Surgery with Hepworth coming up in early May

It’s been way too long since I updated here. I continuously struggle with balancing increasing pain and muscle spasms that go all the way up to my neck (no good!) from thoracic outlet syndrome from typing and scrolling with researching and keeping up with this and the Facebook group. It’s a no win situation :blush:

My surgery is in just under one month with Dr Hepworth. I did the catheter angio venograms with Dr Fargen toward the end of last year. He found more compression points than expected, but interestingly a lot of the compressions, even those that he labeled “severe” did not necessarily significantly impact flow. As far as compression types of Eagles, these doctors are now starting to say that the gradients is less important than they first thought it was. I think the theory for someone like me is that my collateral veins are so large that they take on, at least when flat in the test, what the jugs can’t handle. But that the collaterals themselves are a cause of issues (sure hope they are to me!). He also did find complete occlusions of both jugulars when in flexion (looking down) which explains SO much of the pain I get in the back of my neck and base of scull when looking down (again, I hope – otherwise it’s instability), so I am very hopeful.

What blew me away most however was that I was discovered to also have intracranial hypertension. When I last had an LP done, which was maybe six months into the explosion that made me have to stop working and led me to where I am today, the result was 9cm of water. Well now it was just under 30. And while no single area of compression had a really large gradient, because there were so many areas, especially on the left side starting close to the heart in the brachial cephalic vein, the total resulted in a fairly steep increase from the heart to the top of the head.

Speaking of my friend, the ol’ left brachiocephalic, I am very very lucky. I have what Fargen labels as “severe” (his highest “rating”) compression there, but my beautiful system created a collateral vein above it that shoots off to the right brachiocephalic vein and is fat enough to result in just a small gradient. How cool it that?!

Dr Fargen talked with me about the possibility of a shunt versus styloidectomy and jugular decompression. He was straightforward and said that in his experience more often than not styloidectomies and jugular decompressions result in the vein collapsing again on itself. I think the theory is that the vein has been crushed for so long it’s just too weak on the sides. And so it can open up nicely in surgery, but then it just closes in on itself with the lightest pressure from the elements around it once closed (which can happen fairly soon or many months, even a year, later). He said in these cases patients go on to need stents. He also shared that while a shunt may end up proving to be the way that we go in the end for me (draining excessive csf fluid to get it down), pretty much all shunts end up failing. And they all almost always have problems before that. Shunts suck he said. He agreed with Dr Hepworth that the best place to start is with the left styloidectomy.

So I’m a go :blush:

Got to admit I am a balance between being optimistic and looking forward to it on one hand and then in the blink of an eye terrified and wanting to cancel it. The emotional turmoil is quite a bit. Too much.

I’ve also read enough posts from people here and on the Facebook group that have been through surgeries to know that there really is an array when it comes to recovery time and to post surgical pain and length and so it seems the right thing to prepare for a rougher scenario in terms of having everything ready in the house to make it easy for my husband to take care of me if I end up pretty much useless for awhile. And that brings on its own amount of stress. Especially when every individual task that I do seems to take 10 times longer than it should and fatigues me as much as it does, and has me do things with my hands and arms that again trigger more TOS+ symptoms.

Hopefully, I’ll come out of surgery and in a fairly reasonable amount of time realize that I have over prepared😊 that would be a great outcome!

No questions for me at this point, I just wanted to pop back in here and give an update and no doubt I will be popping back in with some actual questions either near surgery or afterwards.

Thank you again for being such an amazing group. Thank you so very very much to the incredible moderators here that make all of us feel like friends, and several of the patients who put a lot into helping those of us newer on the path.



Thank you for this wonderful update. I’m so glad your surgery is coming up soon. Have you mentioned your surgery date previously? If not, do you mind telling us when it is. I’d like to put it on my calendar so I can pray for you especially that day.

Dr. Fargen’s findings and discussion have certainly given you much food for thought. I’m glad you were able to see him & receive a thorough assessment of your vascular compressions. I agree that our bodies are marvelous in their abilities to compensate when things go wrong. Collateral veins are just one of the ways they keep us upright & surviving, but I also have heard the collaterals can cause problems on their own. The styloids are another expample i.e. the brain perceives greater stability is needed in the neck so elongation occurs either of the styloids themselves or due to calcification of the stylohyoid ligaments. However, as we know, elongated styloids, even if they’re providing some necessary support or stability, can also cause tremendous pain & other symptoms.

Having a styloidectomy & decompression surgery will hopefully make a BIG difference in how you feel. I, for one, look forward to hearing your victory cry as your symptoms disappear post op! :hugs:


I hear you! It’s so wonderful to finally get an answer and see some “thing” that can be a major contributor to our issues… and get it removed. And then the realization that, damn, this is a major surgical procedure that may or may not help me, and could cause its own host of issues. Got to trust our gut… and our doctors. I do. I intuitively knew when my issues started that it was related to my neck. Just took time to finally be heard by someone who knew what to look for and properly diagnose me. I do feel led to this, and I have faith that this is the right thing to do.

And I can’t echo your appreciation of this group enough. I would honestly feel lost without this forum. A true Godsend. :sparkling_heart:


I’m glad that you were able to get a fairly comprehensive picture (by the sound of it) with Dr Fargen, and thank you for coming back to update us. It’s interesting his belief that the veins often collapse back after surgery, we’ve certainly seen a fair few members who’ve had that. I think that I’ve been so lucky with the surgery making such a difference to my IH symptoms maybe because my styloids hadn’t been compressing the IJVs for too long…
I hope that the surgery helps you, I think when there’s significant vascular symptoms it does make the decision to have surgery a bit easier; you can’t carry on being so symptomatic realistically…I hope that the surgery makes a massive difference for you & that a shunt won’t be needed!
I think you’re wise to prepare for a bumpy recovery, and hopefully than it’ll be easier than you expect! As @Isaiah_40_31 says, let us know when you have a definite date! Sending you a hug and hoping you don’t get too anxious about it all :hugs: :pray:


@akc Great news that things are going in the right direction. I think every compression has somewhat unique features or types. For example, one might have the usual Styloid/C1 compression and in addition might have Digastric muscle & Occipital artery compression as is the case with me and also @Barrootz who luckily had all those compressions taken care in one surgery by Dr. Constantino & his Neurosurgeons ( Decompression surgery with Costantino - #35 by Barrootz). Where I went through 2 surgeries (one for the Styloid 2022 & one for C1 shaving 2023) but I still have Occipital artery/Digastric muscle compression remaining on my dominant left IJV. There was a lady (@BriCSP ) that had Styloid/C1 and also accessory nerve compression on her IJV and it turned out that accessory nerve was doing most of the compression (Surgery with Dr. Costantino and Dr. Tobias on July 24—not quite Eagle's - #13 by BriCSP). She was lucky and it was all taken care of at once and as result her 10+ years migraines were gone.

Reason why I am alluding to these cases is that, many of us do not improve after Styloid/C1 compression removal because we have other compression that doctors might not be aware since some could only be seen dynamically and can only be seen with large incisions such as the one Dr Constantino performs.

So in your case, Not a doctor, but I think you might need both Styloid removal and C1 shaving on your left dominant IJV since both appeared to be compressing your IJV somewhat. You could also improve with only Styloid removed so I am not discouraging you but preparing you so that you do not feel disappointed if you do not improve. Additionally, I saw what appears to be Arachnoid granulations (appears dark holes in the TSs) in both of your transverse sinuses (see my excerpt of Sept 2023 findings) which appear to be moderate in size. Not a doctor again, but at some point, you might need to address your transverse sinuses’ arachnoid granulations to have a fully patent TS + IJVs .

You said Dr. Fargen found multiple compressions, I wonder if he said anything about your transverse sinuses? Do you have his report?

Anyways, my point is, this is a journey and depending on one’s compression type & complexity and luck (@Barrootz & @BriCSP were lucky to have all the compressions removed in one shot), you might get relief in the first operation like many folks here, if you don’t, don’t despair, but know your compression type and address them one by one before thinking of stents or shunts as Dr. Fargen is dead right on what he said about them. Stents are good options if you have transverse sinus compressions according to the peer reviewed studies I read but not so for IJVs. Wish you all the luck.


I rolled out my website to try and help other folks avoid multiple surgeries and get to resolution quicker.
I included this statement:
Caution: I’ve heard from many people stating they required second surgery because the initial surgeon “only removed the styloid”


Absolutely about the collaterals causing problems. That’s what is happening with the ones built to compensate for the lack of flow through the jugulars. I have also heard of people where the surgery is successful and the jugulars are clearly wide open and yet fluid still shoots past to keep using those collaterals (and hence symptoms caused by them don’t subside). As looking down is so panful for me (and generally being upright painful at base of skull growing with time) I am hoping to not end up in that category.
I never knew that that was why the styloids grow. I am sure it’s an easy to find bit of information that I just never came across. Truly fascinating!!!
May 8 is my surgery date. I will take any prayers, chants, vibes or positive thoughts. Heck, I’d love to hear that you do all 4 of those for me.
I feel like this would not be an appropriate reply to you if i did not end with a bunch of emojis for you: :star_struck: :100: :vulcan_salute: :dancer: :horse_racing: :skier: :surfing_woman: :woman_cartwheeling: :penguin: :hibiscus: :rose::footprints: :footprints: :footprints: :green_heart: :blue_heart: :purple_heart:


Such wise and true words! Thank you so much for sharing. It’s funny, all these years I knew it was my neck as well… only I though it was in my C-spine and didn’t understand why scans weren’t more remarkable…
I’ll have to look at your story later Sounds like you haven’t had surgery yet but have it planned if I interpret this correctly, but I’ll jump over later this evening or at the weekend to see :slightly_smiling_face:
@Barrootz Thank you so much. I see you in the FB group and think it’s fantastic how you’re helping those who are earlier on the journey and putting yourself out there! I’m intentionally staying away from C1 right now and with fingers crossed. Hepworth is known for being more successful than most in moving the jugular away from C1. In some it goes back but in others it is happy in its new home. Here’s to hoping I’m one of those.


Thank you for the laugh, @akc! Your date is on my calendar. I promise to pray, send positive thoughts/vibes but am not sure about chanting. Regardless, you will be in my thoughts & so will Dr. Hepworth. May he do his “medical magic” on your IJV so you can start looking down again w/o pain & crazy symptoms! I’m hoping for huge symptoms relief overall as well!

:gift_heart: :two_hearts: :boom: :dizzy: :nail_care: :muscle: :pray: :crossed_fingers: :muscle: :weight_lifting_woman: :bath: :unicorn: :dog2: :poodle: :woman_juggling: :butterfly: :rose: :sunflower: :bouquet: :hugs:


@KoolDude - I’m really glad to read you know what’s continuing to cause your IJV compression, however, I’m very, very sorry that potentially means another surgery down the road. Do you have plans to do that? Would you see Dr. Costantino or is there someone closer to you who would do it?

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Thank you SO much! These thoughtful reality checks and pointing out or reminding of other findings like the arachnoids or possibilities like not yet visualized compressions are so valuable.
First of all, I need to jump over and catch up on your journey. I remembered the C1 shave and the great disappointment in continuing to have terrible symptoms… is there hope for resolution of the Occipital artery/Digastric muscle compression?
I’m amazed you saw my post so quickly. And yes - those granulations were points that Fargen saw. He rated the stenosis from both of them as “severe” however they barely impacted flow. That was one thing that he said about my case overall, that there is stenosis here and there and some moderate but several severe, and yet in none of the cases is the flow largely impacted (from . He couldn’t explain it.
We also talked briefly about the unnatural (to some of us) rotation done on the table for when he looks to see what happens when you rotate L an R. He had expected to see some impact on the carotid as in the imaging there is a little contact that shouldn’t be there, but there wasn’t. Well, on the table with your head in the holder, you perform a perfect “twist” like a corkscrew. In reality, someone like me with a fair bit of dysfunction and poor ROM does not turn their head anything like that. I wish I could see what it looks like when I actually turn my head…
The wonderful thing of having Hepworth is that he is very skilled at cleaning up the length of the jugular and anywhere that he can see impact, but also he works to position the vein away from C1 in patients where there is contact. It sometimes goes back, but sometimes stays put. (my right one is sitting on the outside of C1 TP…?!)
I am currently opposed to having C1 shaved for myself because there is not yet consensus as to if it can impact stability, and I do have some instability and a very weak neck, so this is not a step I am willing to take at the moment. So for now I am knowingly proceeding without a C1 shave understanding that that may mean that I have no symptom resolution (and yet SO hoping not).
Stenting the jugulars is messy for sure. I think right now Fargen may be at the forefront in making this work (he now stents the entire length of it, with a smaller stent at the top and larger below, and never without the styloid cut all the way back to the skull base. He has sent patients back for revisions when they styloid isn’t back enough. This combination seems to have his patients having good outcomes right now and not having the terrible accessory nerve issues. But still he warns it is a real risk and that all of this surgery is still in its infancy and experimental.
That said, I am also a no thank you for stenting the jugs… I almost feel like my path may be Left side styloidectomy and jugular decompression, then the right, and then if still no - or insufficient - resolution, hit the pause button. Of course who knows how I will feel in a few months or a year from now…
Oh and yes, I do have the report, I’d be happy to share a scrubbed version if you’d like to see it, though not quite sure how (snaggit probably and then post as pics…?)


I see how busy you are on this page so don’t reply but… just to poke fun… a rain dance? Maybe throw in a rain dance instead of a chant?


But sincerely, as always… thank you :sparkling_heart:

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Hi @Isaiah_40_31

Thanks for your kind empathy and as always, you and Jules are what makes this particular forum great!

I do not have an immediate plan to do a surgery now (may be in the future) but I am scheduled for Catheter Angiogram + Left IJV Angioplasty ( Ballooning ) on Monday April 15th. Not expecting much but hope to get some temporary relief at best an no adverse effect. Since this is invasive, hope it goes smoothly. Every time, I go through it, I had to sign my life away.


Will pray that this does help, so rotten for you to have not got relief from your surgeries so far :hugs: :pray:


@akc Yes, I am still dealing with the symptoms so as the old adage goes what can’t be cured (hopefully some day it will be cured) must be endured.

I have Catheter Angiogram + left IJV angioplasty (ballooning) on April 15th so my hope is, I will get some temporary relief but expect restenosis at some point. To address the occipital artery and digastric muscle compression effectively, I need to go through another surgery on my left side but not rushing to it now.

I really hope that your symptoms are resolved after the first surgery and I know Dr. H is very capable and the good thing is, he does combine it with post surgery IJV angioplasty.

According to the doctor that did my C1 in UK, he told me that shaving the C1 does not impact the Craniocervical stability when I specifically asked him. He is neurosurgeon that operates on the cervical region and the spine mainly so he knows since he does fusion surgeries as well. I had to take it for his word as the guy seemed knowledgeable but I can understand why you are avoiding the C1 shave. I agree with you, make it last resort.

Interesting that Dr Fargen is pioneering this new technique. Perhaps, it will benefit many of us when we exhaust other interventions.

Don’t worry about the sharing the report. I just wanted to know if he detected them which you confirmed.

Although Dr. Fargen found that the flow is not affected that much, nevertheless your current LP is just below 30 and I assume above 25 cm H2O which indicates a raised intercranial pressure, so the fluid are backing up in the brain although you have a good collaterals draining it, they appear to be not enough. Not a doctor, but I also assume that you might have had occult CSF leak since your previous LP was found to be 9 cm H2O (bit low for IIH sufferer) which is not that surprising given that majority of IIH suffers have some degree of CSF leak to compensate for high ICP pressure according to a number of reputable papers.

Finally, Hope you have a successful operation with resolution of all your symptoms.

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Yes… first appointment with Dr. Hackman on May 21st, with surgery the next day, on the 22nd. It’ll be a whirlwind, but I’m ready to get this done! I know there may be more at play than just the styloid, and I really appreciate @KoolDude’s and @Barrootz’s comments. I am hopeful that I’ll see some difference with the styloids out, and also hoping that Dr. Hackman has some insights as well. Wild things, our bodies are! So comforting to know that we have so many amazing people in this forum to learn from and lean on!


@KoolDude I’m sorry you’re still having issues too. You’re a strong team player in this forum who takes a lot of time to help others. Wishing you the very best. :muscle:


Thank you @DeeCeeNorth and @MandS for the kind words. I equally wish you guys the best for your pursuit of treatments.


Endured… hopefully just for a while. When you are ready you will do the next surgery, and in the meantime know that as we are in the infancy stage of this subset of medicine, techniques are getting better all the time. And an angioplasty for a mini vacation from it sounds like a good plan.
I am not sure what Hepworth is doing now, but I hear that they are just now starting to think differently on the angioplasty for patients who are suspected of having a connective tissue disorder or hEDS (that it may create weakness of - or further weaken - the vein for these patients - unlike the vast majority). I will be curious what he does with me.
You are probably right about the C1 shave. I just know of a few patients who had it and feel less stable/more pain so it leaves me weary. At the same time, there is a world renowned CCI (+) surgeon doing this (Bolognese) and that says a lot.
Your thought about my having sprung a leak when I had an LP of 9 is the reason that my neurologist at the time had the LP done. A general blood patch did nothing and I knew nothing of these other things at the time, but now that I have learned quite a bit, I had the same thought process as you…
Thank you so very much for your well wishes and how you continue to support so many of us on this page despite your own struggles.


Oh my goodness that really is a whirlwind!!! I will be hoping for you that all you need is exactly what Hackman will do. :pray: :crossed_fingers: