I have pretty the same view of a hugely delated vein on my MRI! Later on the CT angiogram it turned out to be a condylar emissary vein, which is 1 mm in diameter when normal.
Have you had treatment yet? What did they say about the vein? Are you in the UK?
Honestly it’s bad enough even if I had good drs but I feel like I’ve been abused and kicked whilst I am down.
I can’t get anyone who is willing to review my scans (as in neuro radiologist) I will have to wait for dr Timothy and my nhs neurologist now.
How did we all get here and thank god for sites like this or id probably be sectioned now as starting to think I’m going crazy 
No, I didn’t get treatment yet. And I’m not in the UK, I’m im Belarus… But I am determined to come to the UK to Dr. Timothy or Dr. Axon for the surgery… Or to other doctor, am also new here, have just started to search for the right surgeon…
About the vein, they told me nothing. But it was the clue that helped me figure out the ES and the IJV compression myself… And then prove it to doctors)
If you are intetested, today I have posted my story and all the details on my diagnosis here, its at the end of the thread
I believe that we both will find the way out.
Sending you my best vibes and asking Universe to give you the help you need now 
I’ve actually started to figure stuff out myself like I must have compression somewhere along the superior vena cava as I’m getting oedema in my head and neck when I lean forward. Also massive bulging head veins and I cannot stand the pressure. I’ve also noticed a bulge in my subclavian vein under my collarbone.
I will not even bother mentioning this to drs as they already think I’m crazy but I cannot imagine physical signs as well as my symptoms.
Everyone on these forums seems to have EDS. My youngest child is diagnosed with this and I’m guessing he got it off someone so starting to think it’s me.
I’ve been so fit and healthy all my life then hit 44 and bang I’m invisibly disabled. What in the world is going on! I will never trust another dr again as long as I live that’s for sure.
Hope you feel better soon
Thank you!
On bulging veins on head and neck, I can’t relate, to be honest, didn’t notice it by myself.
On sudden disability, my guess is, that Covid may also have played the role… My symptoms aggravated after the pandemic started…
And on EDS, yes, indeed, it seems like ES, CCI and EDS are somehow strongly related…
We have other members who were around your age who became symptomatic with similar symptoms yours & were diagnosed w/ hEDS & VES. Since it’s hereditary, it wouldn’t be surprising to find that you have it since your son does.
We do have quite a number of members who do not have EDS including me, but it does seem there is a connection between EDS, CCI & VES.
I think any form of hyper mobility condition, particularly one like hEDS makes sense why it correlates with Eagle’s. I guess laxity in a joint and use of said joint would likely end up with calcification. For Eagle’s Syndrome makes sense that calcification of the stylohyoid ligament due to ligament laxity could occur.
Equally I saw a youtube video a while ago suggesting that for people who have EDS and CCI, their skull and therefore C1 translates forward, pushing it into the ‘Eagle’ area aka the IJV, the carotid artery and vagus nerve. The presenter in the video was making the argument thats why POTS and other dysautonomias are more prevalent in EDS/ hypermobile patients.
Yes! The human body tends to lay down calcium in areas it thinks need to be reinforced such as where a ligament is lax. That happens in other soft tissues as well i.e. tendons, muscle & even small bones like the styloids. Unfortunately, the calcifications then “tether” the soft tissues so they can’t move freely to do their jobs. That in turn results in other soft tissues being recruited to do jobs they weren’t meant to do which in turn causes pain & other disabling symptoms. It’s a bad chain reaction!
Makes you think our bodies are against us 
. In the preservation of life due to soft tissue weakness, it puts us through awful symptoms.
Yes that drs don’t seem to know exist 
I agree with both of you! I learned that from an orthopedic Pilates training program I took (i.e. Pilates as therapy). My instructor didn’t have any medical training but she had a comprehensive knowledge of the human body & how it works. Maybe she could educate some of the doctors out there!!
Just a process of finding the people that can help. Sadly in the UK system we are not equipped well to a) diagnose rate and complex problems and b) get these rare cases to the right people because of the centralised system. Of course in the past when the NHS was functioning this system works fantastically for things that can be picked up easily - free at the point of access and extremely high quality care. But it leaves no pathway for the needles in a large haystack, but these needles are real people, with feelings, who are desperate for help.
@kel34ban hope you manage to get some help from Mr Timothy, I’m currently trying to get an appointment with him too!
I have my ctv booked for the 3rd jan but Dr Timothy will not be looking at it until my appointment in March I’m hoping if anything serious is seen they will let me know asap.
Dr Timothy requires a brain and neck mri from within the last year and also a ctv head and neck. I already have the mri but the ctv is £1300 and his initial appointment £400 At least if you have recent imaging he will use it
I had an MRV booked but I’m going to cancel that now as having the ctv.
Are you in the UK? What are your symptoms? Have any other drs been helpful?
If the radiologist who reads the CTV notices something urgent its their duty to make sure you know about it ASAP.
Yes I was quoted the same for the CTV and appointment, all rather expensive 
.
Yes I’m in the UK, my symptoms are persistent frontal headache and a host of others. Can read here on my journey https://gurnanipratik.wordpress.com/2023/12/26/10/
I went to see Dr Iain Smith, a chiropractor in Newport near Telford who was very helpful.
@LimeZest wow your story is so like mine even down to the promotion (you write it much better than me) I feel like I have lost much of my cognitive function and I struggle with things I once did as standard.
I am slow now which is difficult for me as I have adhd and have been 100 miles an hour my whole life. (The adhd and Autism have been used against me and no dr gets passed that) discrimination! I was a very successful, hardworking woman and my adhd and autism drove that.
My autism will not let a dr slap an incorrect diagnosis like chronic daily headache on me just for the sake of it. I’ll probably get a new one from ENT next week with the word IDIOPATHIC thrown in. They seem to use idiopathic without first ruling out or investigating a cause.
I actually thought I was losing it mentally for the last 12 months as I had so much pressure in my head and people telling me I do too much. I even attended therapy private and nhs cbt who discharged me because she did not believe it was a psychological issue and I needed further medical investigation for my symptoms, which is all I cried about in the sessions.
I seem to have deteriorated massively since my stroke episode and cannot work or function at all. I too have all the heart symptoms and went from athletic fit to can hardly walk or function and drs think I’ve lost the plot 
I tried a chiropractor and it might be coincidence but a week after that is when I collapsed so I’m reluctant to try that again. I’m glad it helps you though and you are able to continue working. I think I tried everything wondering what the hell was happening to my body.
I will update on here what Mr Timothy says in March as it may help someone else. I go on 3rd for my ctv so if anything shows I should hear back asap.
Hope you have a healthy New Year and 2024 we are fixed 
@kel34ban really sorry to hear how much you are struggling so much. I agree doctors are not always helpful and do slap labels on people.
One thing I have really tried to do is to keep in touch with my GP and try not to get too emotional in the appointments which isn’t always easy but I think has kept me from labelled as anxiety.
The chiropractor I have seen isn’t a regular one, he specialises in conditions of the craniocervical conjunction and doesn’t believe in any neck cracking etc.
Have you tried looking into coronary artery dissection if you collapsed after a high velocity adjustment? Apparently people with Eagles are more at risk as the styloid can tear the coronary artery leading to a stroke?
Wishing you well
I went down a similar path and eventually was diagnosed and treated for IJV stenosis. Your symptoms are worse, so I can only imagine how bad you feel everyday. You learn what specialists you need to see and what was a waste of time through trial and error. So I sympathize greatly with those in a similar position and try to provide help when I feel like I can.
I have 10+ years looking at MRIs and CTs for the TMJ surgeon I work with. It was just a matter of understanding what causes IIH to know what to look for on the MRI scans. Dr. Patsalides has some very informative videos that breakdown symptoms and have some good images Videos | Athos Patsalides, M.D. Interventional Neuroradiologist Idiopathic Intracranial Hypertension & Pulsatile Tinnitus, New York.
The CTV is good at looking for bone and blood vessels at the same time, so it’s great for diagnosing IJV stenosis. But any other soft tissue will not show in this type of scan.
The MRV will be better to diagnosis if that area I highlighted is a tumor or not and if it is a problem for you transverse sinus.
Since you already have everything scheduled with Dr. Timothy and need the CTV, lets see what it shows. The MRV would be nice, but may not be necessary for Dr. Timothy to make his recommendation.
Hi @GCD and thank you again.
I have not cancelled the MRV yet as it’s not until the 14/1/24. I was hoping I wouldn’t need it as it’s another £700 I am however so unwell that I will still have it if you think it will be useful.
Dr Timothy and his wife (secretary) are on leave until the 8/1/24. I will drop them a message and ask if I should still have it. I’m hoping if something shows on the ctv I will be contacted sooner anyway.
The way I feel something has got to show. The scans are only as good as the people reading them as we know
What treatment did you have and do you feel better?
I had my left styloid removed and the C1 transverse process shaved. My dominant IJV was on the left side, so that was the side operated on.
My main complaint was a consistent head pressure in my forehead that could lead to headaches. Later I developed strain behind the eyes and a slow decline in my ability to process. It progressed to the point where I could not talk to people for more than a couple minutes without a feeling of almost passing out.
Most of those issues have fully resolved or gotten to the point that they don’t affect my day to day life. It was a long recovery for me with a lot of ups and downs. I still have a fair amount of brain fog and that may be permanent, but at least I don’t feel I like I’m going to die just talking to someone at work.
All that to say that, if you can find the source of what is causing your vascular issues you should be able to recover to stable point as well.
