Thank you @KoolDude appreciate and totally agree with the patience thing. That’s why I keep trying to remind myself because I am running low on it for sure.
@Jules @Isaiah_40_31 thank you both. I’m definitely not thrilled at going back so soon. The Dr initially said 2 weeks! There was no way so I had to fight as it was for the extra week. I had a heck of a time with my paperwork and honestly it’s still a mess. So I just can’t deal with it and or risk my job. I don’t necessarily feel ready but really am in dilemma . My job is high stress and demanding the only perk I have is I work from home. However, doesn’t make it any less stressful I can tell you that.
I appreciate the continued thoughts and prayers this cold or whatever I have going on is most certainly not helping anything. Hope you both are doing well. Appreciate you both, don’t think I have said that lately. 
We are so glad to be here for you, @Ddmarie. 
I’m glad you get to work from home. At least you don’t have to add a stressful commute to your work day.
Jules & I are a team. We went through ES & surgeries at the about the same times & now have the pleasure of moderating together though Jules has been a mod for a couple of years longer than I have.
@Ddmarie hopefully you will pace yourself and not overwork. Remember that healing takes time and resting is vital in the early weeks. Wish you luck with work.
Will keep praying for you, and you’ve been a great support on here to others too 
Thank you, I really appreciate that. I don’t plan to go anywhere either. 
Hello,
I remember seeing posts from members about Nutcracker Syndrome but can’t seem to find them again. Is there an association between Eagles Syndrome and Nutcracker Syndrome that individuals have found? The two seem to be anatomically unrelated but my upper cervical chiropractor said C1 instability is related to low kidney function so maybe it is related? I
I don’t know that anyone has made a direct connection between ES, Nutcracker Syndrome & AAI/CCI, but we have a few recent members who’ve found out they have both.
This research paper uses “Nutcracker” to describe the jugular variant of ES. Made me wonder if the author is subtely making a connection between ES & Nutcracker Syndrome involving the kidneys? Styloid Jugular Nutcracker: The Possible Role of the Styloid Process Spatial Orientation—A Preliminary Morphometric Computed Study - PMC
Here’s another link that looks interesting. I didn’t take the time to read it yet:
Thank you for your reply and for sharing the link to the article which I had also found in my search. On another note, I had a consultation with Dr. Cognetti today and am awaiting a date for surgery. His nurse informed me that I will be reimbursed for the consultation fee as Dr. Cognetti doesn’t charge for telemedicine, out of country consultations. He was very pleasant to speak with and is very open minded and willing to learn.
Also found this article:
“The uniqueness in our patient is the combination of arterial Eagle syndrome with venous nutcracker internal jugular syndrome due to the concomitant elongated transverse process of the right C1”
I’m glad you found the paper. It’s a good one. We actually have the link to the article you just shared in our Research Papers link. It was useful for me to help one of our members as Prof Sultan is an ES surgeon in Ireland. There is a lack of ES knowledge in that country just as you’ve found in CA.
Great news that you’ve had your consult w/ Dr. Cognetti & will soon have a surgery date. That’s a giant leap forward!
good news that Dr Cognetti is going to help you! Let us know when you get a date for surgery; is it likely to be a while, he seems to be pretty busy?
So finally I got chance to update everyone about my case. After going through Styloidectomy with Dr cognetti my IJVS symptoms persist. Although the recovery from the operation was quick and uneventful, I did not get the benefits I was looking forward to. Long Story short, My doctor who is actually the only one familiar with IJVS in where I live has proposed to put an stent after discussing it with other doctors but I refused given the C1 involvement of my compression. They thought it was soft tissue and ligament (here they mean Digastric muscle) at C2 but I tried to explain to them that the C1 is pushing my left IJV to posterior belly of Digastric muscle as I will show you in the coming images. When I demanded them to trim the C1, they thought it was too risky, they could not do it since it was near the Vertebral Artery (See the note from their discussion below). I insisted stenting won’t work because of the C1 and it will be crashed and will even make things worse. I will only entertain that option once I get the C1 out of the way to give the stent a chance to work which they agreed at end.
So what happens if stent is put while there is C1 compression present. I will take an example of one of the members in this forum - (@Tikimon - whose stent was put while both Styloid and C1 were present (Very common practice within vascular doctors not familiar with bony compression). After symptoms remained unchanged, he sought to remove the Styloid in order for the stent to work. Styloid was removed by Dr Cognetti but C1 remained. Things have not changed for him and he posted the following image where you can see how the C1 is really pushing the stent and the thinning/narrowing lumen of the vein can be seen inside the stent. He was seeking to remove the C1 and I have not heard from him since. Simple, I did not want to end up like that.
Here is the note from meeting of my doctors on my condition.
As you see my images below, keep in mind the @Tikimon’s case. You will see that the C1 is pushing my left IJV and would have crashed any stent that would have been put in.
Jan 2023 CTV: Just before the C1 compression, my left IJV appears to be fine (Light Blue Arrow). This is how the vein should look like at the C1 level if it is not compressed by it
The picture is different, when my IJV (Light Blue Arrow) at the C1 level. As you can see, the C1 (Red Arrow) is pushing it towards the posterior belly of digastric muscle (Cyan Arrow). It is clear that the C1 is stretching it and compressing the IJV
Jan 2023 CTV: Here are the 3D rendering of it . The red circle is where the digastric muscle is and you can see the compression of the whole segment all the way up to the Jugular Foreman.
So, I just wanted to let anyone know that sometimes even the best of doctors with good intentions will not do the research for you when it comes to IJVS. You need to educate yourself about the potential consequences of any intervention and its long term effect. I am not saying C1 trimming is risky free or minor surgery but in my case, it makes sense even if stent was to work post C1 surgery.
@KoolDude I was just thinking… So if the C1 transverse process is trimmed, but the posterior head of the digastric is not resected, won’t it simply push the IJV further towards the C1 until the equilibrium between the muscle pressure and blood pressure through the vein is reached again?
I don’t want to be devil’s advocate here, but it feels that just trimming the C1 might not help either.
Can you remind me if you got any relief after lumbar puncture or after the IJV was ballooned to ensure the problem lies solely within the realm of IIH, and that’s the solution? Could it be that in reality there are some problems with arachnoid granulations themselves?
@vdm good question, no one knows how things are going to look like post surgery but I am thinking if the C1 is trimmed, the IJV will move to the new space created, away from the digastric muscle. I am thinking the digastric muscle won’t expand to compress the IJV again. Again, we will have to see as this is just my thinking.
This can only be answered after the surgery but even if it does not help, then I can safely pursue stenting not fearing any other bony compression that will render the stent dysfunctional.
I never had LP or Ballooning (My vascular doctor does not do Ballooning, he prefers stenting as he thinks ballooning is waste of time since it has high failure rate). I do have a number of IIH related symptoms, specifically IJVS IIH type symptoms. Arachnoid granulations are problem if they become too huge and almost blocking brain sinuses (Mostly SSS, TS or SS). While I do have minor arachnoid granulations like most of the people, I do not think they are significant enough to warrant addressing.
How about performing venography with gradient measurement and identifying all the compressed spots before undergoing really risky procedure? From what I’ve read on all the FB groups, shaving C1 is freaking risky and some people end up with a bunch of new problems, not counting some butched surgeries where wrong part of the vertebra is removed…
This is very valid point. I am not on facebook so I do not have a lot of data on C1 patients there as you do however, that is why I am doing a research on all the doctors who perform this procedure so that I choose the one I think has the best record. Obviously it is not easy job since they are so few but I am taking my time to make a calculated decision. I will post my finding on here once I decide on a doctor.
The reason why I do not want to do venogram is, A) I still have the same symptoms as before and since I did one prior to my Styloidectomy surgery, I did not feel the need to reconfirm what is visible on my Jan 2023 CTV. B) Catheter Venogram comes with a risky too (Strokes, dissections, etc). So it is not benign either. This procedure is not done routinely but it only makes sense to do it again in my case when the cause lies somewhere else (like upper sinuses) and the IJV has openned up after the Styloidectomy surgery. In my case, it is clear from the imaging that Collaterals are still draining indicative of the C1 compression and it is visible that my dominant left IJV is collapsed around C1 area. C) Even my vascular doctor did not think it was needed.
I do agree with you that stenting seems pointless while the C1 process is compressing your IJV so much…I hope that you find the right doctor to help you & that you can get an improvement in your symptoms…You’ve done so much research & advocated well for yourself, and helped so many others on here while feeling unwell yourself, you really deserve to have successful treatment…Best wishes 
How about a VP shunt? These are at least reversible to some extent, though of course risky too.
The real reason I am trying to encourage you to explore all the possible options is because if I remember correctly, you have total loss of cervical lordosis, and stiff shoulders, which means the muscles and vessels in the neck are under constant stretch tension. Which means that even if you make more space for the vein it might not necessarily be sufficient to overcome the stretching forces that are more subtle than simply a bulging muscle (you know that from physics). And that may lead to the rabbits hole, first C1 resection, then stent, then scalenes, thoracic outlet, and finally neck fusion which may trigger new onset of IIH.
Out of curiosity, does any IIH medication work?
Good question. I think VP shunts are generally used for IIH caused by CSF over-production or poor absorption of CSF such as Hydrocephalus. It is also used when CSF is increased by trauma to the brain. Many of these patients do not have venous outflow obstruction. In other words, their Brain sinuses and Jugular Veins are fully open. But folks like us with venous outflow obstruction, we have an identifiable cause that could be potentially treated by either surgery or endovascular procedures so VP shunt is not necessary. Furthermore, our CSF load is typically less than the one with the folks that suffer from CSF over-production or poor absorption (Assuming we have only outflow obstruction but not combination of one of the other two causes) according to many studies. I speculate that this could be due to not having CSF over-production or poor absorption like the other group. I also speculate that patients of venous outflow obstruction not only suffer from IIH but they also have occult blood circulation issue since IJVs + Brain sinuses drain both (CSF + deoxygenated blood) and any obstruction will hinder the drainage of both. Where poor absorbers and CSF-over-producers only have CSF accumulation but not excess deoxygenated blood sitting in their brain or neck organs since their outflow is working just fine. This is why IJVS patients suffer from a variety of symptoms (possibly related to venous hypertension) that usually do not affect typical IIH suffers with no venous issues. One example is IJVS patients have high risk factor in suffering from clotting in their upper sinuses than typical IIH suffers.
Good one as well and I am grateful to you for taking the time ask a lot of valid questions. I really had no other pathway I could think of when it comes to addressing my compression. I had to go with the obvious and then worry about any residual issues. C1 shaving has always been second to Styloidectomy in my algorithm of decompressing my left IJV. Stenting was the last resort. Don’t want to fall into the rabbit’s hole either but I can see an actionable compression between C1 and Digastric muscle now.
Acetazolamide and topiramate do work for patients with excessive CSF fluid in the brain and are FDA approved to reduce CSF production (meaning they proved to be effective). However, I tried them for a period for 500mg Diamox (acetazolamide) and I did not feel meaningful reduction of my symptoms but got a brand new ones (tingling of the hands and tongue to name a few). I could not eat well either so I quit after a month. I think they do reduce CSF production but do nothing on draining deoxygenated blood pooling on the compression areas or staying in the brain hence our symptoms (my speculation).