Next Steps Now... Identifying the source of the problem with Dr Fargen for surgery with Dr Hepworth

I wrote this for my FB page as tone will show (really for me as it pops up as a future memory…), but wanted to share here as well in the event that anyone gets anything out of it. i will say this. After the added findings of Dr Fargan, whether or not they are causing symptoms, I am very glad that I did not dive head first into surgery with Dr Hepworth (which was right away recommended). If there is one bit of advice I would give, even if you’re seeing someone who is considered at the top of the game, go and see another one as well (if you can. i know we don’t all have that luxury).

And I will add that I mean this especially if you are a VES vs ES case.

Tomorrow is a big day
Not because big things will change but because big information will be revealed.

Jesper and I arrived in North Carolina on Thursday. We are staying at the SECU house, a true gift of a place (more on that later).

We came here for our appointments with Dr Kyle Fargen, a ground-breaking cerebrovascular neurosurgeon. We had a 2hr consult with him on Friday (I was blown away that over 60 minutes of that time was actually with him!).

When he walked in the room he had reviewed all of my relevant imaging. He understands our patient population and told me to please lie down on the table for our discussion if it would be better for me (heaven opened up and just about swallowed me then).

And so for the first time since early 2019 I had an appointment with someone with serious discussion and concentration without my head exploding, my brain wigging out (more than current baseline) and being unable to even seethe questions that I had on my paper.

We are here for Dr Fargn to do the catheter angio/venogram and then a lumbar puncture. In the first he will wire a line up via the femoral artery in the groin area into my head. I will be awake and strapped down to the table a-la Frankenstein mode.

He will do two things. First he will be taking pressure measurements. If the flow of blood differs in rate, slower above and then faster below, that represents an undesirable impact. So he will measure in the head , the jugulars, and the veins blow as blood gets pushed back to the heart.

Next, he will take provocative measures, specifically in the jugulars. Here he will have me turn my head one way, then the other, and then they will lift it to try and mimic looking down. In those positions he will push fluid hard to see what if any symptoms are recreated. In someone that is asymptomatic, they will hear a wooshing sound. While someone who is severely symptomatic may contort from the sudden pain or dizziness or whatever

None of these will be the same as being upright as your head is fully supported and thus muscles relaxed on the table. But in taking these measures one can extrapolate how natural movement impacts the jugular vein and thus the flow of blood, and importantly if these are actually contributing to your symptoms. I of course want to have my symptoms get nutty because that means we have something that we might (might!) be able to fix.

On Friday he said that my situation is potentially complex as certain things stand out in the CTA/V scan that was done

  1. Transverse sinuses both have arachnoid granulation that might contribute to flow issues – he suspects this is a red hearing but needs to be looked at
  2. There is the jugular narrowing at styloid and C1
  3. The Left jugular is narrowed lower as well from the carotid artery and muscular compression (and this scan is was lying flat, so that’s muscles at ease rather than all tense)
  4. And the one that is apparently exceptionally rare and may be a doozy if it is contributing to symptoms, my brachiocephalic vein in the chest behind the sternum looks really tight and flat. (quick anatomy class: The left subclavian vein comes over, joins up with your left jugular vein becoming the L brachial cephalic vein which travels for a distance behind your sternum over to the superior vena cava that dumps everying into your very own recycling container, the heart. The vein right there (behind sternum) is very narrowed
  5. Finally after this is done he does the LP to remove fluid, lowering the opening pressure, and see if you feel better from that

Depending on what he finds, he will make his recommendation for what, if any, surgery I would need:

  1. I’m not sure what he would do if we find the granulations are an issue, but he may think a stent is an option to move more blood to the right side.
  2. This is the one I was expecting to be the issue and expecting him to have a no brainer response that I need a left styloidectomy and jugular decompression as Dr Hepworth (ground breaking peer) is recommending. Dr Fargen points out that it is common for patients who have this surgery on one side to then need it on the other because symptoms commonly increase there (I read this a lot on our group page!) and for them to go on and need a stent as the vein just can’t keep itself open (I read this a lot too – it’s common to read of someone’s improvement and then some time later they post again that their symptoms have all returned and they don’t know why…
  3. This one is tricky and not a good finding. That unlike the other veins in the head which have great support and strength in them to stay open, the jugulars are like the veins on the back of your hands. If you push on them at all they flatten, impacting flow. So where at the top you can remove the styloid (and potentially shave a bit of C1 if that is insufficient), you can’t remove the carotid artery and necessary muscles. It this is an issue, then it may require stenting. But stenting is no longer done by these Drs unless styloidecomy has failed to provide sufficient relief of the vein recollapse (happens a fair bit). The stenting that would be involved here is also highly experimental, with a small stent placed at the top and a larger one, flush below the small one, so that the entire jugular is stented. But there have been complications that have resulted in a couple of deaths from stenting the jugular, and the more likely other complications involve life long nerve impacts and pain from the stent itself. So we don’t want this.
  4. Number 4 is the worst possible scenario. If this is a source of pain/dizziness etc then we’re in trouble. The flattening is because it’s being pushed against my sternum, which I need…. And the only thing that can be done is to break open my rib cage and rebuild it, giving the vein more space. This section is long, a copy paste from my notes so that I have it here when I lose them :frowning:
    o “The reason that’s problematic is that that impacts flow out of both your arm and your jugular. Patients who seem to have that problem tend to have predominantly left sided jugular symptoms and much larger component and arm symptoms on the left.
     So when we go in we measure pressures and often what we see is we’ll see stagnating contrast much worse than the right because there’s an outflow problem down here
    o Importantly if that’s a major problem styloidectomy won’t do much for you
    o There are people who will collaterize to the other side… we’ll see the blood go to collateral veins and a lot of that cross over to the right and then down the jugular vein on the right side where the flow is not as impaired.
    o There’s not a way to fix that without taking your chest apart and reconstructing your chest to make room. I know of one person, a cardiothoracic surgeon in Johns Hopkins who did that and they reported improvement in symptoms, but this was just a month or so ago and I don’t know how the patient is doing now… He also shared that he had seen (or maybe even done himself) a stent placed to open it up, but the stent got ruined in no time because the pumping thrashes the stent against the sternum which wins…”
  5. Finally, I don’t remember what we do if it’s number 5. I think he expects this not to be an issue. But a drug like diamox at the least… perhaps a shunt?

He suggested that my left sided TOS symptoms could actually have been misdiagnosed and it being the brachiocephalic thing. But as I ponder it, the fact that the left symptoms in my forearm and hand are almost identical to those on the right, I’m banking on this NOT being the case.

So, let me add here, that I am not buying into number 4 being a major issue and therefore am pretty chilled out about it all.

I am super crazy excited to have this procedure done and can’t wait to hear what Dr Fargen shares with us after

Wish us luck :blush:


As for number four: chest, ribcage aren’t static. The position of the first ribs and the opening space is dynamic. There might be limits and real issues, but also there might be just extremely tense muscles holding it and preventing from proper expansion.

E.g. from the 20 seconds mark:

From 30 seconds mark

From 2 minutes mark:

1 Like

Love all these! Thank you for educating us )). Before ‘meeting’ my styloid last March, I had decided I had to do something to get blood to my left neck/shoulder muscles. I had been walking a lot but then it got cold so moved to our treadmill. I started with 2 hours a day (retired) … and some days would do another two hour session. Not particularly fast or high incline, just moving. I was making incredible progress and was absolutely loosening those muscles. Hoping to get back to it soon.


I am blown away not just that you have and have seen so many fantastic resources, but that you remember them and know where to find them to share. Sincerely thank you so much!!! My TOS started in 2012 after my first car crash and then made worse after the second in 2014 (made all worse from thorax up front and back). But I only learned of TOS when it was so severe in 2019 that I could barely lift a light paper notebook without wanting to scream and forget lifting my arms overhead at all. I got my dx in 2020… or 21… and have been lucky to work with a TOS specialized PT. But no, he doesn’t do any work geared at loosening and creating movement in the chest… I will be sharing my results from all of this with him and ask him to consider what adjustments can be made to help. If it is nr 4 behind the sternum and if that blood is being sent back into the condylar at the back of my head and then to the right jugular… then that means the base of scull pain which is the one that makes me want to scream to get flat isn’t going anywhere… and that is not how I intend to live the rest of my life. Nor is a chest reconstruction.
So more of the right kind of exercises - but in manageable amounts as my (our) limits are much shorter than a normal healthy person and we need to spread what energy we have across a day (and make sure to have enough energy to eat - a problem I have…). Truly, @vdm Thank you


Yes!!! walking can be so good!!! I ended up finding that the head pain after a couple of years of walking most days as my “therapy” was just no longer tolerable, and have since started swimming. Absolute JOY for me who needs flat to feel less pain to be able to be in a pool. My TOS is too severe to use my arms and neck gets stuck and spasms if I have to look around so it took a while and a lot of troubleshooting with my PT to land on using fins, a snorkel made for swimmers in pools and a full face mask. Relas the upper body and use the legs only. Then for my cool down I love shifting from side to side every couple of inhales, letting the “up” shoulder roll back.

The only issue that I’m trying to work through is that because it’s face down in water, it promotes the shoulders curving down, Not good.

But for me, it is sheer bliss to swim with my fins, I try and go 3 times a week and have worked up to having on of those sessions be 5km. I love to challenge myself :slight_smile: I do easily overdo things though when constantly try and do a little better, a little more than the last time and so have to be strict the other times to not do more than 4km at the absolute max, but ideally 3-3.5.

Movement is everything… in whatever way possible…;


Can I ask what a VEW case is?

So complicated for you…but very pleased that you’re getting proper testing done to avoid an unnecessary surgery! I hope that this goes well and you get some answers :hugs: :pray:

Typo. VES - vascular eagles syndrome (jugular trapped between styloid and C1 and whatever other lovely issues come with a particular case


Too interesting. Definitely after seeing the radiologists’ interpretation of my scans, and even without having the dr Hepworth’s interpretation, I think it is good to have more than two points of view. They are very aggressive surgeries and seeing that it has not worked for many colleagues, it is necessary to have several of them analyzing the different options.

Who is dr. Fargen? Where is he? Does he works with dr Hepworth?


Thank you. You are right that the different opinions really matter. It’s so easy to jump on an answer and go with it. Especially when there is compelling imaging to support that that one thing will help. But the question is how many other things are at play and will that one thing being resolved or made somewhat better have enough of an impact to make the risk and recovery time worth it.

Doctor fargen is a cerebral vascular neurosurgeon in North Carolina. He and doctor Hepworth collaborate and share patients. As in Dr. fargen will recommend Dr. Hepworth to perform styloidectomy and jugular decompression for patients that were closer there, while doctor Hepworth will send patients to doctor Fargen to have his invasive radiological fun stuff done. Hepworth immediately recommended surgery for me but I wanted more evidence and so asked to be sent to Fargen (and he did indeed do a referral)

Doctor fargen has also recently started performing styloidectomies and jugular decompressions, however as a cerebrovascular neurosurgeon he works with other types of cases so I think that he’s probably only doing those for patients that are very close to him.

Doctor fargen is mind blowingly amazing and what I really really appreciated about him is that he is incredibly considered and almost conservative both in his recommendations and in his straight talk about likelihood of permanent success… Doctor Hepworth is a genius as well, and as a skull base ENT surgeon (among other surgical ENT things) is incredibly versed at performing these surgeries, but when I question him about outcomes he seems to be a little overly positive as compared to what I feel like I read on this and the Facebook groups posts.

On patients like us, Fargen does a catheter angio/venogram (wiring the catheter up via the groin into the skull, taking measures of pressure in the superior and transerse sinuses and jugulars, looking at the jugs in neutral and also right and left head turn and flexion (all while lying down though) and pushing fluid hard into the jugulars in neutral to see what of your symptoms it provokes


I am in same boat with Hepworth. I have surgery scheduled but want more answers. There’s many that I speak to that don’t get the results they want. I am complicated too. He put in a referral to Fargen but I opted to go to Patsalides instead. Much easier for me and also less complicated. I am in process now of scheduling my venogram.


The jugular element is still considered experimental as well, and with veins recollapsing, stents causing other new nasty problems, etc… Yes, best to get all of the information and then decide if we want to roll the dice.