Severe Bilateral IJV Compression - Symptoms, (Annotated) Imaging, and Some Questions

[TheEccentric]

Introduction

Hello, everyone!

First of all, I just want to say that each and every one of you is a fighter. While writing this, I remembered Keanu Reeves’ quote about love: “If you’re a lover, you’ve got to be a fighter. Because if you don’t fight for your love, what kind of love do you have?” I guess in our case, we are fighting because we love life.

I have huge respect for all of you. This forum has been a source of comfort and information, and I just want to say a big thank you to everyone who is participating here.

After years of dealing with chronic head pressure, chronic fatigue, and plenty of neurological symptoms that gradually worsened until I became bedbound a huge chunk of the time, being gaslighted by doctors and close ones into thinking it was nothing, being misdiagnosed with chronic migraines (I was even told by a doctor that I had psychosomatic pain, and she suggested therapy … it would be very funny if it weren’t so sad how they throw around diagnoses like this without properly investigating the issues), and trying plenty of treatments with no avail, I finally have a (self-)diagnosis (confirmed by multiple doctors) that makes sense.

My Symptoms:

• constant head pressure that ranges from mild to very severe
• chronic fatigue
• neurological symptoms such as: dizziness, impaired motor skills, general body weakness, brain fog
• constant dizziness
• other symptoms such as: a hot face most of the time, poor temperature regulation, earaches and a feeling of fullness in the right ear most of the time, tinnitus, neck cracking at the base of the skull, visual snow (the last one has been present all my life, but it gets a lot worse during flare-ups), some TMJ issues
• flare-ups where the headaches (and some of the other symptoms) become unbearable; I can barely get out of bed, and I have wanted to go to A&E multiple times in the past
  these flare-ups can happen multiple times per day

The symptoms are severely increased by lying down, bending down, exercising, and getting in cars, planes, trains, and elevators. (I was bedbound in January when I was sleeping horizontally, and starting to sleep on an incline made my life a little more bearable)

The symptoms started to affect my life in 2021 (but, after analyzing them more closely, I’m sure they actually started a few years earlier). In 2023, I was misdiagnosed with chronic migraines (that’s when the symptoms became unbearable and truly changed my life—I’ll use “changed” instead of “ruined” to sound more optimistic).

My imaging

CTA Axial

CTA Sagittal

• Left

• Right

CTA Coronal

CTA 3D Reconstruction

Here’s a Google Drive link (CTA Videos) with a few videos for anyone interested in taking a closer look.

A Few Questions:

• I know that I need bilateral styloidectomies and most likely a C1 shave, but I have some concerns about the C1 shave. I’m worried about the potential instability there (since I have crepitus at the base of the skull, kyphosis, and some mild neck pain from time to time). I also plan to exercise a lot once I regain some of my energy, so I’m wondering if, in case my atlas is truly shifted forward, that could improve and give me a few extra millimeters back for the IJVs. The question is how many millimeters, because if it’s not enough, a C1 shave might be my only option. What do you think about this? Are there any investigations you would recommend?

• Has anyone had surgery and still experienced some compression (due to C1), but found that the styloidectomy alone was enough to fix the issue?

• For those who have had vascular symptoms, do you have any advice on how to alleviate them a bit until surgery? I’ve tried most types of migraine medication (due to my misdiagnosis), and they didn’t help at all. Aspirin helped a little after several consecutive days. The only thing that truly helped was sleeping on an incline.

Edits: Added more images.

[Isaiah_40_31]

@TheEccentric - Welcome to our forum. I’m glad you’ve found helpful information here. That’s our goal to inform & educate our members & their caregivers about ES.

You did a really nice job with the 3D conversion of your imaging. Your symptoms sound horrible. I’m sorry you’ve been dealing with them for so long & were gaslit & dismissed! I’m glad you now have a diagnosis so you can move forward.

There’s definitely significant IJV compression bilaterally. Your left IJV looks to be dominant based on it’s larger size but the right one looks much more flattened. I also see what you mean about your cervical spine as you’ve lost the lordotic curve. You can start working on restoring the curve with gentle physical therapy exercises & much patience once you’ve had your surgery(ies) & are somewhat healed.

You asked about things to help reduce symptoms besides head elevation & aspirin. The reason aspirin helped you is because it’s a mild blood thinner. A number of our vES members have had good head pressure reduction when they began taking a prescription blood thinner such as Brilinta, Plavix or Xarelto so that could be helpful for you since aspirin helped a bit. Creatine has been mentioned (5-10 mg/day as helping reduce brain fog. Here’s a link to a post @Jules wrote that may be helpful:

ES Information- Treatment: Pain Relief, Medications and Alternative Therapies

ES Information- Treatment Available For ES: Pain Relief Disclaimer: These answers to common questions were put together for new members to gain a head start in finding information about Eagle Syndrome; to give you confidence to discuss issues with your medical team and to encourage you to research issues further for yourselves. It was compiled by a volunteer Moderator, who does not claim to be a medical professional, merely an informed observer and patient! The sources used are personal experie…

Would it be possible for you to put up right & left sagittal plane images. In the images you’ve posted I can’t tell how much of a role the C1 transverse processes are playing in your compression. The rotating pictures are too small for me to see details very well.

Regarding knowing prior to surgery how much C1 might need to be removed, even a doctor can’t tell you that for sure. We’ve had members who’ve had good results with just styloidectomies, but that’s when the styloids are the dominant force causing the compression. More often it seems that C1 needs to be shaved to some extent as well. Doctors who do vES surgeries have varying opinions regarding how much shaving is necessary i.e. some do the least amount they think will give the iJV enough space to open, whereas others are more aggressive so they do more extensive shaving of the TP of C1. That should be among the questions you ask when you’re consider whom to have do your surgery(ies). Checking for other sources of compression is also something a doctor should do whom you’re considering for surgery. There can be soft tissues also causing compression such as muscle, nerve, other blood vessels, scar or connective tissue, lymph nodes, etc. These aren’t always visible in imaging but the compression they’re causing can show as a secondary area of compression below the styloid/C1.

We have one doctor on our Doctors List for your country, but I don’t know if he’s operated on cases as complex as yours. It would be worthwhile having a consult with him though.

[lsheep]

Welcome Eccentric!! I am so sorry you have been going through so much…. I also had a doctor tell me my problem was likely just my anxiety. It is a terrible feeling (but also a completely untrue statement!). BUT there are so many wonderful folks and resources here to learn from.

[TheEccentric]

Hello, @Isaiah_40_31!

Thanks a lot for the kind, long, and detailed response. Actually, one of the main reasons I decided to try aspirin over a longer period (because I only noticed some benefits after a few weeks of taking it) is that I read on this forum and a few other sources about the potential benefits of blood thinners. Some people experience rebound headaches (medication overuse headaches), so that’s something to consider when taking any kind of pain medication long-term on an almost daily basis. It’s probably also worth mentioning that there is a risk of bleeding when taking blood thinners, and they should be stopped several days before surgery.

I’ll try to get a prescription for another blood thinner next time I speak with a doctor. I’m also planning to try taking some creatine soon.

I edited my initial post to add more images, and I also included a Google Drive link with some relevant videos for anyone interested in taking a closer look.

In the image you annotated, that is actually the hyoid bone. (I used the anterior 3D rotation option in RadiAnt DICOM Viewer for that screenshot, so I understand why it’s not very clear.)

Thanks again for your help!

[TheEccentric]

Hello, @lsheep! Thanks for the reply!

I’m sorry you went through that kind of gaslighting as well. I think many doctors are simply uninformed (and/or misinformed), and they don’t understand that anyone suffering from chronic issues will eventually become anxious and/or depressed (at least episodically). On top of fighting their diseases, people have to deal with medical systems that simply don’t work, (and that seems to be the case all over the world, maybe with a few exceptions) and sometimes with close ones who undermine their struggles.

On the bright side, there are still plenty of good people in this world, from doctors who truly want to help their patients to people on forums like this who spend their free time helping others.

[Jules]

Nice work with all your imaging! Certainly looking at your sagittal views it looks like the C1 process is contributing a fair bit to the compression, I’m not experienced nor confident enough with looking at the axial views to see whether that’s the case though, as sometimes the two views can give very different perspectives… @TML was very active on here before his surgery & gave members excellent advice looking at their scans, he did also post a tutorial if you’ve not seen it, you’ve obviously done research yourself so not sure if you’d learn anything yourself:
Axial CT tutorial - General - Living with Eagle
But you might be able to see the C1 processes clearer on other images to judge the compression?
I think really all you can do as we suggest to all members is to get at least 2 opinions , and to go with your gut on who you trust most, there have been quite a few members who’ve been given different opinions by the most well know VES doctors in the US unfortunately , C1 shaves are relatively new, so the full benefits and adverse effects aren’t well known yet. Dr Aghayev who you’ve spoken to is pretty thorough with his technique & trimming the C1 process, other doctors are more conservative but then that might not be enough, I wishe we could give you more definite answers!

[TheEccentric]

Thank you for the video! I watched it.

I think really all you can do as we suggest to all members is to get at least 2 opinions , and to go with your gut on who you trust most

Thanks for the advice. I will get more opinions and make a decision very soon.

there have been quite a few members who’ve been given different opinions by the most well know VES doctors in the US unfortunately

On the one hand, it is unfortunate and confusing to receive different opinions. On the other hand, maybe this is a problem with multiple solutions.

I wishe we could give you more definite answers!

As with most things in life, many medical issues don’t have definite answers, but it’s always useful to discuss the possible options.

[Isaiah_40_31]

@TheEccentric

@TheEccentric

In the image you annotated, that is actually the hyoid bone.

I feel so silly! After you pointed that out, I could see it was your hyoid bone. I guess I’ve never seen one quite that straight on from the front so it threw me off. I deleted my annotated picture so it wouldn’t confuse someone else.

@TheEccentric

Actually, one of the main reasons I decided to try aspirin over a longer period (because I only noticed some benefits after a few weeks of taking it) is that I read on this forum and a few other sources about the potential benefits of blood thinners. Some people experience rebound headaches (medication overuse headaches), so that’s something to consider when taking any kind of pain medication long-term on an almost daily basis. It’s probably also worth mentioning that there is a risk of bleeding when taking blood thinners, and they should be stopped several days before surgery.

We haven’t heard of our forum members getting rebound headaches from taking a prescription blood thinner for IH, but that doesn’t mean it hasn’t happened. When you’re prepping for surgery, the doctor’s office generally provides a list of medications that need to be stopped anywhere from a few days to a couple of weeks before surgery & you’re right, blood thinners are among those. I think I had to even stop my daily aspirin 2 weeks prior to surgery.

I looked at your updated images & took some screenshots from videos in the Google Drive link. I see more than one area of compression on both sides. It looks like your ICA is causing compression lower down on the right IJV & maybe the common carotid, too. Your left IJV also is pretty flattened further from the skull base which might be from your SCM or some other soft tissue.

[tesla001]

Hi @TheEccentric !

Have you had an ultrasound of your vertebral arteries (VA)?
I have marked on the 3D image, with blue arrows, where you can see how much narrower the right VA is than the left.
If the ultrasound diagnosis Transcranial Doppler (TCD), shows that the values ​​are reduced, especially in the Basilar Artery, this can cause symptoms, so in all of this, there may be a combination of your symptoms from multiple causes.
If it is proven that you have reduced values ​​in these arteries, it is called vertebrobasilar insufficiency (VBI). There are medications for this condition and they can improve some symptoms, such as dizziness, tinnitus and others.

If you decide to have surgery, ask the surgeon about this, whether there are risks of reduced flow through the left VA due to scar tissue, etc., because this artery has taken over the main function of supplying the back of the brain, since the right VA is of no use.

[Isaiah_40_31]

@tesla001 - Great observation! Thank you so much for jumping in & commenting. I always appreciate input from our members.

I wonder if the smaller right VA is suffering from compression, too? I wish I knew more about the neck vasculature. Because my focus is predominantly on the IJVs, ICAs, ECAs & common carotid plus styloids & hyoid, I know I miss other critical things such as what you pointed out.

[TheEccentric]

We haven’t heard of our forum members getting rebound headaches from taking a prescription blood thinner for IH, but that doesn’t mean it hasn’t happened.

I actually mentioned that just in case anyone stumbles across this post, as it’s an important fact for people suffering from chronic headaches: people can have multiple types of headaches at the same time. This is actually the case for many people dealing with chronic migraines who try to manage them long term with acute pain relief medication.

When you’re prepping for surgery, the doctor’s office generally provides a list of medications that need to be stopped anywhere from a few days to a couple of weeks before surgery & you’re right, blood thinners are among those. I think I had to even stop my daily aspirin 2 weeks prior to surgery.

Thanks! That’s actually useful to know, and I was planning to stop any kind of medication two weeks before my surgery.

I looked at your updated images & took some screenshots from videos in the Google Drive link. I see more than one area of compression on both sides. It looks like your ICA is causing compression lower down on the right IJV & maybe the common carotid, too. Your left IJV also is pretty flattened further from the skull base which might be from your SCM or some other soft tissue.

Thank you very much! I actually noticed that compression (it’s also very visible on the axial view). I attached an image and a GIF to this comment. I just hope it’s not something contributing to my symptoms. I had a Doppler exam of my neck, but the operator denied the existence of IJV compression at the C1 level, so I strongly doubt her knowledge about such compressions. They also didn’t mention anything about compression of my IJVs lower down the neck.

Related to the second to last picture, the styloid is indeed extremely close to the transverse process of C1.

Another Compression

Measurements

[TheEccentric]

Thanks a lot for you response!

Have you had an ultrasound of your vertebral arteries (VA)?

I had two Doppler ultrasounds, and the latter one reported the following regarding my vertebral arteries. (I should also mention that both operators denied that my IJV compression at the C1 level could be the source of my problems, so I don’t trust anything they said about compressions. One of them even tried to gaslight me by saying I had no compression after I showed them the CTA.)

Maybe another relevant detail is that I had a very bad flare-up before the latter ultrasound, so some measurements might have been affected by that.

• Left VA: speeds 70/20 cm/sec, diameter 3.8 mm
• Right VA: speeds 63/19 cm/sec, diameter 1.8–2 mm (at the limit of hypoplasticity)

In hindsight, I should have included more details about the investigations I’ve had in my post, but I didn’t want it to be too long. My MRV showed a hypoplastic right vertebral artery, bilateral posterior communicating arteries, and right transverse and sigmoid venous sinuses, though these were considered anatomical variants.

If it is proven that you have reduced values ​​in these arteries, it is called vertebrobasilar insufficiency (VBI). There are medications for this condition and they can improve some symptoms, such as dizziness, tinnitus and others.

I’ve read about VBI and Bow Hunter Syndrome (BHS). Considering that I had no symptoms for 16 years, had very good coordination, no dizziness, and my Doppler investigations showed that my VAs are fine, it doesn’t seem very likely that I have either of these conditions.

If you decide to have surgery, ask the surgeon about this, whether there are risks of reduced flow through the left VA due to scar tissue, etc., because this artery has taken over the main function of supplying the back of the brain, since the right VA is of no use.

That’s a very good idea. I’ll ask my surgeon about it.

[Isaiah_40_31]

Thank you for the additional images. I have trouble w/ the GIFs because the image changes fast enough that I can’t get my brain to acknowledge what it’s seeing before the picture changes. This may be a problem of age as I’ve seen my adult children able to process both rapid visuals & sped up sound whereas I can’t keep up.

[TheEccentric]

I understand. I’m sorry to hear that. I included the GIF because it’s useful to see how (and where) it gets compressed and decompressed. It’s part of one of the videos in the Google Drive folder, which should be easier to follow frame by frame.

[Isaiah_40_31]

Got it. I did watch the videos & like that I can pause them to get a better look at things that seem significant.

[tesla001]

@Isaiah_40_31

I wonder if the smaller right VA is suffering from compression, too? I wish I knew more about the neck vasculature.

Usually there is no compression of the VA, but rather it is so narrow from the very beginning where it branches from the subclavian artery. Many people have this narrowing and it is predominantly on the right. The vasculature of the brain is such that if a problem occurs in a artery, it is partially compensated by other arteries, because the anterior and posterior supply are interconnected via the circle of Willis.

[Isaiah_40_31]

Thank you for the explanation, @tesla001. Much appreciated & makes sense. Our bodies are created to thrive & survive, as I often say here. We certainly have lots of “back up systems” to cover when there is failure in some area or other!