Thanks. This seems like good advice. Did the styloidectomy done in 2020 have a bad outcome you would say? Did it make any symptoms worse, or make the revision surgery harder?
The other reason to consider a styloidectomy alone (without the C1 shave) would be to not remove more bone/soft tissue than absolutely necessary, in case I was so lucky that a styloidectomy alone would fix the IJV compression. Maybe a non-realistic thought in my case though, not sure…
Well, to say I had a bad outcome from 1st surgery (styloidectomy alone) would be difficult to answer to a degree. To ignore IJV compression and potential for C1 involvement entirely I think is a disservice to patients. This is why I encourage you not to jump to the conclusion styloidectomy alone, especially with a surgeon who has little experience is not doing your due diligence. Learn from the patients whom came before you. It is reasonable to at a minimum explore IJV compression and C1 involvement with a surgeon (2nd opinion) who has expertise in identifying it. Ive learned enough recently to pull my scans into software and identify on my own to know it is an issue. My daughter just had scans last week and I can see it plain as day we have some serious issues. Having others here on this forum who have learned to identify these issues helped point me in the right direction. My bad outcome is that I had to go in for a revision because the job wasn’t down right the first time. That is never a good thing. I know scar tissue was encountered this revision surgery. Given I have hEDS and tend to lay down scar tissue and adhesions (something the 1st surgeon knew) is not a good thing either. You have the opportunity and choice to consult with a doc (may cost you $$$) who has experience identifying IJV compression and whether C1 is involved. It may not be an issue for you, by why go blindly into surgery w/o knowing this information? Until you have all the information you need, you are making decisions or considering “what if’s” “not sure” without all the information you need to make an educated decision.
Thanks again - really some good food for thought!
Is it correct understood then, that if you have had the 2nd surgery in the first place instead, then you wouldn’t have had as many issues you reckon?
I figured I would use the free online consultation with Dr. Kamran Aghayev at least, but I just figured it seems that he always advice people to remove the C1 tubercle when the IJV is involved.
Additionally, I would probably pay the maybe 400dollars to consult with Dr. Patrick Axon (experiences London surgeon) before taking the final decision.
If you have any thoughts on my scans I’m also interested (even though your not a doctor, I know) 
Pictures in the top of this thread (also check out Dropbox link CTV scan videos if you want:)
@Isaiah_40_31
@Jules
@Snapple2020
@Chrickychricky
Still very interested in your thoughts, so I have to share:
I contacted the hospital with the two most experienced surgeons in my country (transcervical approach) with questions. They looked at my case and are both not entirely convinced that my symptoms are caused by the vascular component, but they believe that I will likely benefit from surgery in any case. They also wrote that: “your symptoms may also ‘only’ be due to Eagle’s syndrome without the vascular component. In the case of such a long styloid process, we would remove it externally, and we usually go up to the skull base and remove it completely. We use a nerve stimulator/monitoring during the procedure.”
I guess that is a pretty good start, even though the 2 surgeons in question has probably only done 3 transcervical styloidectomies each, but are both very experienced in generel doing surgeries in the neck area. They want to schedule an appointment and talk about things, probably offering the styloidectomy.
Before taking any decisions I still plan on having a online consult with at least Dr. Kamran to see if he feels absolutely certain that C1 resection is necessary. Maybe also Dr. Axon.
Any thoughts? Really appreciated
Yeah, why not fix it right the first time around? It as a job half done.
You would do yourself right by paying the $400 for Dr. Axon consult. Thats a bargain compared to what they cost now in the states as cash pay. Sounds like you are on the right track to get some decent opinions before you jump.
I didn’t look at your scans real closely but will. On the surface, Im not so sure you can get away without doing a C1 shave. There appears to be some significant compressions in there. The narrowing of the veins is very apparent visually.
@IJVman - It’s great that the two surgeons do transcervical surgeries w/ nerve monitoring & cut the styloids as close to the skull base as possible. Would you mind sharing their names with us so I can put them on our Doctors List as possible help for others who may join from your country?
I agree w/ what @Snapple2020 said i.e. that getting Mr. Axon & Dr. Aghayev’s opinions would be worthwhile before committing to surgery with either of the surgeons you’ve already spoken to in your country. Though they sound like they’d do a great job w/ your styloids, I have to agree that your C1 transverse processes look quite involved in your IJV compression. I also think it would be good for you to meet w/ your local surgeons to show them your 3D images & ask them why they think a styloidectomy(ies) alone would relieve your symptoms when you have clear IJV compression which is known to create IH & symptoms from that. We have a number of medical research papers in our Research Paper section which address IJV compression & the awful symptoms it causes & the positive results that occur once the IJV(s) are decompressed. You could print a couple of those, especially ones where symptoms like yours are presented, to take with you to your appointment.
I’ll text you privately with the names!
Yes, I will definitely talk with others before surgery - thanks for stressing that point
And thanks for sharing research papers. I was actually about to ask for specific research papers that could work as proof for the IJV-compression subtype even exists which noone in Denmark seems to know. The problem might be that they have never seen it, probably never seen the research, and don’t actually believe that IJV compression can lead to symptoms, as the collaterals is securing the drainage from the brain (this is what the latest “specilist” neurologist said and wrote in my journal - he simply didn’t buy in on the premise even though he agreed that my IJV was compressed).
Is there a couple of the research papers that are your go-to “proof” that stylo-atlanto jugular vein compression exists and can cause issues like headache/brainfog/pressure?
@Jules linked this earlier, but is doesn’t really give hard proof that it exists. For one the authors group the artery and jugular vein subtype together under “vascular”, and when listing the symptoms stemming from jugular vein compression they refer to 1 case study (Farina et al., 2021) and symptoms I don’t really have.
Is there any go-to paper to use instead perhaps, that the surgeons can’t ignore?
Thanks
@IJVman Your images certainly suggest IJV compression. Have you had an IR venogram with manometry?
It’s promising that the surgeons would remove the styloids to skull base & do external surgery… unfortunately there’s no way to tell for sure if just having the styloids removed will be enough to open up the IJVs… It would be good to speak to Dr Aghayev, from what members have shared on here, he does usually seem to be pretty proactive with doing a C1 shave, I can’t think of anyone who has spoken to him who he hasn’t suggested this surgery to- but maybe everyone who consulted him definitely did need it! I get the feeling that Mr Axon is a bit more cautious…so would be good to speak to both of them.
This paper that @TheDude posted is helpful with explaining symptoms of venous compression, mentions that some people are more symptomatic than others, and mentions a styloidectomy helping to relieve the compression:
Cerebral venous outflow revisited: Contemporary insights to simplify a complex disease - Kyle M Fargen, Charles Stout, Jan Vargas, Omar Ashraf, Adnan Siddiqui, Ferdinand K Hui, 2025
And another one he posted by some of the US VES doctors:
Interventional and surgical management of internal jugular venous stenosis: a narrative review | Journal of NeuroInterventional Surgery
This one’s helpful as it mentions the compression between the styloid & C1, & how a C1 shave was needed as well as the styloid being removed:
Another Paper about IJV Compression - General / Research Papers - Living with Eagle
HO; COGNETTI et al. (2015) - Styloid/C1 transverse process juxtaposition as a cause of Eagle’s syndrome – Article about Eagle’s syndrome caused by styloid processes being close to the C1 - General / Research Papers - Living with Eagle
And one by Mr Axon:
Dr. Higgins & Dr. Axon : Spontaneous Intracranial Hypotension Complicated by Subdural Effusions Treated by Surgical Relief of Cranial Venous Outflow Obstruction - General / Research Papers - Living with Eagle
Hopefully some of these will be helpful!
Haven’t had that no - not sure if i see any reason to either?
None of the doctors disputes that my IJV’s are compressed - they only dispute that it would lead to symptoms, as a lot of people has compressed IJV’s…
Because elevated pressure gradients provide evidence that decompression of IJV would provide symptom relief
It’s probably hard to get that testing done in Denmark…doesn’t sound as if they’re very up on IJV compression…
Ah, but would it show anything else than the IJV pressure gradient? Or would it also show whether the collaterals actually are providing sufficient drainage? Because if the latter is the case, then I guess it makes sense!
Summary (in English, including flow velocities):
Ultrasound of the neck and intracranial arteries shows normal findings, with normal blood flow in the carotid, vertebral, and basilar arteries on both sides. Flow remains stable during head rotation.
Anyways, here is what the neurologist doing the ultrasound wrote in my journal:
“”“”"
The jugular veins on both sides appear relatively narrow in a neutral head position but increase in size and flow when the head is turned:
The significance of these changes is uncertain. No abnormalities were found in intracranial circulation.
“”“”"
Is this the same info that a IR venogram with manometry would provide?
Thanks