Vascular Eagles?

[DogLover]

Hi all.
I’m hoping someone can throw some light on some of my symptoms.
Not sure quite when all this started for me but it’s certainly years ago.
I’ll try and be brief.
Always had back/hip/shoulder pain.
2012 started with popping in ears and jaw locking.
2014 years ago sudden onset of very severe right sided post nasal drip - gush would be more accurate. This subsided but is a constant feature and comes and goes in severity - still can’t sleep on my back as I choke. Sometimes get clear liquid from nose and metallic taste. Asked ENT about CSF but advised very unlikely.
2015 Chest pain like a band and heart palpitations. Consultant checked heart and all clear. Told costochondritis

Over last 10 years severe positional headache (better standing & these have stopped now,) facial (malar) flushing, breathlessness, sudden very high BP, sudden high heart rate, pain in jaw when eating on right, nausea, pain in neck, difficulty swallowing and feeling of lump in throat, temperature changes, pressure in head, tinnitus, objective pulsatile tinnitus, vision problems.
More recently facial spasm, Horner syndrome, twitching, pain at back of head (all on right).
All brought to a head (oops) last year with sudden onset of severe vertigo after leaning over dog for hug. Since then vertigo has never really gone plus dizziness and terrible brain fog. I told my husband it’s like being constantly drunk without the good bits! Also symptoms which are harder to explain with Eagles unless I have vascular. These include tremor, speech problems, memory & cognitive issues, numbness and tingling in arms and legs and fine motor skills, random pains in hands and feet, all of which come and go (very dependent on head position).
My Eagles diagnosis was of mild calcification after a Cone Beam CT scan of my TMJ, so I had written it off but when I saw left sided image which showed some calcifcation of the stylahoid ligament too I thought it was worth pursuing. I have an appointment to see Mr Axon in UK on Friday but I want to make sure I’m up to speed with vascular symptoms and ask what you guys have experienced. (think this includes you @Jules). Is this enough to cause vascular from your experience or am I wasting Mr Axon’s time. Left side -

Right side -

Also CT scan identified two other calcified bits which I thought might be calcified arteries as found a similar example on line. Obviously not looking for diagnosis but is it worth me mentioning it to Mr Axon or will he think I’m potty? Left with calcified bits showing -

Image of calcified carotid artery at C3/C4 - mine are at C2/C3 and a bit smaller. Is this something for an Eagle consultant or will it just annoy them?

Just for info since vertigo episode have had Brain MRI (said not MS - gave me tablets for migraine), CT with angiography to check for Thoracic Outlet Syndrome (haven’t seen scan) - my symptoms exacerbated by looking right and left so this may have missed something I suppose. Blood test for lymes, thyroid and lupus. TMJ consultant thinks I have hypermobility. Has administered steroid injections on right side of neck when styloid process is.
Thank you so much in advance. Hoping I can find my way out of this nightmare!

[Jules]

It does sound (in my amateur opinion!0 like it could have been a CSF leak you head, & some of your symptoms sound similar to mine when I had bilateral jugular compression & Intracranial Hypertension symptoms. (the feeling drunk, vertigo, brain fog, head pressure & pulsatile tinnitus).
Personally I’d leave looking at the CT to Mr Axon- he may want to do a CT with contrast, he usually likes them done his way at Addenbrooks. You could ask about calcified ligaments though; I’m not sure if he usually removes those, mine weren’t calcified, just long styloids. If that’s your styloid in the 2nd image, that’s the widest one I’ve ever seen I think! I’d mention the pulsatile tinnitus as one of your symptoms as well though; he’s done research into this so is very interested in it.
He does seem to have changed his protocol since I saw him though, & has to refer patients to avascular consultant too, & might mean more testing & waiting I’m afraid.
Did the steroid injections help with any symptoms?
I hope this helps, let us know how you get on!

[Isaiah_40_31]

I totally agree with Jules. Many of your symptoms sound like you have jugular compression. You have enough calcification of your stylohyoid ligament to cause problems for sure & your right styloid is just downright evil looking (reminds me of a snake!). I’ve also never seen one so thick. Thickness alone can cause problems but yours is thick & a bit long.

Your temperature disregulation, heart palpitations, blood pressure & breathing issues can all be caused by your vagus nerve being irritated by the calcifications in your neck on both sides. Here’s a link to a great post Jules wrote about symptoms & their causes:

ES Information: Common Symptoms And Possible Explanations For Them

ES Information: Common Symptoms And Possible Explanations For Their Causes: Disclaimer: These answers to common questions were put together for new members to gain a head start in finding information about Eagle Syndrome; to give you confidence to discuss issues with your medical team and to encourage you to research issues further for yourselves. It was compiled by a volunteer Moderator, who does not claim to be a medical professional, merely an informed observer and patient! The sources used…

and another with general info about ES:

ES Information: Background, Anatomy, Styloid Length, Angulation, Classic and Vascular

Eagle Syndrome Information: Background- Including Anatomy, Classic or Vascular?, Length Vs Angulation: Disclaimer: These answers to common questions were put together for new members to gain a head start in finding information about Eagle Syndrome; to give you confidence to discuss issues with your medical team and to encourage you to research issues further for yourselves. It was compiled by a volunteer Moderator, who does not claim to be a medical professional, merely an informed observer and…

Jules has given you good advice regarding Mr. Axon. I’m glad your appointment is coming up soon.

[adriene61]

I had a csf leak as well as Eagles. Get a sterile container and collect the fluid when it happens and that is the easiest way to tell if it is a CSF leak or not. Otherwise you will need to go to a CSF leak center. I went to the duke CSF leak center. I would also get an ENT to refer you to an experienced head neck surgeon in Eagles Syndrome to rule Eagles out. Best of luck in your journey to recovery!

[Jules]

How did your appt go with Mr Axon? Is he able to help you?

[DogLover]

Hi again @Jules, @adriene61 @Isaiah_40_31, So sorry for not replying when you were so helpful. I’ve been really struggling with my hands typing among other symptoms and other things (new rescue puppies having emergency ops, family Covid, food poisoning, kid’s partner breakups etc - normal life for everyone basically),

I went to see Dr Axon who said he didn’t think I had Eagles but probably Jugular Vein Stenosis from the transverse process (atlas bone). I felt very disheartened afterwards as I had come across this before but assumed it wasn’t likely as it would have been spotted on my previous CT angiogram - wrong!

He referred me for a CT Venogram which showed that he was correct. I have JV stenosis, possible Intracranial Hypertension and probable occult CSF leak. I’m waiting for a lumbar puncture to exclude serious Intracranial Hypertension and then should get balloon angioplasty. Yay! Cannot wait. As you will know Jules, Jugular Vein Stenosis can cause all sorts of symptoms, for me the worst of which are terrible brain fog and cognitive issues (memory, transposing words etc), vertigo, numbness in hands, arms and legs, insomnia, tremor, stumbling gait and balance issues amongst others. These sound extreme but there are various medical papers published more recently demonstrating this if anyone is interested, many in China who seem to be ahead on this condition. Many of the symptoms are alarming and similar to conditions including Multiple Sclerosis which my father and grandmother were diagnosed with but that’s a discussion for another time. My scans show no lesions thank goodness.

The jugular vein can be impinged or compressed by the styloid process (Vascular Eagles) and/or transverse process but Dr Axon doesn’t think my styloid is involved, albeit pressing on the JV a little.

I’m just posting all this in case it helps anyone else who has some symptoms of Eagle (I do have pain in jaw up to ear, discomfort in throat, problems swallowing), in particular vascular, but have been told they don’t have Eagle Syndrome. I’ve seem some posts from people previously struggling with this.

Just want to give an alternative for people who have run out of options. My advice would be get copies of your scans (you can pay for a second radiologist opinion I believe online if you can afford it). Obviously you need a professional to read your scans properly, but it may at least help suggest which questions to ask, as in my experience some of these more obscure conditions are missed or not even known about. It’s your legal right in the UK at least, under the Freedom of Information Act Freedom of Information - NHS Digital to get a copy so don’t be put off although it can be a struggle. I’ll put on some images of my scans as I know that helped me on this site, just in case it gives people some guidance as to what to pursue next. If I’ve posted anything unsuitable moderators please let me know and I’ll edit. I used software called RadiAnt which is free for 30 days to get the 3D view of my CT which is very useful, but there are many others.

I probably won’t be on this site anymore as I don’t have Eagles but if anyone wants any advise on the issues I’ve mentioned happy to try and help. I’ve spent the last 18 months researching online desperately trying to find out what was wrong with me and I don’t know about you but I’ve felt pretty low at times and communities like this where the people are so knowledgeable and supportive make such a difference.

Please everyone don’t give up. Keep going through the doctor scepticism (felt like a hypochondriac), misdiagnoses (migraine for me - take meds!), missed diagnoses and friend’s comments (is it stress?), all whilst feeling dreadful. They all mean well.

Hope scan images might help even one of your readers and thanks again for this fantastic forum.

3d of CT Venogram

Axial view of CT

Coronal & Sagittal

MRI - more difficult to see

[Jules]

So sorry that you didn’t get the answer you wanted from Mr Axon…is he suggesting that the balloon angioplasty will help or might you need a resection of the atlas process? I’m glad for you that at least it’s not MS…
Thanks for the info about getting your CT copies under the NHS, that’s really helpful!
We appreciate that you’ve come back on to update us- sounds like you have a crazy busy life & feeling so ill on top…but you’re very welcome to come on here still for support & to keep us posted on how things go for you…sending you a big hug

[Isaiah_40_31]

Thank you for your wonderful labeled pictures. I’m going to download them to keep as a reference for when others send images that I feel clueless to understand. I think they will be very helpful for me going forward!

I’m also very sorry for what you’ve had to go through to get this diagnosis but am hopeful that the next steps of your journey will help relieve your symptoms. If you continue to have the jaw, ear & swallowing issues after you’re IJV compression has been treated, it may still be your styloid is causing a problem which would be worth addressing at a much later date. Not suggesting that’s the case, just want you to keep your mind open to that possibility if those symptoms get worse.

Friends & family are our allies, but don’t always understand so we do need to learn to smile & nod when they give us advice on subjects about which they have no experience. It sounds like you’re a pro at that.

Good for you for doing puppy rescue. We are dog lovers in our family. My sister just spent 2 years working with a disabled puppy/dog which had to be put down about 2 months ago because his disability was neurological, & he lost the ability to swallow. Her heart is still broken. I applaud all who are “dog moms” or “dads”. It can be a tremendous amount of work depending on the dog, healthy or ill.

I hope your puppies heal quickly from surgery & your family stays healthy & happy! And, as Jules suggested, please do come back if you need support going forward whether for ES or not.

[DogLover]

Hi again @Jules and @Isaiah_40_31. Finally back online and just wanted to say thankyou for such kind messages from you both; it really helped me when I was feeling down just to get such a supportive response from people I don’t know.

I’m finally booked in for lumbar puncture which Mr Axon wants me to have before balloon angioplasty so getting somewhere at last.

I’m definitely think it’s to do with my styloid process/ligaments @Isaiah_40_31 too, maybe including the stylomandibular (Ernest syndrome) as well as the stylohyoid as I’ve more recently got a lot of throat discomfort at the front and sides and strangely I’ve found that the only thing that alleviates my symptoms is a jaw support. I can only think this is perhaps supporting my hyoid bone and relieving strain on the ligaments.

I also have a perpetual sore throat on the right, sometimes really severe. Is this a common symptom?

Just wondered @jules how much better you felt after your treatment? Was the styloid process removed and did it alleviate your symptoms completely?

Thanks again for doing such a valuable role. All the best to you both and btw Luna the Bosnian rescue puppy made a full recovery thanks and is an absolute delight!

[Jules]

I had 2 surgeries with Mr Axon- the worst side was done first; the reduced the vascular symptoms massively, then the 2nd helped again. I have some nerve pain still but much better than it was.
I’m not sure that Mr Axon removes calcified ligaments, or just the styloids, so that’s something to think about later. I hope the lumbar puncture helps, don’t envy you that, let us know when you get a date for it. And good to have angioplasty in the future, hopefully that’ll help too.
Sore throat one side is a common symptom, yes.
Glad Luna is recovered!