Here is study from UK’s best doctors for Eagle Syndrome Dr. Higgins & Dr. Axon. This is a case of CSF Leak caused by Bilateral Jugular Vein Compression by C1 Transverse process. The 56 year old patient suffered headaches and as his cognition and memory became impaired, he had to stop work. Eventually, he was confined to bed, most of the time spent asleep. After going through bilateral Styloidectomy and C1 resection, his symptoms resolved.
It is also interesting for those who want to know the details of C1 drilling and the care given to the Jugular Vein during the procedure. These doctors detail the procedure nicely in this study. You can almost picture how they do it. They also talked about how the patient felt unwell for 2 to 3 weeks after the first surgery on the left. He felt a complete resolution after going through the second styloidectomy & C1 resection.
First patient that went through bilateral C1 resection with Styloidectomy I have ever seen. Usually you will see bilateral Styloidectomy but hardly bilateral C1 resection.
Makes me wanna go to London for Dr Axon & Dr. Higgins
KoolDude,
They are an excellent team & you wouldn’t go wrong seeing them. We don’t even have a team like that in the US. As good as Dr. Hepworth is, he doesn’t work on C-1 nor does he have an associate who is willing to do that as far as I know.
@KoolDude thank you for providing that link!
I’m very glad to feel like I’ll be in safe hands with Dr Axon and Dr Higgins.
I was talking to someone who had vascular eagles and had a styloidectomy under Dr Hepworth. Her C1 transverse process was a major contributor to the compression also. But she said Dr Hepworth was able to ‘unhook’ the jugular vein from C1 - since he doesn’t shave C1 at all.
Can someone explain to me how ‘unhooking’ the jugular vein from C1 would work? It wasn’t wrapped around C1 at all, the transverse process was just pushing into the jugular vein so I don’t understand how it could be ‘unhooked’? Is it possible to move the jugular vein anteriorly away from C1?
Regardless, she’s had massive improvement and her quality of life is back. So whatever Dr Hepworth did worked!
@Dontgiveup i am glad that you find this article helpful and I am sure you are in great hands I would go as far as saying that Dr Axon & Higgins are by far the most experienced for Vascular Eagle as they also take care of the C1 which many others don’t seem to do.
As far as unlocking goes, I really do not know what that is and can only speculate what it means. I know from studies I read such as this one, that Jugular Veins gets stuck on the C1 muscle layer due to prolonged compression by the Styloid on one side and C1 on the other. So really do not know if Dr. Hepworth simply frees the Jugular Vein from its adhesions to the surface of C1 and let expand on the freed space of the Styloid area or if he simply moves it away from the C1 area.
This all depends on your compression type and if you
had only 40% from C1 and 60% from Styloid, the removal of the Styloid alone would yield substantial relief is my assumption. But if you had the other way around things might not improve
@KoolDude thank you. Your speculations/explanations make sense to me. It’s interesting to hear that the guy in the report only got full resolution when both sides were done. Which only mirrors a lot of other peoples experiences too. I think he was smart to get the other side decompressed and avoid a stent.
It’s just weird to me how it takes a minor injury, or small stretch - if that - to suddenly go from a functioning human to completely bedridden. And in his case, he only bent down to tie his shoelace?! Obviously the compression had to have been there for some time. And that was the straw that broke the camels back. So weird that it just happens like that. Then again, why does anything happen?
I would be really interested to know if there are circumstances where Dr Axon is able to free the jugular adhesions to the surface of C1 without shaving C1 down. I guess it would be dependent on the type of compression, as you’ve mentioned.
Still petrified of the thought of my C1 being touched. Can’t remember if I’ve mentioned it before, but my C1 naturally fused to my skull as a congenital anomaly so I’m not sure if that causes any risks at all if my C1 does need shaving.
I wonder how the jugular could simply be moved away from C1… I can’t imagine there’d be much space to bring it forwards with all of the other structures in the neck.
How do you find out how much compression you have being caused by both the styloid and C1 to know which one is most responsible for the compression? Can they detect it through a catheter venogram or is it only really detectable during surgery?
@Dontgiveup i think I would discuss the concerns around C1 with Dr Axon I am pretty sure he is taking all things into consideration.
Regarding this patient, you could see in the MRI (1 & 2) that his entire brain is squeezed in the middle by CSF fluid around brain dura which could not be drained properly causing all his symptoms. He did feel normal enough to go back to work after the first surgery so that was improvement and you could see his third MRI image that the brain was able expand normally and no longer squeezed in the middle after the first surgery so I think there was significant improvement after first surgery. The second surgery improved the residual cognitive & memory impairment.
If you read this study, the
Doctors sort of imply the adhesion here and that is what doctors mean draped over the muscles
BlockquoteThe posterior belly of the digastric was drawn anteriorly and dissection continued posterior to the muscle until the prevertebral muscles were identified overlying the transverse process. Care was taken not to injure the internal jugular vein, which occasionally can be draped over these prevertebral muscles.
I think when they do the Catheter Aniogram they can somehow quantify the narrowing by looking at Styloid and C1 compression more clearly and also during the dynamic movement of the head, they can tell how much from Styloid vs C1
@KoolDude ahh, yep, that makes sense. Thanks for explaining that.
I’ve definitely got a lot of questions to ask. When I do eventually have my catheter venogram and I get to ask questions, I’ll report back. I’ll share any info that might be of further help to everyone here.
If anything the report you shared has just helped reassure me more than anything about the procedure. Thanks again.
Hey @KoolDude do you know anything about whether Jugular compression causing IIH can cause endocrine disorders? I imagine that if it can prevent CSF flow and potential swelling of the pituitary gland, then it can also cause hormonal related issues?
@Dontgiveup I have not done a lot of research in this area but it is possible since flattening of the pituitary gland can impact hormone production. It is also very complex topic as some folks with IJVS do not have partial empty sella or empty sella which is a marker for pituitary flattening of the CSF fluid. So in theory it is possible to develop hormone issues if your hypothalamic-pituitary-adrenal (HPA) axis is affected by the increased CSF pressure on the brain.
Well, if you discover an empty sella on MRI as neurologist/ get the radiological report, it‘s standard protocol to refer the patient to an endocrinologist to check the hormones.
You may have no endocrinological problems, or even fluctuating ones, due to Hypo/Hypertension/ CFS- Leak cycles.
First of all your prolactin-levels could change, as there is often hyperprolactinemia occurring with Empty Sella. This can cause breast swelling, prominent PMS and galactorrhea. Also you could notice menstrual irregularities.
You might get secondary problems with the other hormones, too, like hypoadrenalism or other…
@Dontgiveup This is a very interesting discussion. With my last child (27 years ago) I had a sudden “ worst headache of my life episode. The most likely diagnosis they gave me at the time was “ lymphocytic hypophycitis”.
A sudden infiltration of WBC into the pituitary. This headache lasted for weeks and slowly subsided, has been intermittent since, I think. This happened during labour. My hormone levels were very very low when tested, but resumed fully by 3 months. And I felt well. I also have long term type one diabetes My current and constant headache of the last 3 years is in the same area- forehead, as time goes on I’m having pressure and pain in more areas of my head. In all of my recent testing in Toronto, there were no requests by physicians to enroll in studies… this seemed strange to me. Wouldn’t they want to learn more about a rare disease?
