What symptoms have you experienced…just want validation that what I’m experiencing is related to Jugular vein compression.
I can’t be upright much .I just feel like activity causes more pulsating Tinnitus, throbbing of my left side, lightheadedness with activity, back pain, underarm pain, hot flashes ( it may be menopause as well) anxiety attacks, feeling of heaviness in the head and body that makes me need to lay down, neck pressure, base of skull pain especially laying down( I do have collaterals there), pressure in head, nose, shaking, heart palpations…other symptoms that make me so scared to the point I have a lot of health anxiety now. I was offered no treatment or suggestions on how to deal with this after my CTA/ CTV. I was offered no treatment or suggestions how to deal with this. I have reached out to the IR who diagnosed me. I don’t know what to do at this point. Experiences, suggestions? Here is a summary of my findings. It was a lot to digest without any hope of treatment. Trying to get a second opinion. I’m feeling very lost and depressed. Thanks for your understanding.
Patient with findings of pulsatile and non-pulsatile tinnitus, and hearing loss. Imaging findings showing multi-focal dehiscence of the left carotid canals at the level of the petrous bone (which is hyper-aerated), and at the level of the sphenoid sinus. There is also dehiscense of the right sigmoid plate.
There are bilateral enlarged posterior condylar veins. There are mild indentations of the upper jugular veins caused by the styloid processes and the C1 lateral masses but no significant stenosis.
Constellation of findings can explain the left sided pulsatile tinnitus. However, we believe that the non-pulsatile tinnitus and hearing loss are likely due to inner ear problems. MRI of the internal auditory canals is however unremarkable. Although some of the symptoms can be explained by venous congestion/CSF hypotension, we don’t appreciate a target for surgical or endovascular interventions on the current imaging investigations.
I’m so sorry that you are suffering and anxious. Please don’t lose hope. “No offer of treatment” comes with this journey unfortunately. Most of us have seen doctors who have no idea what Eagles is or how it affects us. And most of us have been to many doctors before finding the ones that do understand and you are in the right place to get that ball rolling.
I did not have jugular vein compression (or at least diagnosed … none of my imaging was done dynamically so I still have questions). I did have a lot of your symptoms… hot flashes I believe were my trigeminal nerve being irritated… it was more facial flushing than what I would consider menopausal hot flashes, yes on base of skull pain…, yes on pressure in head, no on nose, no on shaking, yes on palpitations.
Do you have elongated styloid(s)? If so, can you upload 3D images? That will help folks on here look at your images. I’ll tag you on directions. There is free software that is surprisingly easy to use.
It was recommended to lay down 5 minutes every hour to help the jugulars drain. (Believe this was Dr. Hauser at Caring Medical… in one of his youtubes on Eagle’s).
I’m not knowledgeable to speak about the hearing loss but it seems a common symptom as well. Have a quick search and you’ll see it discussed. You can reach out directly or via message to those that have your set of symptoms.
I’ll find the Radiant Software note and tag you. Hold on Sunflower…)))
I had bilateral jugular compression, which caused Intracranial Hypertension, so I sympathise with you…Laying down was worse for me, so I had to sleep propped up, that’s worth a try if you haven’t already. The head & ear pressure would increase through the day & were at their worst in the evening. I had pulsatile tinnitus too, on any exertion, not that I could exercise, it was just going upstairs etc. And some hearing loss on my worst side. There is a research paper in the research paper section written by Mr Axon & Mr higgins from the UK who are very experienced with jugular compression, pulsatile tinnitus, Intracranial Hypertension & dehiscense.
Some of your symptoms- anxiety, palpitations- could be due to the vagus nerve being irritated by the styloids- it’s close to them & a common one to be affected.
I’m a bit confuse that they mention CSF hypotension, maybe someone with more knowledge can correct me, but usually compressed jugular veins cause raised intracranial pressure, which only then leads to hypotension if there’s a leak from the pressure…it’s believed that the increased pressure can contribute to wearing of the bones & the dehiscence…
To encourage you, I had surgery to remove the styloids, & it resolved my jugular compression & the horrible symptoms which go with that. So there is treatment which can help, although sometimes if the C1 processes are causing compression too sometimes a C1 shave is needed as well. It’s definitely worth you getting in touch with a doctor experienced with vascular ES- Dr Hepworth in CO is very knowledgeable, he’s not taking new patients at the moment but keep trying his office to see when he is. Unfortunately one of the other doctors experienced with this, Dr Constantino, is on leave right now . Dr Fargen in NC has trained with Dr Hepworth and I believe is starting to do the surgery, here’s a link to a discussion you might find interesting: A little about my story - General / Eagle Syndrome Stories - Living with Eagle
Although not vascular ES specialists, Dr Cognetti in PA and Dr Hackman in NC are very experienced surgeons. I might have forgotten someone, hopefully others can chip in if I have !
Yes, I’m trying to get clarification on the hypotension reference and trying to reach out to the IR with no luck. I think I’m going to try to contact through the portal. I’m getting a lot of pressure in the head and nose area and feeling very unwell when I’m upright. Pressure and pain in my back as well. I’m not sure what’s going on. I basically cry everyday wondering what is happening to me and who I should contact. The medical care here is not very good at all. I’m at a loss as how I should move forward.
I don’t know how long ago you mailed your scans to Dr. Fargen, but it would be very worthwhile following up with a phone call to see if they got the scans & will schedule you for an appointment. Starting on a blood thinner has helped many of our members w/ intracranial hypertension. Do you think your PCP or ENT would prescribe that for you. Getting started ASAP might be very beneficial.
Dealing with healthcare providers here is ridiculous…after scans and procedures I have had I never get a call back…I went to an ER recently and the Dr said Maine healthcare system is 5 years behind and is leaving to work in another state. I basically have to educate medical professionals here. I have been to neurologists who just tell me I have Fibromyalgia. I had to tell an ENT to order a thin slice CT because I had past scans in another state that hinted at a temporal dehiscences. I thought I had SCDS ( semi circular dehiscence syndrome) that can cause debilitating symptoms., and this is a disorder an ENT should have some knowledge about but they never heard of it. It’s very frustrating. My regular PCP probably wouldn’t prescribe a blood thinner because she doesn’t have any understanding of this condition. I would probably reach out to the Boston ENT. I don’t understand why they didn’t prescribe me any?
@Sunflower50 - Doctors who know about ES but aren’t familiar with or don’t take care of related IJV compression don’t know about Rxing a blood thinner to help relieve symptoms. It all goes back to ignorance about ES.
Since you mentioned being told you have fibromyalgia, here’s a link to an interesting research paper that links fibromyalgia & chronic fatigue syndrome to IJV compression. It’s an easy read:
