I’m sorry, my mistake. Otherwise, I have problems in my life with the orientation of the left and right sides, especially this in the images which is reversed, and also the fact that the right side is dominant.
Shaving the right side would make sense, it can even be seen that C1 is rotated and that is the main reason for the compression on the right IJV.
But you state several times that your complaints are more on the left side, so you should talk to the doctors about it, what to do about it.
Complaints from VA are dizziness and many of them coincide with IJV and ES compression. But this much pain cannot be because of that.
They didn’t mention the risk of stroke to me, but you can research it now.
The therapy is Piracetam, which improves the cognitive abilities of the brain. It reduced my dizziness, improved my vision, concentration and memory.
I believe that this medicine also helps me with the problems caused by IJV compressions, because it is a psychostimulant.
I use vimpocetin to improve microcirculation.
Other medications are for pain, relaxation, and digestion.
I haven’t asked for a lumbar puncture yet, I’ll consider that in future checkups.
I have eye problems, optic nerve damage, and double vision. I have regular checkups and we’re monitoring, so we’ll see…
Neurosurgeon Dr. Kamran Aghayev in Istanbul, Turkey is well versed in Eagle Syndrome among other disorders of the head and neck and he offers online consultations. He’s included on the list of surgeons shared here on the forum. At one point I even considered reaching out myself, and I may still, I am in the US. I realize it isn’t especially close to you, but it might be worth looking into as an option. His website is kamranaghayev.com.
Yes I don’t know whythe pressure & pain on my left side of the head are WAY more intense, since day1! (Maybe because my left side is hypoplastic and because of the strong IJV compression on my dominant side (right side) more blood flow is forced to pass thru the “thin”/hypoplastic left side which causes issues… hmm I don’t know at all just thinking about theories)
You meant “it’s not just because of narrow vertebral artery” right ?
Yes, especially that Dr. Aghayev is the only one I’ve heard about so far (if there are others please tell me) that does C1 shaves instead of just styloidectomies. In Europe or close to it (?)
I already contacted his receptionist via message, but he’s been slow to reply since I’ve sent him my infos not sure why ://
Yes I don’t know whythe pressure & pain on my left side of the head are WAY more intense, since day1! (Maybe because my left side is hypoplastic and because of the strong IJV compression on my dominant side (right side) more blood flow is forced to pass thru the “thin”/hypoplastic left side which causes issues… hmm I don’t know at all just thinking about theories)
You meant “it’s not just because of narrow vertebral artery” right ?
Yes, I find that’s usually how it go’s. Dr. Aghayev probably doesn’t even know about your case at this point. Sometimes it helps to do a follow up call, put a voice and story with your name. I hope you hear back soon.
While I was still in the diagnostic phase, I asked the neurologist if vertebral arteries could cause such daily pain that I would have to take pregabalin. The answer was no and that there must be some other problem.
Had a virtual consultation with Dr. aghayev today, he already analyzed my CTV & CTA images beforehands. He directly confirmed that I had a serious compression of my IJVs! Especially on the right side, mainly because of the C1 transverse process (and that the styloids acts like a “wall” in my case, that the IJV is pushed against, instead of it being the main culprit). He also read some of my symptoms and said they can be usual with IJV compression/Venous outflow disorders. He also noticed that my collateral veins where taking a LOT of extra blood flow, and were really prominent and he said that’s also usually a big sign of IJV compression/accompanying finding. (And he also confirmed that most of my blood flow from my brain is draining thru the right sigmoid sinus)
He confidently recommended a chirurgical intervention for my case, that consists of C1 shave + styloidectomy (on both sides if understood correctly). As for the styloidectomy only he said “you might have some partial improvement (but not recommended for my case basically)"
I asked him about C1 shaves resulting in potential CCI in the future, from what I read online and these groups and he didn’t seem to agree with that at all. I also asked him if my case was caused by cci/aai in the first place, and he said he can’t say anything as there’s no data and that stays speculation. He also said for my age any CCI surgery is not recommended because you lose 50% range of motion & other stuff.
I got a bit surprised when I asked about meds that could alleviate my suffering by a little bit at least (because i literally can’t take it anymore, I barely sleep and suffer deeply 24/7…), I asked about Blood thinners (like mentioned here) and Diamox. He didn’t recommend blood thinners at all, clear no for him. He said doctors prescribe it too easily for these cases when it shouldn’t. As for Diamox for my case he said that he wasn’t a big fan because it could be dangerous and lots of bad side effects, not to be taken lightly, he said it could alleviate some of the pressure but to be careful if I do. He didn’t seem to want to recommend any meds or I would suppose he would have told me : /
No clear 'radiological’ signs why my head sufferings are a lot worse on my left side (pressure, inflammation, tinnitus etc) according to him.
There was a bit more said but overall that’s the jist of it. Overall I am happy with the consultation and I respect his experience in this field and I am really relieved that he confirmed my suspicions. Do I have more issues/problems going on in my head/neck ? maybe/probably, but at least getting to know one of the big reasons is relieving.
Glad to hear about your consult! Sounds like the surgeon is on the same page as we were! I agree with him suggesting C1 shave for you. It’s pretty evident from the axial view of C1 that I annotated for you that the transverse process of C1 is pushed up against your IJVs on both sides.
This is the best news I have had all day, I am so happy for you. Answers! Hope!
Is he close enough that you can consider having him do the surgery? I would trust him without a doubt based on what I have read about him. I wish I lived closer.
it’s a 1h20 drive to the airport + 3H30 flight. So definitely not a car-journey thing. But considering he’s an expert in that field it isn’t a problem for me, what worries me more is the co$ts. As it’s a private clinic and outside belgium/EU, my country’s health insurance wouldn’t be able to refund anything. Considering I am a young guy that had short “career” before being forced to stop my job the financial aspect is obviously (& sadly) at the top of my equation… If i had the finances I’d already be decided today to go with him, but that’s not the case for now
@ryanab - I’m really happy to hear about your great consult w/ Dr. Aghayev, but sad to hear about the financial barrier that has kept you from being able to schedule surgery with him. In the US, most hospitals & doctors’ offices will allow patients to set up a payment plan to pay off large bills a little bit each month. I know you’d be in a different country to get surgery, but it would be worth asking Dr. Aghayev’s office if something like that would be possible.
Good that you felt confident with him & his opinion, but so frustrating the cost is prohibitive for now… Is there any sort of appeals process which would fund surgery if it’s not available anywhere in your country? Sending you a hug
(For EU:) Under very rare conditions yes, it’s hard but you have to prove them that no one can do the surgery in your country and have letter reports from many of big university hospitals proving they can’t do the surgery + convincing the health insurance’s doctor that should approve that the surgery is vital/needed. (& outside of europe there’s no solutions) so not an easy thing to do neither : /
In Belgium from my research there seems to only be Dr. Ladner in Brussels, (he doesn’t do c1 shaves, as my case seems to need a c1 shave. It’s sad as surgeries in BE are totally refunded) but I’ll have a consultation with him next week, and I hope that he’ll also add a complete report on my belgian-shared-medical-file so other belgian doctors can understand what has been discovered and the real issues I have. (the last thing written on it by neuros is that I had occ. neuralgia and that I am a stressed person that has been prescribed depression meds. )
I also booked a physical appointment with Dr. Nils Heim in germany next week. (350€)
I like the fact that appointment times with these specialists are usually fast, not sure if it’s the case for all of them but in the context of my research I also checked appointment availabilities with Dr. Axon in the UK (300€), they’re quite fast as well. (altho expensive, at least for first consults). For now I chose to do a physical-consultation with Dr. Heim instead of going with the virual consult with Dr. Axon, (not sure if it’s good choice ?).
It’s a difficult decision & not a small amount of money to be spending on consultations! I can only speak for Mr Axon in that I know he has done some C1 shaves… Unless there’s any spinal surgeons you could find in Belgium?
There’s one research paper written by doctors in Belgium, might be worth looking up them: A rare vascular complication of Eagle syndrome highlight by CTA with neck flexion - PubMed
Thanks @Jules , just looked up the authors of the study they are all radiologists (& interventional radiologists). It might still be interesting to have an appointment with one of them for a discussion.
As for comepetent spinal surgeons doing c1 shaves here, i am not aware of it (yet) but maybe that’d be an interesting topic to ask Dr. Ladner (belgium) about.
@ryanab - We have heard that Dr. Martini recently did a styloidectomy w/ IJV decompression (can’t remember about C1 shave though). He would be a good doctor to have a consult with.
•Dr. Markus Martini at St. Lukas Klinik in Solingen/Germany,
Mund-, Kiefer- und Plastische Gesichtschirurgie, https://www.martini-klinik.de/en/contact - works together with Dr. Sarah Neering
He directly confirmed that I had a serious compression of my IJVs! Especially on the right side, mainly because of the C1 transverse process (and that the styloids acts like a “wall” in my case, that the IJV is pushed against, instead of it being the main culprit). He also read some of my symptoms and said they can be usual with IJV compression/Venous outflow disorders. He also noticed that my collateral veins where taking a LOT of extra blood flow, and were really prominent and he said that’s also usually a big sign of IJV compression/accompanying finding. (And he also confirmed that most of my blood flow from my brain is draining thru the right sigmoid sinus)
(because i literally can’t take it anymore, I barely sleep and suffer deeply 24/7…), I asked about Blood thinners (like mentioned here) and Diamox. He didn’t recommend blood thinners at all, clear no for him. He said doctors prescribe it too easily for these cases when it shouldn’t. As for Diamox for my case he said that he wasn’t a big fan because it could be dangerous and lots of bad side effects, not to be taken lightly, he said it could alleviate some of the pressure but to be careful if I do. He didn’t seem to want to recommend any meds or I would suppose he would have told me : /
In Belgium from my research there seems to only be Dr. Ladner in Brussels, (he doesn’t do c1 shaves, as my case seems to need a c1 shave. It’s sad as surgeries in BE are totally refunded) 
)
I also booked a physical appointment with Dr. Nils Heim in germany next week. (350€)
(300€), they’re quite fast as well. (altho expensive, at least for first consults). For now I chose to do a physical-consultation with Dr. Heim instead of going with the virual consult with Dr. Axon, (not sure if it’s good choice ?).