New Here - Hello!

Hello!

I am glad to have found this site and community! I hope everyone is doing mostly well today.

Earlier this year, I finally discovered I have internal jugular vein compression. I am relieved in some aspects because I’ve been searching for answers trying to figure out what is wrong and up until this point, had been feeling dismissed and even began to wonder if everyone felt this way because all my prior testing had come out fine and I just wasn’t managing it very well.

Anyways, I went to an ENT’s office and they ordered a CTA. The CTA showed chronic occulusion of the left internal jugular vein and when I went to the follow-up to discuss the results of the report, I was told the right vein is also significantly compressed. I previously had decompression surgery for Chiari Malformation as a teenager, but the scans showed that the cerebral tonsils were still below the foramen magnum also (I’m in my 30s now).

I went to to have a jugular ultrasound and spinal MRI and mostly everything looks okay. The right vein’s velocity is much higher than the left, and the left one disapears at certain points/could not be seen. However, they didn’t find a thrombosis, so I feel that is good news!

It was suggested that another potential cause for the internal jugular vein compression could be stylohyoid calficiation. I haven’t had a chance to meet with the ENT (Dr. Hepworth) or have a follow-up with his NP since the jugular ultrasound.

I have uploaded some scans from my recent CTA and I’m wondering if you all can give me your non-medical opinions?

Thank you! Again, I’m so glad to have found this community (although I’m sorry others are also and have been struggling).





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Welcome, @Kit_Cat!

I’m really glad you’ve been accurately diagnosed & have an appointment with Dr. Hepworth. That’s a giant step in the right direction.

I’ve annotated a couple of your images though you’re probably familiar w/ where things are at this point. You definitely have bilateral IJV compression & it looks like the transverse processes of your C1 vertebra are mostly to blame tthough it’s hard to tell what the role of your styloids is based on the angle of the images. Your styloids are not super long but both have interesting shapes especially toward their tips which can contribute to the nerve symptoms you have.

Here’s what you can expect from your visit w/ Dr. Hepworth: He’ll likely prescribe a blood thinner (most likely Brillinta) for you to take for 3 months to see if it helps reduce your IH symptoms, & you’ll be scheduled for a follow-up consult. Your surgery date will be set after that consult although, you may be able to push to get on his surgery calendar at the time of your initial consult. I highly recommend never leaving his office w/o having your next appointment scheduled as that will save the hassle of multiple phone calls as you try to get follow-up appts scheduled later.

With bilateral ES, most surgeons will tell you that having one IJV open is all you need, but we’ve learned here that our members w/ bilateral IJV compression do best when both IJVs are decompressed, thus you can anticipate 2 surgeries.

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Thank you so much for the reply and annotations! I have gotten semi-familar where things are, but it’s mostly based on my own research, so I appreciate you doing that!

All of this good information to have. I’m also glad you noticed what you labeled “Possible other vascular tissue.” I noticed that but wasn’t sure what it was, so I’ll have to ask!

Also, thanks for the heads-up regarding the appointment. They mentioned blood thinners at my last appointment. So, it sounds like even if we don’t have a clot causing the blockage, blood thinners can be helpful just so the veins don’t have to work as hard (kind of)? Do most find blood thinners helpful? I imagine it’s somewhat of a case by case situation.

Thanks again!

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IJV compression can be caused by only the styloid &/or C1, but there are soft tissues such as nerves, other blood vessels, swollen glands, muscle (most often the SCM), nerves (most often spinal accessory), & fascia that can also contribute but aren’t visible on a CTA/V. Those are most often discovered during surgery. I labeled the “possible vascular tissue” as vascular because it’s visible in your image which I assume is a CT w/ contrast,

Yes, a blood thinner is recommended even w/o a clot as it thins the blood which causes less resistance as it flows through the constricted part of the vein. That can help reduce the IH & thus some of the symptoms the IJV compression is causing.
It is a case by case situation re: who is helped by the blood thinner, but we have good evidence it is very helpful for some people.

as the vascular tissues do show up well in that type of image.

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Thank you for the information.

I’m hoping I’ll have a follow-up soon and can figure out what my next steps will be. This is an odd time - between finally finding some answers but still having a lot of unknowns about what’s next.

I appreciate you taking the time to explain all of this. Thanks again!

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Hi & welcome! @Isaiah_40_31 has explained everything so well & I can’t add anything, but just wanted to say hi & that I’m glad you’re ale to see Dr Hepworth, he’s done lots of successful surgeries!

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Hi @Jules, thank you for the welcome! Yes, all the information has been so helpful! I feel fortunate to be able to meet with Dr. Hepworth and will hopefully have some positive updates!

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Hi @Jules and @Isaiah_40_31! I was just wondering - I imagine it’s unique for everyone, but what would y’all say is the average recovery time after surgery? Thank you!

Hi @Kit_Cat - If you’re wondering so you can gauge when to go back to work, we highly recommend taking at least two weeks off post op. If you can ease back in by going part time or working from home for awhile, 4 weeks is even better.

Most people start feeling some better by the end of the second week post op & significantly better 6-8 weeks post op. Nerves can take many months to gradually recover so some symptoms can hang on for quite a while, even up to a year or more. Symptoms will likely come & go during your recovery months but most should gradually go for good.

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Great - thank you! That is good to know!

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It does vary depending on what work you do too- some members have found that talking for long is uncomfortable after surgery (especially if it was difficult before), and obviously with any manual work the muscles need time to heal, so nearer 4 weeks is best for that…

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Hi there @Kit_Cat
For me the blood thinner was a game changer
It made a huge difference in cognition and a reduction of brain fog
Changed head ache severity as well
Although is was not a complete fix by any means, I was very surprised that it helped so much
I was prescribed plavix and have not tryed others
Docs said that if it’s helping me to continue
I have also had left styloidectomy surgery with doctor Hepworth and believe your in good hands there :heart:

Glad to hear your on the way and I wish you some good healing energy :hugs:

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Hi @Kit_Cat ! I’m so glad you found this forum as well. I was pretty much where you are about a year ago & was SO thankful for the people on this forum. It made the whole process of figuring out what to do and which doctor to see so much easier. Of course, it is a stressful time & I know what it’s like to feel relief that you finally have some answers but also anxiety of deciding what to do. Just commenting on the blood thinners- I was put on a baby aspirin and am still on it post surgery. I had left styloidectomy and C1 shave (IJV decompression too) last June. I also have compression on my right side but have not scheduled any surgery yet since the doctor wants to take a wait and see approach. He said that it could be up to a year to see all of the effects from the surgery. I have not noticed much of a difference in symptoms while taking the aspirin, but maybe that is because it is not as strong or works differently than the Brillinta or plavix. Also, as @Isaiah_40_31 stated there is often tissue or nerves also involved in the compression that don’t show up on the imaging. My spinal accessory nerve and IJV were twisted together & that was discovered during the surgery. I’m glad that you have an appointment with Dr. Hepworth. As I’m sure you’ve read, he has a lot of experience and seems to be an excellent surgeon. Welcome to the community and please keep us posted as to how things are going with you.

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Hi @Jules, that makes sense! I currently work in the mental health field and do quite a bit of interacting with people. I’m fortunate in that my job is not labor-intensive, although brain fog and speech has been difficult (along with the headaches and other physical symptoms). I would rather give myself time to heal, but it’s difficult when life goes on! For those who need surgery for bilateral compression, what is the process like in terms of time? Would a person get surgery on one vein and then recover for a certain amount of time and then have surgery for the other vein later on? And if so, how much later on (weeks or months?) Thanks, and I apologize for all the questions!

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Hi @mekanX , thanks for the welcome and healing energy! I appreciate it. I’m glad the blood thinner was a game changer - that gives me hope! I just started Brilinta. Brain fog has also been a fairly big struggle for me, so that would be great! I’m also glad to hear you had a good experience with Dr. Hepworth. Did you start the blood thinner prior to your left styloidectomy or before, or both? Thanks again!

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Hi @vap, thank you for the kind welcome! It’s nice to hear from someone who is about a year out from where I am now. I’m sorry you have not experienced very much improvement on the baby aspirin though. Wow, that’s amazing and sounds somewhat scary that your spinal accessory nerve and INJV were twisted together! It seems like such a complex area of our bodies. How are you feeling about having to wait a year or taking the wait and see approach? Did you have to make any major adjustments to your life after the first surgery and during recovery if you don’t mind me asking? Thanks again and I appreciate all the support from the community!

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@Kit_Cat
Dr Hui had auggested the plavix after a couple of months , we first had tried diamox , and initially it reduced the head aches but it could not be used long term for me, I went from high pressure to low (a suspected csf leak)and suffered worse head aches and vision problems , pins and needle in my hand and feet sensations , and then a poorly timed lumbar puncture that leaked and created the absolute worst head ache ever, brain sag and I could not bare to sit up or walk with out the worst head ache pain, very strange feeling
I could only lie down and ice my head all day
Terrible experience for weeks to about a month,and a couple trys at the hospital to seal the leak from the puncture .
Stayed off the diamox, head aches and vision got better, then worse again, we tryed diamox again… only to have a kidney stone episode,

He suggested the plavix and i was very skeptical after the diamox, but desperately need ing relief,
After the first week I felt awake again and could understand things so much better , I took some cognitive testing and did very well, surprisingly

I think there is a build up phase as far as congestion goes, and our body does it’s best to compensate up to a threshold or tipping point of dis function, so the initial plavix use (I believe) is like flushing it all out as best as possible, but as far as fiix not so much,

As a helper yes,
it also helped with the eye pressure and pain that was ramping up as I was showing signs of eye nerve squishing or thinning,” papiledema “and afraid of losing my sight I was happy for the relief
I wish I could say it stopped the head aches and vision and ear stuff over all ,but it helped make them more tolerant during the long term

I think that we as far as congestion and anatomical variation goes, have a fluctuating pressures that by bending down or tilting head forward to read my phone or twisting somehow puts crazy strain in these delicate veins/nerves
And that in turn adds to the backed up flow
So constant ups and downs pressures all day long

Doctor Hui was pleased it helped and could clearly explain the basics of how, although he said this was a positive , it was not a fix, and it gave me more of a understanding to good flow bad flow states.
It was about this point that I really started to except that the surgery was the next option and could provide a long term solution :smiley:
He gave me a couple of names and I began my searching …. Then I found this site, what a blessing to finally have a community that I could relate to ,what a blessing to us all

I had styloidectomy September 2023 from dr Hepworth, stopped taking the plavix a week before
And was pleased that all went well,
now over a year out and I have started to take the plavix again as the vein has not open up good enough and the symptoms has started to increase again , about six months post op
I use it now daily and it helps , try’s to stop taking it after three months but head aches and vision etc. symptoms ramp up pretty bad so back on it again for maintenance.
Dr Hui suggest revision of the left side as well as c1 shave, and then maybe a stent, however dr Hepworth does not agree
I was on waiting list for surgery for October 2024, and then March 2025 , but did not go threw so n just in limbo lol
Kinda lost as what to due next but after seeing the last webinar I really like the way Dr constantino presents his info as well as his system of the operation, maybe a consult in the near future there.
Pretty exhausted with it all but still hopeful there is a soulution .

Waiting on the next intervention :smiley:

I hope you may find some relief as well
Hugs and :heart:

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Usually surgery is scheduled several months after the initial consult though with Dr Hepworth that can be 4-5 mos. It’s worth it to get on the cancellation list as that can move the surgery date sooner.
In most cases, the second surgery is done 3 or more months after the first one so healing on side #1 can get a good start. It can take a number of months for gorge vascular system to reset post op so patience will be required.

I recommend that you try to set your second surgery date on the day of your post op appt after the first surgery.

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I hope that you’re able to get your other side fixed, frustrating that you weren’t able to have it done with Dr Hepworth…You’ve been so strong to keep fighting your corner, maybe a consult with Dr Costantino will give you answers :folded_hands:

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Most doctors like to leave it at least 3 months between surgeries to heal…I’m UK so with waiting times I had to wait a year between mine, but I was very lucky & the first surgery improved the vascular symptoms really well so I was okay to wait!

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