Symptoms more severe than the CT scan suggests

[Andal]

Hello everyone I am new to Eagle Syndrome and just recently had a CT w/contrast scan done on my neck which my PCP suspects may be ES. I have calcified ligaments slightly deforming my Jugular veins on both sides and I am wondering if anyone else has symptoms as severe as mine because the seriousness of my symptoms would almost suggest something else is going on. Although I have been tested for everything else under the Sun with dozens of other scans and blood tests all coming up blank while I suffer greatly and doctors scratch their heads, so hopefully this latest test is it!

My Symptoms:

(MAIN SYMPTOMS -TL;DR Mostly Housebound, Severely debilitated/disabled, Severe pain)

-ONSET: Gradual onset starting in the Spring of last year. Symptoms appeared for an hour then went away for a few weeks then appeared for 5 hours then went away for 2 weeks then appeared for 3 days and went away for 1 week then came back and stayed to become my new 24/7 personal medieval torture permanent staycation of hell.

-Constant 24/7 severe head pressure on both sides of my head, constant 24/7 (4/10 pain MINIMUM, 8/10 minimum during attacks) headache in the back of my head.

-Constant 24/7 pulsatile tinnitus

-Constant 24/7 feeling of dizziness/nausea, the on a boat off balance kind, not the vertigo kind. It’s worse than the headache and I have honestly forgotten what it feels like to feel normal on my feet. Because of this, I always feel sick/malaise.

-Applying pressure with by fingers behind the ears strangely alleviates the tinnitus, head pressure, and dizziness by about 60%. Every Doctor I have spoken to about this has been completely baffled.

-Extremely severe “fatigue attacks”. Upon doing any kind of physical activity, All my other symptoms will suddenly and randomly get 10x worse, and I will feel a huge pressure in my head like my brain is being swallowed by a black hole, and my headache will feel like my hear is pounding in the back of my skull. When this happens I will feel as if I have not slept in 3 days. This will happen at random within 30 minutes give or take 15 with any kind of standing-activity and will randomly happen within 4-6 hours of any sitting activity. This is the worst symptom by far. Because of this, I am effectively housebound fully debilitated/disabled and cannot hold a normal job and cannot do what used to be extremely basic activities like grocery shopping. These attacks last roughly 8 hours. Think migraine attack but much much worse. The best way to describe it is it’s like someone spiked your drink and added some rat poison in addition to the usual.

OTHER SYMPTOMS:

-24/7 mid Throat pain. 1 inch Area where my Jaw meets my ears/head is very tender and will give a sharp pain if poked at.

-The headache sometimes feels weird and travels to weird locations. Like sometimes it feels like I am being shocked in the back of my throat in sync with my heartbeat.

-Very strange difficult to describe vascular sensation, like I am being strangled from the inside.

-frequent insomnia - Pain/Dizziness/Nausea often interferes with sleep due to the severity of main symptoms.

-Heart palpitations although they could be unrelated still worth mentioning

-Tinnitus gets louder and dizziness sometimes gets worse when turning head to the side

-Random throat clicks when talking. Sometimes it feels like the joints in my TMJ have popped.

-Mild depression but this is just from being in constant unending pain/dizziness and being unable to participate in my own life due to the “attacks” I get.

I am just wondering if anyone else has/had symptoms so severe that you were completely disabled by them, and if surgery to remove calcified ligaments helped your symptoms? Does anyone else get severe fatigue/feeling like you are dying at random when you are walking around? Did it come on gradually like it did for me or suddenly for you? I am seeing an ENT soon to discuss my options.

One possibility is that I have Right-dominant veins, so my right side Jugular vein is about 2x larger and my left side is 5x smaller than normal and I am wondering if this abnormality is making my problem worse for me than it would a person with normal veins. google “Congenital Agenesis of Left Traverse Sinus Vein” and you will see my problem.

[TML]

@Andal Im so sorry you’re dealing with all of this. I too experience the 24/7 dizziness. I think it’s coming from IJV compression. Been bedridden since last October. The dizziness and balance feeling is worse after motion events like car rides, elevator, treadmill, etc. I recently came across this paper showing that IJV compression from styloid causes the symptoms:

Persistent Oscillating Vertigo From Extracranial Venous Compression - PubMed

Do you happen to have access to your CT? I can look for the compression

[Andal]

Unfortunately my scans aren’t easily linkable and they lack the 3d element which makes them hard to read.

[TML]

@Andal don"t need a link or the 3D. Just need the axial view of C1. If you can upload a screenshot of it I can help. Just look for the top vertebrae that has a white circle in the top middle:

[Andal]

Ok looks like I am approved now. Hopefully you all can make sense of these images.

[TML]

@Andal your styloids are not in contact with your IJVs so that’s good. However, both IJVs are getting compressed by your posterior digastric muscles. There could be more compression further down though at the level of the hyoid or SCMs/anterior scalenes. Now that you know what is what, follow your ICAs and IJVs all the way down to your heart to see if they get compressed anywhere or come in contact with bone anywhere.

[TML]

Can you convert your CT imaging to 3D using the Radiantviewer software?

[Isaiah_40_31]

Welcome, @Andal ! I’m sorry your symptoms are so severe, but you are in good company here as we have & have had quite a few members with extremely severe symptoms. The best things you can do to help reduce your symptoms are to sleep w/ your head & shoulders elevated at night & when resting. Ice your neck to help relieve inflammation - 15 min every couple of hours w/ a thin cloth between your skin & the ice pack. If icing makes symptoms worse, then try heat. Try to avoid the head position that makes your symptoms flare. If you can get an Rx for a blood thinner such as Plavix, Xarelto or Brillinta, taking a blood thinner may help reduce your head pressure symptoms. Some of the vascular ES doctors on our Doctors List prescribe a blood thinner for their patients to take while they await surgery.

The symptoms you have are typical of IJV compression & indeed that seems to be at least part of the cause of your symptoms as @TML has pointed out.

Here’s a link to a discussion that will give you some good information about ES symptoms:

ES Information: Common Symptoms And Possible Explanations For Them

ES Information: Common Symptoms And Possible Explanations For Their Causes: 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…

If you’re seeing a local ENT, it’s likely you won’t get much help for your situation. With vascular ES, it’s critical for you to see a surgeon who does IJV decompression along with a styloidectomy (or removal of calcified s-h ligaments). The doctors you could consider are Dr. Nakaji in Scottsdale, AZ, or Dr. Hepworth in Denver, CO. Dr. Damrose in Palo Alto, CA, also does decompression surgeries but has less experience with them.

[Andal]

First off, thanks a lot for the help. Having an idea how to read the scans gives me some hints. Unfortunately, getting the files to make a 3D Model will be a hassle since they only provide it on CD and won’t email it to me ( The Medical industry and their fine bureaucracy! ). However I did look a bit deeper and found one strange thing, which is that compression of my left IJV seems to happen higher up, with major differences with comparing the size of my IJVs on both sides on lower images.

There also might be more compression in this image I am not sure:

[Andal]

Googling this returns a possibility I have something called venous sinus stenosis via “Nutcracker syndrome”. Wish I had access to better scans.

It seems that the ability to silence my tinnitus by compressing the jugulars in my head with my fingers is a common sign of it. Will be bringing this up with doctors.

[TML]

Good digging! It appears the posterior digastric muscles are culprits in every image. They are always either pushing your IJVs into your styloids and compressing them, or pushing your IJVs against C1 and compressing them. I don’t see any compression in the further down image which is good. So as I do think the styloids are a problem, I’m not sure they would be if the posterior digastrics didn’t exist. I think the posterior digastrics could be removed to give you relief of IJV compression symptoms. Perhaps styloids too but I’m not sure. I don’t think they are elongated because they disappear mid-C1 which is normal. I wonder if your mid throat pain is being caused by your hyoid or thyroid cartilage, or if your stylohyoid ligament is calcified further down. Need a 3D model to see that though

[Jules]

Difference between the size of IJVs is quite common; often people have a dominant and a non-dominant (or hypoplastic) IJV.

[Isaiah_40_31]

@Andal, Below is an explanation of Nutcracker Syndrome which isn’t truly related to IJV compression in the neck though some people who have IJV compression also have Nutcracker Syndrome. I think the explanation @TML has given you as to why your IJVs are compressed is accurate & having a consult with Dr. Costantino in NY or Dr. Nakaji in AZ (or both) would be your most helpful next step.

Nutcracker Syndrome: Causes, Symptoms and Treatment

•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS .
Does do online or phone consults we believe.

•Dr. Peter Nakaji, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772

[TML]

@Isaiah_40_31 I think @Andal is referring to styloid jugular nutcracker. This is a really good article - it basically agrees with everything we say on this forum - it’s not the length of the styloid that matters but the angle when it comes to IJV compression

Styloid Jugular Nutcracker: The Possible Role of the Styloid Process Spatial...

[Isaiah_40_31]

Thank you, @TML. I saw a link to this article or a similar one yesterday & mentally said , “OOPS!” I’m sorry I didn’t go back to correct my post. Just didn’t realize that cervical IJV compression is also part of the “Nutcracker compression family”.

@Andal, I apologize for my ignorance. I am also always learning new things from our forum members.