New to forum, wanting help to view imaging and opinions

[Shellymo]

Hello, I have received a warm welcome to the forum after signing up. A little about me, my daughter was diagnosed last year with IIH (1/2023), her LP was 42. She had debilitating pressure and vision loss/papilledema. A neuro ophthalmologist found on her MRI/MRV that she had stenosis of her right transverse sinus which then resulted in her getting a stent placed in 4/2023. She recovered well and returned to work/life. She had a venogram in December per protocol of her INR and it showed narrowing above the stent.

This January 2024 she had repeat symptoms of intracranial pressure but no papilledema. Her doctors in KC did not acknowledge that she had anything but migraines. Her symptoms were debilitating and she was not able to function/work or really do anything. They did not do any testing but finally we pressed for a LP, which was 25-they said that is normal.

In late April, we got a second opinion with Dr. Fargen who did his testing and she had 2 more stents placed above the first in her sagittal sinus for stenosis. Dr. Fargen noticed she had collateral veins on her original tests and subsequently with his testing, has found she has stenosis of her internal jugular veins and possible compression. Vascular Eagle Syndrome was his thought. She had a CT angio in May and has been referred to a couple of surgeons for possible styloidectomy and/or decompression.

I have viewed the images on a 3D viewer but have little knowledge of all the anatomy. I have been reading many posts here and would like to see any of the advanced imaging members have thoughts about her anatomy as we wait for appointments. Thanks in advance.

[Shellymo]

I wanted to add that I have uploaded the image to the dicomlibrary and can share the link: https://dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.20240627215042943.70333078798229064675 with all the dicom files

this is one of the 3d views of her right dominant side

this is her left hypoplastic side

[Isaiah_40_31]

@Shellymo - Welcome to our forum! I’m sorry for the struggles your daughter has had & continues having. You posted a couple of good images of the styloids, but the compression of your daughter’s IJVs isn’t obvious to me in either image. I’m sorry to say that I’m not good at finding the best images in the dicom library links so will hope that someone else can offer an opinion.

Your daughter’s styloids are definitely long & pretty thick up at the top end which might explain why they’re causing IJV compression. I’ve annotated your two pictures & attached them below. I also noticed that the right & left styloids are putting a little pressure on her external carotid artery. I’ve circled the area in the last image below. Finally, she has lost the lordotic curve in her cervical spine. Many of our members have this situation, & we’ve gone the rounds w/ can a straight cervical spine cause ES or does ES cause the spine to straighten. Regardless of the answer, the cervical spine can regain it’s curve with PT & practicing good postural habits. For some members working on that process has helped relieve symptoms. There is a lot of good information on our forum on the topic of military neck & forward head posture which can both be related to poor posture. Here is a link to get you started:

My Favourite List of Research/Educational Resources

Similarly to the highly useful (at least for myself) list of physiotherapy/anatomy-related video resources for self-education, this is meant to be a list of my favourite research papers/textbooks etc. Mostly for myself to remember at those times when I want to share something in particular with someone, but can’t quickly find it. The less offtopic in this thread, the better https://journals.physiology.org/doi/full/10.1152/physrev.00017.2022 The molecular athlete: exercise phy…

The red oval by the angle of the lower jaw is where the styloid is pushing on the external carotid artery. The same situation is occurring on the left side.

This image of a proper lordotic neck curve belongs to @Henrik one of our moderators.

I hope this information is helpful. Henrik may be able to view the dicom library images & offer some other input.

[Jules]

They’re certainly long styloids, longer than average! Does your daughter have any other ES symptoms, nerve pain etc.?
Dr Fargen is pretty expert, so if he feels that the styloids are causing compression then he knows what he’s talking about…it could be that there’s compression at the skull base where the IJV exits the brain, which wouldn’t be visible on this CT.
Some of our members who are really knowledgeable with reading the scans are having a break right now, I only have basic knowledge!
I hope that your daughter can get some help, so frustrating that she’s been through so much & is still having symptoms

[Shellymo]

@Isaiah_40_31 Thank you for the labeling of the images. I will look further into the link on anatomy.

There was no mention of carotid stenosis during testing but I can review what symptoms would occur with that. I wondered about what was laying over the styloid.

Her atlas chiropractor this year did talk about the lordosis and her imaging from last year it was mentioned in the report but no physician spoke about it at that time. Will review suggestion for PT with her and her PCP

[Shellymo]

@Jules she has visual snow, right ear pain, neck pain, headache 7/10 most days and most debilitating right now is intense nausea and vomiting.

Testing 4/29 showed she has compression at C1 on both sides and c5-6 on right with dynamic testing on the venogram. She is hyper mobile and her neck turns very far. During the testing her ijv was almost completely blocked when turning her head.

Her LP was 21 that day and when she turned her head to the right it shot up to 30 then lowered back down in neutral position showing Dr Fargen that she has compression not seen on imaging

Thank you for all your thoughts and support

[Jules]

It does sound as if getting a styloidectomy may well help her then, really rough for her

[Isaiah_40_31]

@Shellymo - I made a mistake, & it’s the external carotid artery overlaying your daughter’s styloids on each side not the internal carotids. The fact that the carotids are laying over the styloids doesn’t necessarily mean they’re being impacted, but it is a possibility that should be considered.
Here’s a great image of the vessels that can be impacted by ES. It came from this research article: Minimally Invasive Cervical Styloidectomy in Stylohyoid Syndrome (Eagle Syndrome) - PMC

[Henrik]

I’ve been looking at them today, i’ve put together some key elements that i thought was interesting. I just need to label everything

[Shellymo]

@Isaiah_40_31 thank you for labeling each spot. I do wonder about her vagus nerve in the carotid sheath by her symptoms. I went back to look at the testing and the arteriogram said all arteries were normal so maybe they are not being affected.

[Shellymo]

@Henrik thank you so much! I am interested to see what a more experienced person at looking at imaging thinks. Her appointment with the surgeon is not until 7/31. It will be virtual and I want to understand everything he talks about as I am sure it will help make the most of our time with him.

[Isaiah_40_31]

Since the vagus nerve is so extensive, it’s often irritated by elongated styloids & even by other soft tissues in the area. The nerves are not visible by normal scans, but the FIESTA MRI or neurogram are specifically designed to look at nerves. I’ve heard the machines that do those scans are few & far between but someone recently posted they are becoming more common. Perhaps requesting that type of scan for your daughter would help identify whether her vagus nerve is being severely impacted, too. I’ve attached an image of the vagus nerve so you can see that it covers a lot of the upper body. It affects body functions from head to groin.
Vagus Nerve Image.docx (81.7 KB)

[Henrik]

I’ve been taking a look at the scans and 3D images off your daugther.

First off all I agree to that there is possible IJV compression aswell as the ECA. But in my opinion it does look like the C1 Atlas is making the Styloids pushing or resting against ECA aswell as irritating the IJV. But that is hard to decide what causes what, but the Styloids are unusual thick. It looks like two fine chissels! So bear in mind that the width off the Styloids can also be the main issue.

I’ve messured width and length on the Styloids see images below, but i must disclaim these are not accurate messurments. When radilogists messure the Styloids, there’s a specific way to messure, and i don’t know these standards. But i’ve messured from the skull roughly.

It seems also likely that C1 Atlas is irritating or compressing the EJV aswell, see images below. I’ve just noticed how thicker the EJV is on the left side and how ‘‘messy’’ arranged it is compared to the right side.

Another thing to note, is the spine; There could be mild scoliosis by how the spine is curving it does not look straight. Your daughter has also lost her lordotic curve, im noticing in the 3D images that there is not much space between the vertebra almost like the spine is ‘‘fused’’ together but that could be the rendering off the images as i did not find that in the angio CT scans, and im infact not sure how to messure the space between them.

Note: I’ve done the same mistake as Isaiah, i’ve misslabeled ECA as ICA and CA.

Another note: I’ve also added and labeld the optical nerve, sometimes there could be changes in the optical nerve. Because off disturbances in he facial nerves aswell as IJV/CA compression. In my journey i’ve had freqeunt eyesight issues wich has gotten better after surgery.

Lastly, thank you for sharing these images as we all want to learn about our anotomy aswell as help eachother out !
Has your daughter been schedueld for surgery or is it in the planing stages ?

[Isaiah_40_31]

Thank you for adding additional images, @Henrik & for sharing what you see in the images.

[Shellymo]

@Henrik thank you for your reviews of her imaging and all your great thoughts and labeling. I too think the thick and somewhat long styloids are compressing her internal jugular veins at C1 along with the placement of her atlas. I am not sure of the significance of the greater corunua you pointed out. She definitely has vision issues.

I went back to her venogram and it noted severe stenosis of her r IJV with rotation of her head to the left at C1 then when she turned to the right it had severe stenosis of the r IJV at C5-6. That is what I am curious to know what is causing that compression lower in her neck.

Her left IJV is small with moderate stenosis to severe stenosis from C1-4 and it occludes at C4-6 when she turns her head to the left.

With all that being said, she has been referred to 2 surgeons. Her first appointment is 7/31 with Dr. Costantino and the other she cannot be seen until November. While she doesn’t want another surgery, she does want to get relief and heal by having surgery if that is what it takes.

[Isaiah_40_31]

@Shellymo

That is what I am curious to know what is causing that compression lower in her neck.

Besides bony compression of the IJV by the styloid & C1 (& sometimes C2), the IJV can be compressed by muscle or scar tissue, nerves, or other soft tissues that are in the neck. Thus, it’s possible that the lower compressions at L C4-6 & R C5-6 are caused by soft tissue.

[Shellymo]

@Isaiah_40_31 I have thought that and those don’t show up on the imaging. I have read people find out from the surgeons when they do surgery that they find other things were compressing the ijv. I will be following everyones journey on the forum and can update as we find out more also.

[Isaiah_40_31]

That is correct. The compression they cause can show up in the imaging but the soft tissue cause(s) do not show up. I also forgot to mention in the soft tissue list that other veins/arteries can also be compressors.

I have bilateral IJV compression. I’ve had bilateral styloidectomies. On the left, my IJV is clearly being squashed between the remains of my left styloid & C1; on the right, nothing shows up as a compressor, thus, I would expect that if I had surgery to decompress my right IJV, scar tissue from my previous styloidectomy or some other type of soft tissue would be found to be the culprit.

[Henrik]

No problem Shelly, im happy to help !

I’ve discussed some other images with Isaiah, that got my attention and is infact interesting images.

First image here, you’ll see an axial or in other words in birds view image if it was a technical drawing, the image off the skull you’re looking at is at the level off C1Atlas. There is clearly compression off the R IJV, the shape off the IJV aswell as it’s so close to the C1 transvers process reveals compression.

@Shellymo

I am not sure of the significance of the greater corunua you pointed out

That is actually the lesser horn off the cornu, I miss labeled it. Sorry about that, and thanks Isaiah_40_31 for correcting me, so that could also indicate that there is a ‘‘starting’’ calcification on the ligament, wich can cause symptoms(in my experience) restriction off the jaw muscles and movement, first bite symptoms, swollwing difficulties etc.

@Shellymo

She definitely has vision issues

if so, I would advice you to take her to an optician, to take tests like pressure test off the eye and also see if there is any obstruction on the optical nerve or that there could be changes off blood flow. As i’ve mentioned i had some unexplainable changes off the vision, there were no pressure changes but there were disturbance off the optical nerve aswell as the optician noted that there was slight changes in blood flow to the eye. This restored itself after surgery, and i took test results after surgery that can proove itself in comparisson with the tests i took before surgery. So i would definetly have an optician look at her eyes and vision.

The last thing that got my attention, I’ve discussed it with Isaiah aswell; In this image you’re looking in axial view off the skull. almost at the top off the skull before you’re entering the level off you ear canals. There is a white small dot with dark colour in the mid section off the skull, to the right there is a area that is in dark grey/medium grey. Im not sure what that could be, but both me and Isaiah have our thoughts that there could be fluid accumelation, wich also could indicate CSF leak (Cerebrospinal fluid ) but this we’re not sure about as we have never seen it before and it’s odd, it could also be something happening with the transverse sinus. As for now i think that this you’ll have to have an experienced doctor or radilogist to look at!

Possible symptoms off CSF Leak:

• Cranial Hypertension
• Constant Migrene
• Nasal fluid(wich is transparant colour, not yellow or greenish colour) dripping out when bending over
• Fluid from ear canal
• Visual disturbance
• Nausea and Vomitting
• Neck pain or stiffness
• Change in hearing, muffled hearing in the ears
• Salty metallic taste in mouth
• Pain between the shoulder blades

@Shellymo

then when she turned to the right it had severe stenosis of the r IJV at C5-6. That is what I am curious to know what is causing that compression lower in her neck.

I have my thoughts here as i’ve been thinking abit, but that will be only guesswork.

So if you pay attention to every vertabra’s in your daughters spine, some off the disks seems to be missaligned aswell as some unormal curveture in the spine, and the loss of lordotic curve i would say starts about in T1 or C7 . This can cause tension on soft tissue, thus tension on muscles compressing blood vessels, nerves etc further down.

[Henrik]

Im terrible sorry but i see i’ve made one more mistake, i have mixed between Right and Left side on the scans. It is now sorted out, and i’ve gone over and marked with a red R on the ones that was incorrect.

Sometimes it can be a bit confusing to read scans and sort out wich side you are actually looking at