Recent diagnosis in Tasmania australia

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Hi everyone. I’m from Tasmania, Australia. I’m really grateful to have found this group because living with Eagle syndrome can feel quite isolating, and I’m looking forward to learning from others who understand.

My journey has been a little unusual. Five years ago I had a haemorrhagic stroke, and after years of searching for answers we’ve discovered that I have severe compression of my right internal jugular vein by my styloid process and C1. I also don’t have a left internal jugular vein :thinking: so there’s no vein to compensate for the reduced blood flow out of my brain.

I recently travelled to Hobart to see my neurologist, Dr Caroline Airey, and also met with a specialist brain and migraine physiotherapist who is now part of my care team. I came away with practical advice on managing my condition, including breathing exercises, ways to reduce muscle guarding around my neck, and clear guidelines for my healthcare team. I’ve also learnt why I need to keep my neck in a neutral position, avoid sudden neck movements, and why sitting or standing for long periods makes me feel so unwell.

I have been deteriorating over the last 5 years, losing function and mobility rather than gaining and am mostly bed-bound and house bound.

At this stage, my medical team have decided to delay surgery for 2–3 years. Because of my previous stroke and having only one internal jugular vein, the surgery carries significant risks, including another stroke. If it were successful, it could be life-changing, but for now we’re focusing on managing my health as safely as possible. Risk of another stroke before, during and after stroke is real.

Despite everything, I feel incredibly lucky to still be here. I often say that, in the world of miracles, I’m one of them. Every day I’m trying to build the best quality of life I can within the limits of my body. Any tips welcome. :grinning_face:

CT images showing the compression of my right internal jugular vein by the styloid process and missing left ijv.

I’m looking forward to getting to know everyone, hearing your experiences, and learning from this community.

j9

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Hi and welcome!
I’m so sorry that you’ve had a stroke and that your situation is so complicated! Do you know exactly the cause of the stoke- did the high intracranial pressure from the compressed IJV cause a bleed elsewhere? Obviously we’re not doctors on here, but as long as the IJV is still compressed, there will still be increased intracranial pressure which might carry the risk of another bleed? Members have often found that anti-coagulants/ blood thinners can ease some of the symptoms from vascular ES, but I guess if you’ve had a haemorrhagic stroke that might not be a good idea?
Your attitude is great, you sound very strong and brave!
Other tips for helping with VES briefly are to try sleeping propped up to help with the head pressure, icing or cold showers can help, keeping an eye on your head position and correcting any forward head posture, avoiding looking down so keeping screens etc at eye level, and there’s lots of info in this discussion:
Coping mechanisms for jugular compression - General - Living with Eagle
There are exercises which can help with the forward head posture in this discussion:
List of my favourite resources on YouTube to learn anatomy - General - Living with Eagle
but obviously you’ll need to be careful and might want to run any suggestions past your physio… If you’re able to share the info you have about muscle guarding that would be interesting as lots of us have issues with that!
Some members have also taken supplements to help with the brain fog, but you would probably want to check that out with your doctor- creatine, Trimetazidine & Citicoline have been mentioned.
@BraveKat in NZ has mentioned about a treatment called Neubie performed by physios to help with muscle tension, it’s fairly new so might not be available everywhere…
There’s more detailed info in this section:
ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I hope some of this is helpful, sending you hugs :hugs:

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@Janine1972 - Welcome to our forum. I’m sorry for how complicated your case is, but I also agree w/ @Jules that if the hemorrhagic stroke was caused by high intracranial pressure vs an injury to or blood clot in your internal carotid artery, leaving the pressure as high as it is due to your IJV compression doesn’t make a lot of sense. Your body has likely developed significant collateral veins at the back of your head near the skull base to assist the IJV in draining blood since the blood outflow from your brain is so low. These can cause occipital pain & pressure. Is that something you experience?

I also noticed you have some significant sections of calcified stylohyoid ligament on the right side besides the thick bit of styloid that can be seen in your imaging. The one just below your styloid looks like it could also be contributing to the IJV compression.

I hope the therapy & medications that have been recommended to you help reduce your symptoms so you can be more functional. :hugs:

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