Hello, I was wondering if you consider Dr. Aghayev to be as good as Hepworth, because the cost for foreigners to see Hepworth is far too high. Thank you very much.
Hi Jordan⊠both doctors have done successful surgeries and have helped many members. They have slightly different techniques & âspecialitiesâ ; Dr Aghayev does remove much more of the C1 transverse process which has helped with IJV compression, Dr Hepworth has been more cautious in his approach, which sometimes hasnât always been enough to help with IJV compression. Dr Aghayev is very knowledgeable about TOS and does this surgery too, Dr Hepworth is very knowledgeable about CSF leaks for example, but neither of those are probably relevant for you anyway? I think from what members have said on here, Dr Aghayevâs office is more efficient, he has a much shorter waiting time and certainly his staff are well used to looking after international patients, I donât know if Dr hepworthâs office are, and it certainly seems like itâs much harder to get appointments and to get answers from communication with them.
But itâs about who you feel confident with as well.
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Thanks for your reply :) And regarding the styloid process, do you happen to know who removes more of it? I ask because Iâm in horrible painâitâs affecting my trigeminal nerve too. Thanks again.
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@Jordan - I believe both Dr. Aghayev & Dr. Hepworth remove the styloid above C1 when there is IJV compression, but it may depend on what each doctor sees is necessary during surgery. You could certainly ask Dr. Aghayev the question about how short he cuts the styloids since heâs the doctor you can afford to see.
Because you would be coming so far from home for surgery, I do agree w/ @ Jules that your medical experience might be better by going to Dr. Aghayev since Dr. Hepworthâs office communication can be slow & has been very frustrating for some of our members.
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Iâm sure that they both remove as much as is safe to do. There are occasions unfortunately when itâs too risky to remove it any higher because of the nerves around- everyoneâs anatomy varies a little bit, so itâs often not possible to know until they start surgery.
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Thanks for your replies. Dr. Hackmann would be willing to operate on me too, but he says there is no compression of the jugular vein; thatâs whatâs holding me back, because Aghayve tells me there is severe compression :/ Itâs strange. Thanks :)
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And yet, I don't have any symptoms like head pressure or anything like thatâI just don't understand :/ . My issues are neurological (trigeminal), hyoid, and muscular. Thanks.
@Jordan - You have some collateral veins that have developed on the left side which could indicate IJV compression, however, your left IJV is so small that it isnât draining nearly as much blood from your brain as your right IJV thus it may not be causing any symptoms. There are no collateral veins on your right side, and it appears to be pretty wide open, even if it looks like itâs being slightly compressed by C1.
In the absence of vascular symptoms, I think just having your styloids resected close to the skull base would help resolve or reduce your nerve symptoms. If vascular symptoms develop later, you could deal with them then. No point in going through the extra surgery to decompress your IJVs if they arenât causing symptoms.
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Hello Isaiah, and thanks for your reply. What are the typical symptoms of compressed jugular veins, please? Thanks again.
After three failed surgeries, Iâd really like this one to be the right one :/
I completely agree that you want this surgery to be right, itâs been a journey for you & to have no improvement in symptoms is hardâŠ
The symptoms of IJV compression are head and ear pressure, feeling like youâre underwater, that clogged ear sensation, brain fog, dizziness, off-balance feeling, feeling out of it, a bit drunk, pulsatile tinnitus, these are the more common ones. If the head pressure is quite high then you can get weird symptoms like feeling like youâre falling, sucking sensations in your head, feeling like your falling.
Itâs difficult to make the decision with what to do for surgery, I guess itâs a question of who you feel most comfortable with and who you trust?
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Hi @Jordan, I assume you had a left sided styloidectomy because you had facial pain on the left side of your face ? Is your facial pain still on the left side if this is the case ?
What is striking on your CT scan is the overdeveloped collateral veins on the left side yet your left internal jugular is small compared to the right and there is no internal jugular vein compression obvious on the left side as @Isaiah_40_31 observed.
Have you had a brain MRV or CTV to check to see whether or not you have venous obstruction at the level of the left jugular foramen ? If you do, this will show up as a narrowing at the left jugular foramen and a dilation of the upstream sigmoid and petrosal sinuses in the brain.
The petrosal sinus is very close to the trigeminal ganglion thus causing face pain on the same side.
When there is venous congestion in the petrosal sinus the cerebral venous blood seeks a detour leading to increased venous flow in the vertebral venous plexus and the formation of visible collateral veins around the C1 region on the same side as the jugular foramen affected.
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Hello Emerald. Yes, my pain is still on the left side; it's excruciating. What do you mean by an MRV or CTV? I'm French. If you're talking about an MRI, then yes, I think I've had one. How do they view the petrosal sinus? Thanks a lot.
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Il est possible que lâangioscanner ( CTV, TDM avec contraste) que tu as dĂ©jĂ rĂ©alisĂ© au niveau du cou montre le foramen jugulaire et Ă©ventuellement certaines veines cĂ©rĂ©brales. Sinon, il faudrait demander un vĂ©no-TDM cĂ©rĂ©bral (ou angio-TDM veineux).
Votre mĂ©decin Ă©crira sur lâordonnance : « angioscanner cĂ©rĂ©bral veineux », « angio-TDM cĂ©rĂ©bral veineux » ou « angio-tomodensitomĂ©trie cĂ©rĂ©brale veineuse."
Un MRV est une vĂ©no-IRM cĂ©rĂ©brale (vĂ©no-IRM par rĂ©sonance magnĂ©tique, angio-MRV), câest-Ă -dire un IRM avec produit de contraste permettant de visualiser les veines cĂ©rĂ©brales. Elle diffĂšre de lâangio-IRM cĂ©rĂ©brale, qui met en Ă©vidence Ă la fois les artĂšres et les veines.
Si vous avez une congestion veineuse dans le sinus pétreux à gauche, une décompression complÚte de votre jugulaire interne à droite (styloidectomie et C1) va aider à résoudre votre problÚme car la circulation à droite et à gauche dans le cerveau sont liée.
Si vous avez besoin de faire dâautres examens et sâil est possible, je te conseille de contacter
LâHĂŽpital PitiĂ©-SalpĂȘtriĂšre Contact pour rendez-vous IRM/Scanner : 01 42 17 84 70
- Adresse : 47-83 boulevard de lâHĂŽpital, 75013 Paris.
PS : Sâil est compliquĂ© pour vous dâaller Ă Paris, vous pouvez demander Ă @Veroguilnec oĂč elle a passĂ© ces examens pour voir ses veines cĂ©rĂ©brales. Elle peut vous donner des conseils.
TRANSLATION:
The CT angiogram (CTV or contrast-enhanced CT) of the neck that you have already undergone might show the jugular foramen and possibly some cerebral veins. If not, you would need to request a cerebral CT venogram (or venous CT angiography).
Your doctor will write one of the following on the prescription: âcerebral venous CT angiogram,â âcerebral venous CT venogram,â or âcerebral venous computed tomography angiography.â
An MRV is a cerebral MR venogram (magnetic resonance venography)âessentially an MRI with contrast dye used to visualize the cerebral veins. It differs from a cerebral MRA (MR angiography), which highlights both arteries and veins.
If you have venous congestion in the left petrosal sinus, complete decompression of your right internal jugular vein (styloidectomy and C1 decompression) will help resolve the issue, as the cerebral circulation on the right and left sides is interconnected.
If you need further tests and it is feasible for you, I recommend contacting:
PitiĂ©-SalpĂȘtriĂšre Hospital (Contact for MRI/CT appointments): 01 42 17 84 70
Address: 47-83 Boulevard de lâHĂŽpital, 75013 Paris.
P.S.: If traveling to Paris is difficult for you, you could ask @Veroguilnec where she had the scans done to visualize her cerebral veins; she may be able to offer some advice.
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We have had a couple of members who had a blood vessel compressing their Trigeminal Nerve at the base of the skull, so have needed surgery for this. The blood vessel can be moved off the nerve and a plate put between them, Micro Vascular Decompression (MVD), or there are other treatments like balloon compression or Gamma knife⊠I wonder if this might be worth looking into if the nerve pain is your worst symptom? Usually this is diagnosed with an MRI, a FIESTA MRI / Ciss MRI can be used to see more detail.
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Thanks for that info @Emerald
Bonjour Ă©merald , merci beaucoup pour tout ces info et le temps que tu as mi pour me rĂ©pondre câest vraiment adorable , tu marque une dĂ©compression total Ă droite mais câest Ă gauche les douleurs insupportable, jâai peur de toucher Ă droite mĂȘme si câest liĂ© . Merci encore
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Translation:
Hello Emerald, thank you so much for all this info and the time you took to answer me, itâs really kind. You indicate a total decompression on the right, but the unbearable pain is on the left. Iâm afraid to touch the right side even if itâs related. Thanks again.
Maybe itâs worth looking into other possible causes or your pain then @Jordan , and see a Trigeminal Neuralgia specialist? If thereâs anyone in France?
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Hi @Jordan, I was waiting for you to ask that question 
It does sound counterintuitive that decompressing the right internal jugular vein would relieve pain on the left side of your face.
But if it is that your pain is due to left petrosal sinus venous congestion pressing on your left trigeminal ganglion, this is the reason why :
The fact that you appear to have right sided internal jugular dominant venous drainage also is a factor to explain why right internal jugular vein decompression would relieve you pain on the left.
( If you had codominant internal jugular venous drainage, surgical decompression on the right would probably have less effect on the left facial pain due to left petrosal sinus congestion because in those with this type of drainage they have less interconnections in venous drainage between the right and left side via the Torcular Herophili in the brain).
Surgical decompression of a compressed right internal jugular vein relieves left-sided petrosal sinus congestion because the cranial venous system operates as a highly interconnected closed-pressure network in the skull.
When a person has a dominant right-sided drainage system, the right internal jugular vein serves as the primary drainage path for both cerebral hemispheres.
When the right IJV is squeezed (between the right styloid process and the right transverse process of C1), a massive backup of venous pressure occurs. Because the left and right venous pathways are directly linked (in someone like you that appears to have a dominant right sided venous drainage) this high pressure shifts backward and across to the left side. Redirection of venous blood into the left superior and inferior petrosal sinuses happens because the left-sided pathways become the path of least resistance rather than the right side causing venous congestion in the left inferior and superior petrosal sinuses. This congestion directly compresses the nearby left trigeminal ganglion.
The reason why the venous blood backs up in the petrosal sinuses is because as the left-sided pathways suddenly experience a massive, unnatural influx of blood from the dominant right side, the left sigmoid and cavernous systems face volume overload.
Because the skull is a rigid box, this high-volume, high-pressure blood begins seeking out every available exit on the left. The blood pushes heavily into the petrosal sinuses. They engorge rapidly under the pressure, expand into the surrounding rigid space of Meckelâs cave, and mechanically compress the left trigeminal ganglion.
When the right internal jugular is decompressed, suddenly the high pressure in the brainâs venous system drops and thus there is a sudden reduction in venous congestion in the left petrosal sinuses and no further pressure on the left trigeminal ganglionâŠno pain on the left.
So get that cerebral CT scan with contrast to show your cerebral venous network. There could very well be a light at the end of that very long tunnel
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