@Sprinter , You keep mentioning a swelling or distended vein. A quick google search of “distended jugular” indicates you need to see a cardiologist? Have you seen a cardiologist? What does your doctor think about it?
2 Likes
I’ve been referred to cardiologist but they don’t seem to worry about it being swollen and large or concerned about my cardiology. I’ve had an angiogram that didn’t result in abnormalities and a 24 hour ECG that I haven’t heard back from yet.
They don’t seem to think there is a cardiology issue as nothing obvious on tests.
3 Likes
I have some more MRI and CT scans I can get hold of tomorrow that might show more.
Edit
Some information I have forgotten to mention
Tested positive for a d-dimer 743 a month a go suspected possible blood clot so they scanned my chest and arteries in the chest area came back clear but no other areas were scanned or checked at that time.
Right side of my body is apparently bigger more so than my left side no explanation has been given as to why - possibly has something to do with the swollen vein right side
I have a chest CT I can try and get access too
Nobody seems to know what’s causing all my issues
3 Likes
Hi Sprinter, (CC: @Isaiah_40_31 for directing me to your post)
I am reviewing your CT scan now.
Your IJVs are healthy and normal with good bilateral flow.
Your symptoms sounded so much like mine so I wanted to check for hyoid bone syndrome. When the tip of the hyoid bone presses on the carotid artery it can cause all of the symptoms you describe.
Your right greater horn of the hyoid bone is very close to the internal carotid artery. Keep in mind on the CTA what we are seeing with the artery is the blood flow through the artery, you cannot see the outer wall of the vessel itself. It is highly likely that in reality the hyoid bone is pressing up against the carotid artery and this artery is highly innervated so it can cause a lot of symptoms. The condition is easily treated with a hyoid bone resection and you can test it by palpating the hyoid bone to see if it provokes symptoms or if the tip of the hyoid bone is tender on that side.
You also have these wild loops in your internal carotid arteries, unlike anything I’ve ever seen. This can’t be good and I would highly recommend getting a consult with a vascular surgeon to discuss. On the right side the loop is where the styloid process is:
l hope this helps,
-Connor
5 Likes
@CJsBattle and @Sprinter ,
While we are on the topic of looping arteries, if you follow the left vertebral artery it seems there maybe a loop also? There is something different with the cranial portion of the vertebral arteries.
Given the positive d-dimer test and the association of loops and atherosclerosis, I think any of these loops are the best guess so far…
2 Likes
Just to further my thought, images like this make me wonder if you have “Vertebral Artery Compression Syndrome” where the vertebral artery is pressing into the brainstem and/or cranial nerves.
3 Likes
@boogs99 & @CJsBattle - Thank you so much for taking time to help @Sprinter. I wish @Jules & I could be more helpful with scans, but we have a lot on our plates just keeping up w/ everyone on this forum so haven’t been able to take the time to learn to read CTs thoroughly. We REALLY APPRECIATE IT when our members who are knowledgeable in this arena step forward to help. Thank you again. 
2 Likes
I’m happy to “help” when I can @Isaiah_40_31. Whether or not any of these items are correct I think a general practitioner when faced with these concerns would have to consult a radiologist for an answer which will prompt another look into things in the very least.
Anywho, you and @jules do amazing work. This forum is far superior to anything else out there!
2 Likes
Thank you, @boogs99. We’re really happy to be here!
I think any observation of things that don’t seem normal is worth noting & following up on even if they’re later dismissed as benign. Thank you for being observant.
1 Like
This is brilliant guys
I am sure you’ve found alot of issues here as all are in line with my symptoms and the compression I get. When I drive too much I feel like I’m having a mini stroke and I get incredible brain and face pressure and have lost some vision temporarily at times. I’ve stopped moving my neck as much as possible as it makes my symptoms so much worse.
Vertebral Artery Compression/hyloid compression is definitely looking promising as something here. In fact I’m certain compression is my issues here. The cause and fix will be more difficult to obtain I imagine. Someone mentioned I had what looked like fused bones on the vertebra which I had no idea about.
The nerves being compressed makes so much sense too I have so many symptoms I haven’t even mentioned that can be linked to this.
I’m currently uploading an MRI scan to taken months ago to the dicom library may take a few hours. I will post link when done. https://www.dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.3.20231201134230316.16833353714926348347
Where do I go from here to get help or diagnosis and get these looked at as it seems so difficult to get help
I really appreciate everything so far
2 Likes
@sprinter, I think images like this may confirm some brainstem compression from the vertebral artery…
This MRI also shows an artery in contact with your vestibular nerve…
As far as next steps for getting help, I would suggest getting a second opinion on your imaging and ask specifically about everything discussed here. Copy the images @CJsBattle and myself have posted and ask specifically if there is anything that could be related to your symptoms. There are private radiology companies online, that allow you to upload your imaging and will give a report quickly, if you don’t mind paying. You could potentially have these concerns addressed over the weekend.
I would also consider asking for a copy of the existing radiology reports. I wonder if a radiologist hasn’t already remarked on some of these things but no one read the report…
3 Likes
A neurologist would be a good bet to look for cranial nerve compression at the skull base. A detailed MRI could show that and possibly Microvascular decompression surgery would help, I don’t know if I’m right with vertebral artery compression…You could look up local doctors for a neurosurgeon?
Mr Hughes in London will do a hyoid bone resection so he might be good to get a referral to? Mr Axon doesn’t do hyoid surgery so no point in waiting on his list!
If you’re able to pay, otherwise some members have had all their scans reviewed by Kjetil Larsen, a link is at the end of the Doctors List, who has given them a diagnosis & info.
3 Likes
Just to help clarify what I think is going on here, I coloured in the vertebral artery, which pressing upon the brainstem…
@boogs99 what is your advice here you’ve been absolutely brilliant.
I know your right because of my horrendous issues and disabilities I’m living with since this all started and I’ve been trying to get help but it’s a complex issue it seems.
Would AnE be worth a shot with the current information you’ve found as a quick Google search of brainstem compression will tell you how serious this can be.
Well I’m not a doctor and I’m not familiar with the UK health care system, but it might be worth a visit for sure.
While the compression itself might just cause symptoms the d-dimer results could be urgent and there seems to a correlation? Or maybe the compression is urgent too, I really don’t know.
I would bring a copy of your imaging and these images too, cause if you walk into A+e and tell them despite your CT and MRI reports indicating nothing, some guy on the internet diagnosed you, it will be a hard sell…
1 Like
Totally agree unfortunately this has been a hard sell for anyone else that isn’t me experiencing this since it started, and then nothing obvious was found immediately or even after further investigation. I was a fairly fit healthy 42 year old guy who was very active before this hit me and had no idea what was happening to me.
Not sure how long someone can have a clot for or if that’s even possible or if this is all just compression related? Can compression alone potentially trigger a positive d-dimer?
When in AnE and they suspected a clot they administered a big injection of thinners and for 20 or so mins I felt amazing closest to normal I’d felt in ages.
1 Like
I obviously know very little about your medical details other than you have significant complaints.
If your radiology report did not report any concern about weird vertebral arteries pressing into your brainstem, then in my unprofessional opinion this is your biggest hurdle to overcome.
I’m sure your aware that it is the radiologists that look at the images and then write a report. It is only after they comment on something abnormal will other specialists start looking at the images for themselves (generally speaking). So while you are complaining, the doctor simply looks at a report, and sees that the radiologist declared everything is normal, hence the anxiety accusations.
All this being said, I would like to think an AnE doctor would be able to recognize a compressed brainstem when shown.
In the brief bit of reading I did, all I know is there is an association with atherosclerosis and artery loops. Not sure why. Not sure it has anything to do with compression of the brainstem.
1 Like
There are definitely some hurdles to overcome, but with this information found on here it could potentially be the first positive step to unwrapping what’s happening.
One of my MRI images
Is this circled in red a normal finding just looks a bit odd as I came across it
My point was you need a 2nd opinion from a radiologist or someone that can read imaging for themselves as opposed to just reading a radiology report.
I believe you have circled your carotids.
2 Likes
Agreed so it’s A+E armed with all the info and images supplied on this thread or alternatively find a professional to report on the scan for a second opinion.
Assuming we can find someone and get this done fairly quickly as I am not sure if it’s the same in the UK as in the US and as readily available. I obviously now have my doubts obtaining a second opinion will find this and report on it correctly.
1 Like