoming gargantuan just below the entry into the brain and above C1 - but I’ve no experience to say whether this is normal or not.
I also had an orthopantogram last year which shows a possibly calcified stylohyoid ligament on the left side, which is the side causing me issues. Albeit inconclusive, as the right is entirely cut off in the image preventing comparison and it’s kind of impossible to determine angle, orientation and true length from a single x-ray.
Thank you so much for the advice and directing me to a CTv and caution regarding where to get the CTv performed. From what I’ve read elsewhere on the forum, Mr Higgins seems to perhaps be taking an extended break due to his health? As you kindly suggest, I think the next port of call would be to investigate getting a CTv done under his supervision; or at least the supervision of someone who has trained under him.
My apprehension here however is that it appears that my IJV’s aren’t always compressed. Perhaps due to CCI? And that, come the day of the expensive scan, like three years ago, I have a good day. I just don’t have the funds to keep throwing at this. So much is riding on timing that I have no control over. Anyway… nothing I can do change that beyond trying to trigger it with really atrocious posture prior to the scan.
Am I likely to get the standard imaging of a CT scan with the CTv? As far as I’m aware, and please correct me if I’m wrong, a CTv only shows the vasculature itself? Wouldn’t confirmation of the position of the boney structures also be required?
I’ve noted those questions down regarding how Mr Axon would approach surgery for future reference to ask him in any consultation I might have with him.
Thank you @Warrick for taking me through all of this and sharing your experience and wisdom. It is really proving invaluable! Perhaps together we’ll both get the resolution we both desperately desire. Hope your week’s started well. I’ve had a good symptom day today, which is to be celebrated!
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So, with regards to a CTv it will be exactly as per a CT, but with contrast injected into the veins, and the imaging taken in the venous phase, which as far as I understand, is all about the timing between injecting the contrast and taking the images, to ensure the contrast is in the veins. This means the imaging will show all the boney structures as per a CT but with the veins highlighted better to be able to see them. This is why the importance of timing and how much contrast solution used comes in,and wanting to have the scan with the right hospital who knows what they are doing / looking for.
You will also want to ensure you are scanned down to the thoracic outlet / level of the heart to properly assess the full venous outflow pathway.
I’m not to sure about good days and bad days with regards to what would show on a scan. I would doubt that the compression disappears completely on a good day, and is only present in a bad day, but I’m not sure. I think perhaps it has more to do with how the body / brain is coping with the drainage on that particular day, which could be due to millions of factors including inflammation, levels of exertion / stressors / CSF production/ CSF volume / CSF drainage / blood pressure etc etc.
Speaking of good days, I too had a better day today, following a quote bad day on Sunday. Many people comment how air pressure can really effect symptoms when it comes to IIH, so when the air pressure drops (stormy weather) it can worsen IIH symptoms, and in high pressure, symptoms are improved. So if you notice your self feeling better on clear sunny days and worse on stormy days, it can be a strong indicator of IIH, which is in itself a potential side effect of IJV stenosis.
I’m not aware of Higgins being unwell, but he is not currently officially taking private patients, or allowed to treat patients on the NHS for IJV stenosis. Therefore it can be very difficult to get a scan with him. Thats why it will be worth speaking to Axon about where to get a scan, and mention you would like Higgins to report on it if possible, but if not possible, I would suggest Nuffield may be the most proficient hospital, as they have been strictly taught how to assess IJV stenosis by Higgins.
I’m not too good with MRi imaging, but have you tried radiant viewer to see if you can convert your MRi in to Sagittal view with the MPR tool? Usually if there are sufficient axial slices, a scan can be converted to Sagittal / coronal / 3d.
All the best
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I’m sure Mr Axon will recommend where to get a scan if he thinks it’s worth doing, I had mine on the NHS when I was seeing him & he insisted I had it at Addenbrooks rather than a local hospital as he likes them done in a specific way…
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@byebyetwenties have you got any further with Axon at all?
I had an interesting email today after I enquired around his policy towards surgery. He has now reviewed my latest CTv which I had in sept 24 post styloidectomy, and he has apparently “indicated he would be willing to proceed with me”. It’s cryptic I know. I’ve asked for clarification as to if that means he will agree to operate on me based on my CTv or whether he needs to further investigate first!
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Oh that’s excellent new Warrick! Well, it sounds like excellent news maybe heh? This limbo that medical professionals place us in can be so incredibly frustrating I’m sorry! We both got equally cryptic responses didn’t we.
I have an appointment with him next Friday and I’m really hoping this goes somewhere as I’m at my wits end. I’ve been having a really tough past week or so and ADHD has been breaking my brain on top of this. Sorry I’ve not been more attentative mate!
Did you hear back from him @Warrick?
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Hope your appointment goes well next week, let us know how you get on!
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