Just had a dynamic angiogram and venogram and was told no compression and venous pressures are fine. I don’t think I had my head in the proper position maybe because I am never laying flat on my back like they had me laying, turning my head where I feel the pull/stretch on the blood vessels. Meeting with Dr. Lawton tomorrow and afraid they aren’t going to be able to help now.
I have a whole bunch of venous collaterals on the left side towards my face on my first angiogram - is it possible that the collateral circulation is so substantial that I have normal pressure in the jugular vein? Or my head was just not in the aggravating position it needed to be in? Or do I give up here and start looking outside of eagles syndrome?
Long time ago, back in 2020, I was told by one very respected ENT surgeon from the UK (and most of us know his name) that compressed IJVs typically don’t cause much trouble if there is good collateral flow. More precise, he told me that compressed IJVs might cause problems if there is insufficient collateral flow.
@vdm provided one doctor’s opinion which may not be accurate for every individual.
It doesn’t sound to me like your angio & venograms were done dynamically i.e. trying to recreate symptoms while imaging. This means head/neck movement into the positions you know stir up symptoms. Having them done w/ your head in neutral is static not dynamic.
I would definitely discuss with Dr. Lawton that you feel the tests were not dynamic but static. The results of today’s tests, especially the way the testing was done, seem meaningless to me.
Ask Dr. Lawton what a proper dynamic test “looks like”. Because he seems interested in your case, I hope he’ll have you pursue additional testing which may provide more meaningful results. He can see there’s something very wrong just by looking at your CT scans. Pursue that angle if he seems reluctant to continue helping you. This is where self advocacy is critical. Fight for yourself & the care you need. Don’t tuck tail & run!! You can & will find the right doctor to help you!!
That was a dead end and recommended against surgery, said we can knock Eagle’s syndrome off the list at this point and my jugular vein is large. Suggested a headache clinic after I mentioned palpating the back of my throat on the symptomatic side causes a severe migraine-like headache - been there done that.
I asked about my head not being in a normal/correct position (when am I ever laying down with my neck slightly extended and fully rotated? Never) but didn’t think that was likely.
I have a suspicion that the pressure measurement in the vein being normal is actually from all of the collateral vessels that have formed in my face (where most of my symptoms are) and feed into the lower portion of the vein of which I can see on my ct scan but I guess I won’t know for sure where they measured from until I get the images of the venogram.
Dr. Lawton recommended against surgery? If so, that’s curious after he took such an interest in your scans. I’m sorry if that’s the case.
Please forgive my forgetfulness, but have you posted other CT images on this forum for comment? If not, it would be worthwhile.
As I said, please don’t give up trying to find a proper diagnosis & solution. Even if Dr. Lawton says no ES, another surgeon might see your situation differently. We’re here to encourage you & support you till you find the answer & remedy to your pain/symptoms.
This is turning into a wonderful lesson for you as a med student. You’ll be a better & more compassionate doctor because of what you’re going through.
My venogram came back normal, and Dr. Hepworth recommended surgery anyway. I’m having it in five days. Sometimes I wonder why I’m doing it, but I trust him. I’m wondering the same – if it was “normal” because of my collaterals.
Where did you get your venogram done? I had one done at Barrow and they wouldn’t do the flexion or extension positions like I requested. Previously I had one done at Banner University in Phoenix, and Dr. Sunenshine there took great pains to include all sorts of combinations of positions - head in neutral (looking straight ahead), turned left, turned right, and flexion and extension combined with neutral, left and right. It took a long time, but it was worth it. My compression showed up the most with flexion.
I had the venogram done at Barrow. Quite frankly I was disappointed with how quickly the venogram went. I was expecting it to be thorough with multiple positions as you said, especially when from what I have read, neck flexion is often the culprit. In no time during the day is my head, neck, and upper back in the posture that I rotated my head in for the venogram. I have an consultation with another neuro IR in September but who knows how long of a wait to actually have another test.
Again, I’m sorry for your frustrating experience! I hope your Sept. appt goes much better.
I was actually in Phoenix this past week, & as we were driving on the freeway, we passed Barrow. I was excited to see where that institution is since it’s been noted on here a few times.
After I get my venogram images I will likely ask about it. Other possibility I thought of - I have developed POTS which is commonly associated with a CSF leak.
Eagle syndrome → Elevated venous pressure and clot → elevated intracranial pressure + collateral formation → CSF leak and collaterals lower the pressure.
I have a hard time believing the collateral circulation on my angiogram, which I believe is the pterygoid plexus, has nothing to do with my symptoms = pulsating eye pain, pulsatile tinnitus on that side increases with jaw movement (the plexus is 'pumped" by the lateral pterygoid muscle that moves your jaw), spasms when yawning, I can literally see the blood move through my cheek if I clench my jaw and then release (its bizarre).
Yea it was a bit confusing for me as I was expecting the venogram to lead to the solution. Unfortunately I am not very articulate when it comes to describing by pain/symptoms (getting dumber by the day) and the conversation ends up focusing on my trigeminal nerve pain/craniotomy, which never received a formal diagnosis (trigeminal neuropathic pain of unknown etiology). That is a good idea, I will make a post and would be interested in opinions, I will likely try and write myself up in a case report whenever this gets figured out.
I am very thankful for the support, I hesitated posting on this forum because the trigeminal neuralgia/facial pain group on facebook can be quite toxic. So thank you!
Hopefully I can get the images from Barrow sooner rather than later. If you look at the jugular vein (green) it is bowstringed on the C1 transverse process, and the common facial vein (orange) is draining just as much if not more blood into the jugular, plus the other 2 veins draining into it (purple, cyan). So I wonder if the catheter was below the connection to the other veins, its going to indicate there is lots of blood flow in the jugular when in fact it is coming from elsewhere.
Your IJV definitely looks pinched between your styloid & C-1. Curious that Dr. Lawton didn’t take that seriously. You may end up needing to see Dr. Hackman in NC or Dr. Hepworth in Denver to be taken seriously about this. Dr. Lawton has proven to be inconsistent with whom he’s willing to treat.
Are you in a position to get a second opinion from another doctor who knows about vascular ES?
We also have a facial pain group under the Ben’s Friends umbrella. You may find it more encouraging than the FB group. For some reason, the FB support groups tend to be more downer & less supportive than the BF groups. https://www.livingwithfacialpain.org/
