I hope it is okay to write this. I have recommended this group to many on IJV FB group and want to do the opposite now. There are two groups that I think you would benefit from joining on Facebook if you are a FB user:
The Brain and Spine Group for Zebras - there are many people in this groups with complex and multiple diagnoses, many who have CCI and hEDS and some with venous outflow issues
Jugular Venous Outflow Disorders (Cerebral Venous Congestion) - it’s a bit luck of the draw as this group has gotten really big, but there are also many in here with complex issues and definitely a big % with hEDS. If you happen to post and one of the geniuses who have been around for a while sees it you will get some good input, if not, give it a week and post again.
I am a Hep patient and 7 weeks post surgery. Hopefully one of the geniuses in this group will see your post and have more input than I do, but I will share what I can from my experience.
When it comes to the December surgery, take your time. I am somebody that took a lot longer than most before I committed to my surgery. And that was a good thing. That when I had the surgery I was sure that no matter what the outcome risks and all I knew that I was doing the right thing. As in, I would have no regrets if things went wrong. If you have not heard of Dr Fargen, Hui or Pastille (I might have misspelled the last one) then these are names that might help give you the confidence that you need to commit. These are doctors that are experienced at performing catheter angios & venograms and who very well understand these conditions and therefore know what they are looking at. I would actually recommend the first two the most. Even though Dr Hepworth knew that a jugular decompression, possibly both, would benefit me, I still wanted this procedure to be done on me as a final thing before I was ready to commit. The problem is that they also have a lot of people that are waiting to get in. I believe that Dr Hui is a little bit faster to get into than Dr Fargen. You will need a referral for either of them. So if you are interested, then ask Doctor Hepworth to do a referral for you. If you aren’t sure what I’m talking about then let me know and I’ll be happy to explain what this procedure is and how it can add extra information.
I’m going to pause here and just let you know that I use dictation because of problems with my arms and dictation does not always come out great. I’m also not going to go back and correct things apart from the spelling of the doctors names 
Military neck is pretty common unfortunately for those of us that have done a lot of computer work, reach a certain age, et cetera et cetera. But what’s not great about it is that it pushes your C1 forward bringing it closer to the styloid therefore making it more likely that it’s going to compress your jugular vein. That’s what happens with a lot of us and it may be what’s going on with you. Or at least a part of the story. @vdm Is incredible when it comes to reading about learning and using natural ways like physical movements and repositioning and working on posture to fix things like this. He has posted quite a lot on military neck. If you search military neck or VDMI am sure you will come across his good stuff. PSI also have cognitive stuff going on and often cannot find words so I filled the blanks by saying things like “good stuff” :).
When it comes to figuring out what surgery to do which and next step of course that’s something that only you can decide once you have all of the information that you can glean you’ll just need to weigh it up and figure out what to do.
I can tell you that dr Hepworth really is a genius. He is hands down the best surgeon at working with any complex cases when it comes to jugular outflow issues. He sees things that other surgeons don’t see, and he does not follow a 1 size fits all approach to surgery. If a patient needs a C1 shave he will do it. But as you noted and he shared with you his first option is to move the jugular vein away from C1. He does not have a plan where he automatically disconnects anything apart from shaving the styloid down. He is also extremely adept at shaving the styloid as close as possible to the skull base without damaging any of the nerves.
I am an example of how he shines. And how important it is to have a surgeon that has no specific path that he follows but has the extreme talent and skill and ability to be able to open you up see what’s happening and on the spot decide what to do and fix it. What he found in me was a whole bunch of scar tissue that was strangling the top half of my jugular vein. This is not terribly uncommon. He fixed that. It’s also not terribly uncommon to have a nerve that is involved. But he found three nerves that were all jumbled up in and amongst themselves and around the very very top of my jugular vein in the top 1 centimeter of it. He was able to untangle all of them without any actual permanent damage to any of them. That is huge. The worst of it then was my accessory nerve. It was jumbled up in the jugular but it was also wrapped around the styloid and the hyoid. He had to untangle all of that and then move it away so that it would have a new and safe home. Again, no cut happened and he did not damage the nerve. That said my nerve is really really angry right now and it’s gone on vacation. But with help of physical therapy it will be back online again in six to 12 months. If I’m lucky maybe even sooner. But chances are six to 12 months. I wouldn’t want anyone else to have done this surgery because of those reasons. There is one surgeon whose name I hear a lot of on this site who does vascular decompressions, and I know because I know some of the patients that Dr Hepworth then is sometimes having to do a follow up surgery because he doesn’t have quite the same level of experience and skill. So, all of that to say you are in great hands! You are also working with a person who can look at imaging for one minute and boom see exactly what there is to see. 10 minutes feels like nothing. And it is nowhere near enough for us patients. If he gave you 10 minutes and he was able to say ABCD and E to you then it’s because he knows for certain ABCDandE.
Like you I am left side dominant. I have very little blood flow through my right transverse sinus but it is present. Some people have only one working jugular vein and that is sufficient for them. But that one vein needs to be working well. Many many of us have a dominant vein and one that is not working or take you a lot of fluid.
So what is happening with you is that the vein that you do have that that is taking the most of your fluid is actually not working well. That is why there is a very clear need in Doctor Hepworth’s mind to first and foremost correct that problem. You might have all of these other things that are going on, but Dr Hepworth comes from the perspective of what is the thing that is going to make the most impact to this person’s life. And that’s the thing that he’s going to propose to you as the thing that you need to do. After that if there are other remaining things that’s when you would tackle that in his mind. There is a lot going on on your left side. So it seems pretty clear to me as well that if the left side is taking almost all of the fluid trying to exit your brain and it has all of those things that are impacting the flow from it then that’s going to be causing symptoms. Fix that and at least the symptoms that that is causing stand a very good chance of being resolved.
Having no flow through the right side in and of itself would not create brain damage, however, there can be problems if there is significant issues with flow. It is a known and recognized among the specialists in this field thing that those of us with significantly reduced flow have cognitive impacts from it. They talk about your brain sitting in a sewer because all of the blood that has been used is needing to exit through the jugular veins, But if the veins are blocked, or the sinuses are blocked sufficiently, then the fluid cannot exit, and therefore it cannot get back down to the heart and get cleaned out to then return as clean blood into the brain again. In other words If The Dirty blood can’t get out, then clean blood can’t get in, and we’ve got a sewer around our brain. When I heard that one it really made sense to me and it also really made sense then how we might have cognitive impacts when our brain sits in a sewer
When it comes to C S F leaks, If your fluid is not able to leave your head, then you have this buildup of pressure. That pressure builds and builds and builds and at a certain point, think of it like a hose, it’s going to sprig and leak. It can no longer withhold it. And now we have a CSF leak. So, if you go and fix that leak before you fix the actual master problem which is your outflow, then the only thing that’s going to happen is that you’re going to experience even more of the symptoms that you have today because now you’re going to have an even bigger buildup of pressure. And, guess what will happen at some point, you’ll spring another leak. So Dr Hepworth’s plan is to fix the outflow issue first wait a while to see what happens and then fix a remaining csf leaks. If your leak is in your cranial area, then it’s perfectly possible that it will actually heal itself once the jugular outflow problems are resolved.
Another thing that I love about Dr Hepworth, Fargen and Hui Is that they are all extremely adept at working with people who have hEDS. They are also very used to having patients that have complex multifaceted diagnosis. Including CCI. If your CCI is not extreme, Then it would still probably serve you well to focus where you are right now first. Having said that, I have no idea what the jaw surgery may or may not implicate. I hope that somebody on this forum happens to have done that and would be able to understand, but I’m thinking that you’re probably gonna have to ask your doctors about that. Jaw surgeon and a heworth or a Fargen or Hui.
I feel like I have written you a book and apologize for that. I do want to add that having read now a couple of times what Hepworth wrote about your left jugular vein, I don’t think that you would need to go to Fargen or Hui. I think it’s clear as daylight that his recommendation is right for you. Having said that, people on this forum said the same thing to me and I still went to Doctor Fargen
I hope that in this book there have been a couple of things that are helpful for you to read. I also hope that somebody with more knowledge can come in and tackle some of the other areas.
. Dr. Hep sent me to Dr. Yakes for an angio/venogram so I can speak first hand to say he’s AMAZING, but I did have to wait all day for my appt. which was a bit discouraging. Dr. Yakes like Dr. Hepworth, gives the time to each patient’s case that’s needed so he gets backed up & later appointments at the hospital get pushed to later in the day. It was great knowing that when it was my turn, he’d give me the time needed to do my procedure accurately.
