New to forum, wanting help to view imaging and opinions

@Henrik I too get confused looking at scans but it makes sense that is her right side with the larger ijv. I appreciate all your help identifying possible issues to speak with the surgeon.

She has had full eye exams but they really didn’t seem to look any further than papilledema which she had last year that resolved with transverse stent.

This year she had no papilledema which has stopped the neuro ophthalmologist, neurologist, interventional radiologist and neurosurgeon in her town to say she only had migraines and nothing further. So frustrating as we can read medical journals and learn that there can be stenosis, pressure and a need for further testing based on all her other symptoms. For 3 months they did nothing but discourage her and disappoint with their lack of exploring any cause or solutions.

Thankfully with encouragement from online IIh and stent groups we pursued a second opinion with Dr Fargen. And here we are! In another group of people who understand and validate what she is going through, so thank you and @Isaiah_40_31 and @Jules.

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@henrik, we had our appointment today with Dr. Costantino. He did not review the scans with us like I anticipated by labeling or making observations. He listened and reviewed her medical record/symptoms and recent surgery but wants to have an MRI of her head-especially to look at the optic nerves and pituitary to confirm she continues to have intracranial hypertension. When you pointed out the optic nerves in her CT-what were you observing?

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I am looking at her images again after meeting with Dr. Costantino and wondering if anyone in the group can comment on her optic nerves and or signs of intracranial pressure seen on the CT. He is ordering an MRI to look closer at this area, it is so hard to wait for tests to be scheduled and done. Her last MRI was january 2023 when she was diagnosed with IIH and prior to any stenting for the stenosis of her veins so it will be good to have a look at one again with his expertise.

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Hi @Shellymo,

Not part of the group, but just letting you know that I’d be up for taking a look at it in the morning. Also, not sure whether he’s available, but I know @KoolDude has commented on intracranial pressure in the past as well…

I’d basically be stepping through the criteria outlined in this article:

Definitely not medically trained, btw. I can turn it into a screencast so you can see where I’m coming from. Also, just wanted to make sure you’re aware that the imaging data may or may not betray detailed facial metrics, which in this day and age… Would be more comfortable with your explicit permission.

Sorry to hear that it’s gotten to a point where she’s had to have two LPs, btw…

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@Chan thank you for the offer to look. I have reviewed the article you referenced and am not skilled enough to compare her scans to images in medical publications. While Dr Constantino didn’t express doubt of pressure other physicians in the past have downplayed her symptoms and others like Dr Fargen have validated what she is experiencing. It creates a certain feeling of needing validation from scans and hope to find the etiology. He kept saying another lp for proof if no sign of pressure but that is really hard on her except the one with Dr Fargen and the special needle he used. I am hoping he gets enough information from the MRI to avoid that.

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The styloids do look long. If we assume the entire length of the whiteness is the styloid process, then they get into around 40mm. If we assume that the bits without a darker inside are just calcifications of the stylohyoid ligament, then it’s shorter. The left styloid process looks like it’s thicker. Without looking at any dynamic imaging, however, it’s hard to say anything about whether they are problematic per se. Right IJV looks pretty good all the way to the base in the CT from May. Perhaps head flexion could cause the SP to perturb ECA on either side but I don’t see any deformation as is, though it’s kind of blurry where the two pass each other. The left IJV’s got like a dark spot in the middle in axial view that may or may not indicate something about the contrast, and therefore any blood, not filling in there as quickly as the right. Assuming that whatever dots @Henrik mentioned have something to do with the stents (rather than CSF leak…?) the right transverse sinus is nice and visible. On the other hand, it’s hard to tell whether the left transverse sinus is communicating with the left sigmoid sinus at all. Not read on what the implications are off-hand. I’m sure this is noted in the reports.

No comment on any cranial nerves that may or may not be involved, nor on any hyoid-adjacent calcifications.

At a glance, thyroids look kind of asymmetric, though again, I’m unread on any implications off-hand. Generally, your daughter appears to be leaning towards the left in the CT machine, which could indicate some mild scoliosis lower down the spine. Definite loss of cervical spine lordosis, but it could be worse. Any MRIs you have on file could tell you a little more about whether there’s any bulging, herniation, discoloration, etc. Recommend PT as well, perhaps bring along a report from an orthopaedist who’ll comment on or order MRI imaging. May be difficult to coordinate, but I’m not familiar enough with PTs to know whether they know how to prevent injury in complex cases.

Styloid process length is ~39mm on the thicker left side, or ~31mm if we treat the bits without a dark inside as stylohyoid ligament calcification rather than styloid process elongation. Over the 30mm benchmark either way.

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Turning now to your specific concerns:

As @Henrik mentioned, there does appear to be some concerning tortuosity of the optic nerves. On sagittal view of either orbit, you can see the optic nerve (which is easy to spot), coursing down then up before piercing the eye ball. The idea here, IIRC, is that there’s a sheath that protects the optic nerve, much like the dura protects the brain, and inside that sheath is CSF, which in IIH, causes the sheath to stretch and distend. It’s probably worth going through the literature for a severity grade.

Also, it’s hard to be sure with the CT, but the sella turcica does look empty. In other words, the pituitary gland (aka hypophysis) appears to have been flattened by CSF pressure. Pituitary gland involution generally is normal, but definitely not in one’s twenties.

From my scant recollection of the few papers I’d skimmed, these two alone are pretty strong signs of intracranial pressure.

I don’t want to overwhelm you with too much or overload this thread, so feel free to poke at anything above, eg for references and evidence. If you want to try to figure it out yourself, I’ve sent you some resources that I hope you’re in a position to make use of. I’ll see if I can get around to narrating a screencast for you with just the above remarks in the next couple days to maybe get you started.

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@Shellymo - I neglected to comment earlier that your daughter’s left styloid is the thickest one I’ve seen on our forum. The right is thick too, but between the styloid & the calcified section of stylohoid ligament, on the right, there is a lot of calcification there as well. As you know by now, both elongated styloid & calcified ligament even if separate can be troublemakers. Thickness, curve, angle of growth, how pointed, twisted or irregularly shaped the styloids are all play into the level of problems they can cause.

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Thank You @Chan for chiming in on this with further possible good explanation as I’ve had to take a break from the forum, trying to take some care off myself at times ( I’m six months post op, trying to survive nerve pain and a bit off swelling and other problems too :sweat_smile:).

@Shellymo

I was not actually looking at anything specific off the optic nerve, though i had a “feeling” based on looking fast trough the scans so i added it to the post so you/or her doctor or other medical sertified people could see if there were anything concerning as I’ve had troubles with eyesight myself trough my journey with ES.

As mentioned before none off us are medical experienced so all of what we state or comment here has to be talked to with a medical trained people :blush:

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@Shellymo

Just a further remark on the thyroids looking at it again now in axial view. I’d want to check through all the reports you have for any mention of the thyroids. They may have already been deemed unremarkable by others, but if unmentioned, you may want to make an appointment with a GP, or get some professional eyes on your daughter’s thyroids sooner rather than later: there appears to be some glaring, let’s call it, “non-homogeneity” visible on both sides of the thyroids, more pronounced on the left side. Perhaps you can convince Dr. Costantino’s office to take a look right away for quick comment.

Surely, there are a lot of benign things that can go on in any given body part that can look odd in imaging, but if it is of medical significance, it may go a long way in resolving etiology.

Here’s a screenshot for now:

Here’s what mine looks like roughly near the given location for some comparison:

Chan, Henrik and Isaiah_40_31, thank you all for your feedback. I will study her scans again and begin a list of questions specific to those areas for her next appointment. @Chan they did say on the report for the CT that occasional small thyroid nodules are present and could warrant an ultrasound for correlation. I believe Dr. Costantino saw these things on the CT but did not comment on any part of the CT as he wants an MRI then we would have follow up after that. Or there is nothing and it really is her styloids and compression of her jugulars. Either way we look forward to some answers and between him and Dr. Fargen and possibly Dr. Nakaji if he gives feedback on her case we are asking the right physicians.

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It’s been a bit of time but we are getting closer to appointments with the surgeons. My daughter’s new neurologist noticed inflammation of her neck in September and ordered an mri of her soft tissue. It has information about her thyroid as you noticed plus one other cyst located on her thyroglossal duct.

I thought you might be interested in seeing the images

She has an ultrasound on Monday. We plan to ask if there is any connection to her compression of her ijv at her appointments.

I’m not sure, @Chan hasn’t been on the site recently, I think he may have been having surgery, so might not be able to have a look for you. I hope your daughter’s ultrasound goes well next week.

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