I’m hoping to get some input from others that have cervical instability in addition to jugular vein compression.
My non-dominant side is 90% occluded and my dominant side is 50% occluded. I also have both sides of my transverse and sigmoid sinus that are narrow. He called it tandem stenosis. I do have arachnoid granulation also
When I stand up, my head feels heavy, and I feel the need to lay down ASAP. Would that make sense that this is From the lack of blood in my brain and body? Has anyone else with jugular vein compression experienced this?
I’ve heard of people with cervical instability that have to lay down all day. But I’m wondering if any others with jugular main issues are experiencing this? My other symptoms are the typical compression symptoms, such as extreme brain fog, insomnia, some nausea.
@Luckee7 for some people with IJV compression, standing up makes their symptoms worse. For others, laying down makes their symptoms worse. It also depends on what is causing the IJV compression. For example, if it’s soft tissues, the muscles may be more contracted when standing and thus worsening compression. It’s important to know all the structures that are contributing to any compression down the full lenght of the neck. Soft tissues and bones can also compress the ICAs causing weakness which could contribute to heavy head and muscle imbalances.
I think I already recommended it, but I would be happy to take a look at the entirety of your imaging if you’re able to message me a link to a google drive folder that has the CT files in it. I’ll give your imaging a comprehensive review and come back with annotated images. Let me know your thoughts. PDFs or screenshots of the imaging is difficult because there are so many slices and structures to assess.
I might add that on my catheter venogram, my pressures were extremely high. The highest was 50. So it makes sense when I am upright, that I would want to relieve some of that pressure. My heart starts pounding. My head has a clear heartbeat. And I almost feel like passing out. I am not well at all. I don’t believe I’m a candidate if I have to fly. I’m homebound.
I have all of my images on one CD. I’m not sure if I would be able to transfer just one? I don’t know how to.
Is there anyone else in these forums that are bedbound from jugular vein compression/transverse sinus stenosis? I can only be upright for about 10 minutes. It seems that everyone is just symptomatic, but still able to live a normal life.
You would need to transfer all of the files off the CD and onto your computer. Then move all of those files into a folder on google drive and then send me a link to that folder. That would be the only way that I could look through the entirety of your imaging.
I am also bedbound due to IJV (but also ICA compressions). Been so for over a year. I have surgery next week though. So fingers crossed things change. Given that I have the same symptoms but I also have ICA compression, it further promotes the need for a thorough look at both ECAs, both ICAs, and both IJVs for the full length of your neck. If you can get the imaging to me I’d be happy to help!
Thank you so much for your response. How did you get your diagnosis for that? I’ve often wondered if my SCM muscles or something else is causing my carotid to be compressed as well. Do you have a noticeable pulse beating in your neck? When I lay down my whole neck on one side is beating to my heart. I know that’s not my jugular.
Can you fill me in on how you got your diagnosis? How they finally figured all of that out?
Who is doing your surgery? And do they do something different aside from decompression because the carotids are involved? Were your pressures high? Mine were off the charts.
I discovered the carotid involvement on my own by going through my CT imaging. Then I got a neuroradiology second opinion that confirmed some of it, then I took it to my ENT who confirmed all of it. Both styloids are compressing my IJVs against C1, but they are also compressed between SCMs and anterior scalenes. My dangerous conditions is my left greater horn of my hyoid is digging into my ICA (directly above the carotid sinus) and my thyroid cartilage is compressing my CCA. Surgery next week for left styloidectomy and trim of left greater horn. Surgeon is going to assess the thyroid cartilage more while I’m opened up. I live in Nova Scotia, Canada and am getting surgery here.
Way to do your research! What image is that where you labeled scalines and Scm muscles? Are you able to see those muscles in a CTA or CTV? You have clearly done your research.
I’m curious to look at my images though and look for those SCM muscles. That could make sense about why I can’t stand up for long. The muscles can contract therefore blocking the veins.
I hope you’re feeling better soon. You said you were homebound because of this. Are there many others in living with eagles that are homebound? it doesn’t seem like it.
I hope your surgery goes well.
@Luckee7 - We have several members who are bed/homebound & have had a number of members who were in the past. Once vES gets to a certain point without being treated, becoming bedbound due to head pressure is not uncommon.
The feeling of your head being too heavy seems to be a common CCI symptom- have you been diagnosed with CCI or are you trying to work out if it could be the issue? If you haven’t been diagnosed, @PatientD posted this info for looking at yourself at home:
‘On instability topic, here are my practical tests to check yourself. Look in mirror - is your head slightly tilted to one side, is one shoulder higher than the other, if so is the hip higher on one side than other (put hands on hips), is one leg slightly shorter than other - get friend or family to help - wear flat shoes - lie flat- have companion put your heels together. If one heel is slightly shorter than other they can see that & tell you. If you have many of these characteristics this may suggest you have instability issue. Our brains keep our eyes even with the horizon & will alter body below in order to do that.’
You could try seeing if a blood thinner helps with your head pressure symptoms? Some members have tried Plavix, Brillinta, Eliquis, Xarelto, or Diamox, & also some supplements like Creatine, Trimetazidine & Citicoline have helped… @eggisnotaplant is in a similar situation to you, here’s a link to her discussion: Need a help with a doctor for differential diagnostics of IJV compression or possible formation in carotid sinus - General - Living with Eagle
