@MGORNEAU has kindly given you lots of encouragement and info, I agree that you need to be strong and not give up, it’s hard to keep fighting when you’re feeling rough I know! You could try taking a research paper or tow to appointments , pick ones that match your symptoms… I’m bemused at her comment about scans giving you cancer, obviously if you were to have lots of CTs and x-rays then the radiation does add up, but MRIs don’t use radiation so you’re not in any danger from the scans you’ve had so far! It’s hard to think of answers at the time though when you’re fobbed off by a doctor though, I know! I hope that Dr Patel is helpful for you to get a CT scan… 
3 Likes
@Jules you all are so encouraging, I’m really thankful for it. I will keep on going and I will be making an appt with Dr. Patel. I will keep you all updated!!
3 Likes
@Isaiah_40_31 hi!! I went to the eye doctor today and on my retinal scan he found that I have Neovascularization of the retina. That could explain the pain behind my eyes. I have to go in for another more in depth scan but he was saying it could be from prediabetes(my bloodwork has always been fine and I eat pretty normal). It seems that prediabetes causes issues from constricting of the blood vessels - maybe I’m working but wouldn’t eagles cause similar issues? I read it can also be caused from restricted blood flow of the carotid artery. I’m wondering if this is another signifier of eagles. As you know, I’ve been experiencing eye issues and ear issues. Also, I had an mri last year and they found a lesion on my brain - wondering if that could also be from eagles? What do you think?
3 Likes
I’m sorry that you need to have another scan for your eyes…
You’re right that narrowed ICA can cause narrowing of the blood vessels to the eye as it supplies the ophthalmic artery :
Can narrowing of the internal carotid artery cause narrowed blood vessels to the eye?
Yes, narrowing of the internal carotid artery can lead to reduced blood flow to the eye, potentially causing symptoms such as vision loss or eye pain. This condition, known as ocular ischemic syndrome, occurs when plaque buildup in the carotid artery restricts blood flow to the eyes, which can result in vision issues and eye pain. It is important to seek medical attention if you experience symptoms such as vision changes or eye pain, as early diagnosis and treatment can help prevent serious complications.
We’ve had other members with eye pain & vision issues, if there’s compression of the carotid artery it can cause pain all along it’s length…
TIAs can cause lesions on the brain, and carotid compression can cause these, I would presume that’s the only link with ES? You mention that you’ve blacked out , so I guess it’s possible…I think immune and inflammatory conditions can cause lesions too, so I don’t know if MCAS would be linked to this?
But it’s certainly another reason to try and see one of the VES doctors if you can
3 Likes
@SwampFrolicker - @Jules has give you an excellent & thorough reply to your question. I just want to add that there’s another eye problem that carotid compression can cause called Horner Syndrome. We’ve had a few members who had carotid compression who were diagnosed with it, but I think you may be the first to have neovascularization of the retina.
2 Likes
This is so very interesting to read.
I’ve been seeing an opthalmologist for more than 12 years now with a diagnosis of retinal vasculitis with microanuerysms, and have recently wondered if it’s connected to my newly diagnosed Stylojugular syndrome…
3 Likes
@htren This is what OpenEvidence has to say about the potential connection:
The connection between IJV compression and retinal NV is not well-established in the literature but can be understood through a chain of hemodynamic consequences:
-
Cerebral venous outflow obstruction → elevated intracranial pressure (ICP): IJV compression at the styloid-C1 junction causes venous outflow obstruction, which impairs CSF reabsorption and raises ICP, producing a pseudotumor cerebri-like syndrome. Bilateral compression or compression of the dominant IJV is most clinically significant. [1-3]
-
Impaired ocular venous drainage: Jugular venous reflux and outflow obstruction directly affect the ocular venous system. Patients with jugular venous reflux demonstrate significantly dilated retinal venules, and this effect is transmitted to the ocular circulation, as demonstrated during Valsalva maneuver studies. IJV stenosis has been associated with transient monocular blindness, visual impairment, and papilledema. [4-7]
-
Venous stasis retinopathy: A case report documented venous-stasis retinopathy directly attributable to IJV thrombosis, in the absence of significant carotid pathology, suggesting that IJV outflow obstruction alone can produce retinal venous congestion. Chronic retinal venous stasis can progress to ischemia and, in severe cases, neovascularization — analogous to the well-established pathway in retinal vein occlusion, where the severity and extent of retinal ischemia are the principal determinants of NV development. [8-9]
-
Retinal venous stasis as part of a broader etiologic framework: A recent etiologic reclassification of retinal vein occlusion recognizes venous congestion secondary to translaminar pressure gradient abnormalities (including elevated ICP) as a distinct category of retinal venous stasis disorders, separate from traditional arteriovenous crossing-point compression. [10]
5 Likes
Thank you everyone for the responses and thank you Jules. I found it very informative. I have gotten more scary findings in the past couple weeks than I have in years of trying to figure out what is wrong with me. There is a lot still up in the air so I will let you know what I find out with more testing.
I’m curious, do you all know if you can have jugular and carotid compression or is it usually one way?
@htren this is interesting to hear as well. Do you have any symptoms associated? Also, do you need treatment for it? I am scared of the thought of of injections in my eyes but more scared of losing my vision.
3 Likes
It’s not as common, usually one or the other, but it is possible to have both, yes.
2 Likes
@SwampFrolicker - The few of our members who have both IJV & carotid compressions most often have IJV compression between the styloid(s) & the TPs of C1, & the carotid compression is caused by the greater horn(s) of the hyoid bone, so it’s lower down in the neck. There are, of course, other causes of compression for both the IJVs & carotids, but what I’ve mentioned are the most common.
2 Likes
Thank you all for the responses!
2 Likes