2 Years of Bilateral Jugular Vein Compression - PLEASE Help

[nemo]

Hello everyone,

I’m a 20-year-old guy, and for the past two years, my life has changed completely due to a little known health issue. It all started in the summer of 2024, when I was working at a restaurant with an extremely heavy workload: long hours, constant stress, physical exertion, poor posture, excessive caffeine, a poor diet, and little rest.

At first, I experienced pain in my trapezius muscles and the cervical region, which progressed to dizziness, headaches, and, over time, sleep problems, low energy, and digestive issues.

After consulting with more than 30 specialists including physical therapists, orthopedic surgeons, neurologists, and neurosurgeons I had to do my own research until I discovered that I have bilateral compression of the internal jugular veins by the transverse processes of C1, with normal styloids.

My goal is to have surgery covered by my health insurance in Spain, but since this is an unknown condition, the neurosurgeon evaluating me despite being a renowned specialist does not believe this compression explains my symptoms, even though I have provided him with studies and articles supporting the connection.

I need help convincing the neurosurgeon that this problem is the cause of my symptoms.

Some of the symptoms are:

• Constant pressure and a sensation of deep congestion in the suboccipital region, radiating to the ears, eyes, face, head, palate, back of the mouth, and neck.
• Perception of the heartbeat in the head, ear, and neck, accompanied by an unbearable sensation of pressure.
• A sensation of swelling and tension on one entire side, from the ear to the collarbone, accompanied by deep pain in the area between the jaw and the ear. (Otological cause ruled out.)
• Lack of energy: I wake up tired even after sleeping for 15 hours.
• Tinnitus, etc.

Images findings:

• Bilateral compression of the internal jugular veins by the transverse processes of C1 (from 13x13 mm to 4x14 mm).
• More compressions to the veins below.
• Dilation of the jugular bulbs above the compression sites.
• Collateral circulation, etc.

I need to demonstrate that this has hemodynamic implications and is the cause of my symptoms.

Thank you for your time.

[Jules]

That’s just so frustrating for you- you have clear IJV compression between the styloids and the C1 processes, and symptoms of Vascular ES!
We do usually suggest that members take one or 2 research papers with them to show doctors- it sounds like you’ve done this already though! There are also a couple of videos done by the VES doctors, whether that’s worth a try as well, maybe you could email them to him/ Here’s links:
Dr Costantino IJV compression and surgery - Symptoms and Treatments / Doctor Information - Living with Eagle
A Review Of IJV Compression by Dr Aghayev - General / Research Papers - Living with Eagle
I don’t know what else you can do, unless you perhaps look at getting a diagnosis from elsewhere, and take a report back to him? Quite a few members have had an online consultation from Dr Aghayev, it hopefully wouldn’t cost too much?
Dr. Kamran Aghayev - https://kamranaghayev.com
Link to set up a consult: Get Expert Neurosurgeon Consultation & Second Opinion Online
Others have also had online consults with Mr Axon in the UK, although I think this would cost a bit more:
Mr Patrick Axon - ENT Surgeon (Ear, Nose & Throat) | Ear, Nose & Throat Surgery | Spire Cambridge Lea Hospital

[Isaiah_40_31]

I’m so sorry your neurosurgeon is ignorant of the symptoms IJV compression can cause, @nemo. You have done a good job of advocating for yourself by clearly articulating your symptoms & trying to educate your neurosurgeon. I can only imagine how frustrated you must be!

Have you considered seeing a vascular surgeon who might better know the symptoms of IJV compression & could convince the neurosurgeon of your need for surgery? I think the neurosurgeon would be better qualified to do the surgery because of the location of the problem & all nerves in the area. With your trapezius pain, it also sounds like you may have irritation of your spinal accessory nerve which can sometimes contribute to IJV compression.

I hope your neurosurgeon will watch the videos @Jules sent you links for as they will be good evidence that what you’re telling him about the cause of your symptoms is correct.