AI just diagnosed me with jugular vein compression

splusholia

Senior Member
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248
I put all my medical history and symptoms (even the weirdest ones) into ChatGPT and it came back with:


‘You were healthy and active before this, but there were early signs that your circulation might not have been working quite right. You had Raynaud’s, and often experienced facial flushing after meals or alcohol—both signs that your vascular system was under strain.

Then, after a viral illness, things changed dramatically. You became severely unwell almost overnight—you were dizzy, weak, sometimes vomiting, and you could barely speak. Your head felt hot and swollen, like it wasn’t connected to your body properly. This overwhelming crash is most likely explained by impaired venous drainage from your brain, caused by compression of key veins—especially the internal jugulars, the brachiocephalic vein, and the vertebral plexus.’

I’m shocked because this fits all my symptoms. I have a very congested head all the time my head feels heavy and I get red flushing on my right side along with pulsing. Until now I thought the red flushing on ears and face was sinusitis, but now I think it is vascular. I had a month or two of vascular symptoms before I collapsed in the street—such as burning red ears, facial flushing, nose flushing. They did not appear to be linked to food. They were soothed upon lying flat but worse when active.

I don’t know why I’m posting this really… I guess I’m shocked that doctors never even told me that this could be a potential avenue to look at. I also wanted to post it in case it could help anybody else. I’m not confident they will find anything on imaging: maybe I will need an upright MRI. But I feel this is the best hypothesis for my symptoms that I’ve come across so far. I’m aware this isn’t really a diagnosis, more of a ‘hint’!

When my face flushes red, I will still sometimes lose the ability to speak.
 

splusholia

Senior Member
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248
No idea… knowing my luck, probably something that isn’t available on the NHS! And that’s even if I can get something to show up on imaging. Logically and intuitively I feel that there is very much something in this diagnosis by the robot doctor, but I’m not hopeful it will actually lead to anything! Still, at least I can now focus on vein health, etc. if there is any treatment or it shows up on imaging, I will update the thread in case anybody else has similar symptoms!
 

hapl808

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2,389
I don’t know why I’m posting this really… I guess I’m shocked that doctors never even told me that this could be a potential avenue to look at. I also wanted to post it in case it could help anybody else. I’m not confident they will find anything on imaging: maybe I will need an upright MRI. But I feel this is the best hypothesis for my symptoms that I’ve come across so far. I’m aware this isn’t really a diagnosis, more of a ‘hint’!

There are so many things AI can run through that doctors will never consider, let alone discuss with a patient.

I wish that the next step were doctors taking that seriously and running the diagnostics to see if that might be related, but we know that doctors are more likely to just get angry when presented with a possible cause.
 

Wayne

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Ashland, Oregon
This overwhelming crash is most likely explained by impaired venous drainage from your brain, caused by compression of key veins—especially the internal jugulars, the brachiocephalic vein, and the vertebral plexus.’
I have a very congested head all the time my head feels heavy and I get red flushing on my right side along with pulsing. -- at least I can now focus on vein health, etc. if there is any treatment or it shows up on imaging.

Hi @splusholia -- I spend a lot of time thinking and strategizing about how to best address the myriad of issues regarding circulation, drainage, and energy flows in my head, brain and neck areas. It's a priority of mine to eventually be able to make a trip to Caring Medical in Florida that specializes in using prolotherapy for various CCI and associated circulation issues, which is what I feel I'm dealing with.

I would like to get some extensive testing done and determine what's all going on, and what can be done to correct or improve some of my own issues. He seems to have some very in depth knowledge on all of this, plus state of the art diagnostic tools to determine what's all going on. Last I heard, a comprehensive testing costs $3,500, unlikely to be covered by insurance.

I just tried to find a video from Caring Medical that touches on your situation, and came up with THIS ONE. I started the video where he talks about symptoms similar to your description of red flushing on the side of your face. I've watched a good number of videos by Ross Hauser, and it's actually pretty fascinating to learn how much CCI can affect different parts of the body in different ways. One major way is that it impedes normal circulation in the neck and head area.

@Mary -- I would be surprised if sleep quality isn't often affected by these kinds of issues.
 
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splusholia

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248
I wish that the next step were doctors taking that seriously and running the diagnostics to see if that might be related, but we know that doctors are more likely to just get angry when presented with a possible cause.

I agree. I’m scared to bring this up with my doctor, although as I have a relatively friendly and sympathetic doctor at the moment I will give it a try! Eek.
 

splusholia

Senior Member
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248
would like to get some extensive testing done and determine what's all going on, and what can be done to correct or improve some of my own issues. He seems to have some very in depth knowledge on all of this, plus state of the art diagnostic tools to determine what's all going on. Last I heard, a comprehensive testing costs $3,500, unlikely to be covered by insurance.

Same. CCI really seems to fit in my case… just everything about diagnosing and treating it seems so inconvenient and expensive, ugh!
 

andyguitar

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I’m not confident they will find anything on imaging: maybe I will need an upright MRI.
Can be detected with an Ultrasound scan depending what is causing it.
If AI is right, i wonder what the treatment would be?
I knew someone who had this. Symptoms were vertigo and confusion. Treatment was stent. Simple op out the same day.
 

Wayne

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Ashland, Oregon
I’m not confident they will find anything on imaging
Just to mention briefly, in one of the Caring Medical videos, they showed how they're able to image the neck and cervical area while it's in motion, thus getting more precise information than a static image. My understanding is traditional MRIs give you a "picture". What they have at Caring Medical seems to be able to give you a "video". I was pretty wowed when I saw that. I wish I would have bookmarked it.
 

Rufous McKinney

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I don’t know why I’m posting this really… I guess I’m shocked that doctors never even told me that this could be a potential avenue to look at.
Thanks for sharing this. Maybe you should bring it up to a vascular type doctor, and not your regular one if you think they will just be skeptical, or it might poison the well.

Why the skepticism when everything is running up our necks, and neck issues are nearly ubiquitous around here. (rhetorical non- question)

Seems like another large scale medical crime is something we can call: ignoring the neck
Just to mention briefly, in one of the Caring Medical videos
I'm consistently impressed with Dr. Hauser. I'd love to go there, although I would proceed with great care.
 

kushami

Senior Member
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647
It seems there are some doctors at Addenbrooke's Hospital (Cambridge) who are knowledgeable on this topic.

"Life changing response to successive surgical interventions on cranial venous outflow: A case report on chronic fatigue syndrome"
Nicholas P Higgins, Patrick R Axon, Andrew M L Lever

https://pmc.ncbi.nlm.nih.gov/articles/PMC10097901/

(I'm assuming jugular venous obstruction is another way of saying impaired venous drainage.)
 

Jyoti

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3,439
After a long journey (or more likely, somewhere near the middle of one), I have finally had my IJVs measured properly, along with the pressure gradients of the veins in my head and neck. I had both MRI, and CT of brain and neck first which suggested to Dr. Bolognese (who gave me a really reasonable opinion --$350 for an extensive review) that I had 'intense bilateral IJV compression and profuse collaterals from C0-C3.' He sent me to an interventional radiologist who did a catheter angio/venogram. Not a fun test.

But it turns out I have a completely occluded left IJV ( 'a pancake') and a partially occluded right IJV. The pressure in my veins was almost uniformly high. The next day I also had a lumbar puncture. Not surprisingly, the opening pressure was high. He took a lot of fluid off and I had a week where my brain functioned better, my heart rate (tachycardia really does me in) and my whole body seemed to function well. It was like an existential threat was removed and while I wasn't ready to take on the world, I felt comfortable in this body, able to move around with ease and familiarity. Kind of hard to describe, but...

CCI and the overlap with venous compression is another conundrum. I believe my C1 tubercles are the culprit for me. There is a lot of consideration at present about what you 'fix' first if you can fix anything--the compression or the instability. These decompression surgeries are pretty new, but some really great surgeons are discovering more all the time. And there is a wonderful doctor (Yoon-Hee Cha) in Minneapolis who is treating milder compressions with Botox injections. Just another avenue.

So, yeah.... there are many subsets of ME/CFS but this is definitely a feature/cause of symptoms for some of us. Well worth investigating, I think, if you suspect there may be an issue.
 

Cipher

Administrator
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1,370
So, yeah.... there are many subsets of ME/CFS but this is definitely a feature/cause of symptoms for some of us. Well worth investigating, I think, if you suspect there may be an issue.
I'm curious, do you have head/neck symptoms like a heavy head feeling, headache, neck pain, tinnitus, etc?
 

Jyoti

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3,439
Very much so. I have long suspected CCI. Neck pain has been a constant since I become ill. Tinnitus and headache are clearly relational to the level of intracranial pressure. I had had all of these symptoms--and more associated with IIH-- but some of them were mild enough to be dismissible in the vast sea of symptoms we all endure, until about 16 months ago when an osteopathic treatment seemed to have 'cured' me of everything for two days, followed by an incredibly powerful increase in intracranial pressure that literally felled me. That is when I started investigating in earnest. Are these symptoms you have?
 

Jyoti

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Thanks. @Cipher -- I guess I am glad that these are not your symptoms, but of course, you have your own to sort. Whatever they may be and wherever they may lead. I also have a compressed left Iliac vein and a compressed subclavian vein, so clearly my subset has to do with connective tissue failure. I have no idea what subset I'd like to be in, but maybe it is fortunate we don't get to choose! Good luck to you as well.
 
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