I’m wondering how to tell the difference in symptoms between vascular and regular ES?
I’ve been told by fellow warriors I have IJV and carotid compression from my right styloid, but I’m not clear if my symptoms lean one way or the other and it dictates whether or not I wait to get another opinion from a vascular Eagle surgeon.
List of symptoms and what makes things better or worse (all of this is right sided only):
Ear pressure and eustchian tube issues (crackling and popping, no fluid present and no actual ear problems)
Autophonia
Bundle of extra muscle or growth that has formed behind mandible that pops out in when moving neck from side to side randomly, and in chin tucked postion that is extremely sharp and painful to palpate. Pressing near this sometimes makes ear pop. It will disappear and recede behind mandible, but it rubs on the bone causing the pain and popping sound. Can be palpated and pushed, sharp pain when palpated.
Constant pulling and pressure and pain in ear and neck that is aggravated when turning and looking up
Constantly feels like choking pressure in throat, like someone is pressing their thumb into my throat at all times right below mandible
Behind mandible near right below ear feels congested almost. Neck feels congested like a sinus infection minus the nose.
Humming tinnitus, sounds like a low car engine
Often times can also feel tingly and pulsey, like there are potentially nerves or something vascular involved
Palatal myoclonus in month and along mandible on the same area.
Pain when talking, laughing, eating/opening jaw, and sometimes swallowing etc in jaw but all behind mandible. Lack of ability to open jaw all the way because of this.
Swollen lymph node below ear and in neck in several places
When I move head forward, click sound in head in area of pain
Random bouts of nausea or gagging, doesn’t happen frequently
Worsens when:
Swallowing
Talking
Moving head at all
Sleeping on back (right side of make feels like it is being pulling back into face)
Certain neck stretches make pulling sensation MUCH worse
Pushing jaw from the other side
Pushing the tissue that bulges and pops- causes sharp pain and then dull lingering pain that doesn’t go away
Better when:
Not moving
Not swallowing
Sleeping (usually)
Morning right when I wake up. Everything gets worse throughout the day.
Laying on my right side
Getting sick (ironically makes the congestion in my neck feel symmetrical to my nose)
Chin ticked to chest, autophonia significantly decreases if not goes away
Laying down with pillow propping neck up
Based on the symptoms you’ve mentioned, it sounds to me like you do NOT have vascular ES. IJV compression causes intracranial hypertension (high bp w/in the brain/skull) which causes massive headaches, brain fog, visual changes, sometimes CSF leaks, pulsatile tinnitus & other nasty symptoms. ICA compression can also cause terrible headaches, but the other symptoms are more stroke-like i.e. TIAs, numbness/tingling on half the body or face, neck, intermittent loss of ability to speak clearly, vertigo/feeling faint or fainting, etc. That said, I do agree that it looks like you have a little IJV/ICA compression but it may be minimal enough that you’re not getting vascular symptoms.
The only symptom you mention which sounds like VES is the pressure feeling in the ear, but that could possibly be due to a nerve… certainly all the others sound more like classic ES, so I agree with @Isaiah_40_31
I have everything you described above, except the numbness/tingling of those areas you list. I do find it hard to talk at times (because my mouth gets tired, almost like I have experienced a workout or I’ve chewed really hard bubble gum), but this doesn’t happen every day.
Do you think I should send a letter to Dr. Constantino, through his MA, explaining my situation from start (2020) to now? I was thinking maybe this would be helpful to not “lose” symptoms and important things going on in “translation”.
One of our members, from personal experience, suggested sticking to the more well-known ES symptoms & not going in to detail about the weirder ones as sometimes that can scare a doctor off! That said, I’ve not seen Dr C myself so don’t know how open he is to listening to patients…personally I’d write down your symptoms & take them with you/ have them ready if it’s a phone appt., I wouldn’t write to him beforehand as you want him to focus on your scans and I’d imagine he’s busy, have your scans & notes been sent? Then if he seems open and has time you could go into more detail when you speak to him.
Hopefully those who’ve seen Dr C can give you an idea as to how open he is.
Okay. I did write a message to Barooz for his insights since he actually just had surgery with Dr constantino a few months ago. Since Dr constantino is familiar with vascular eagles it might not be as hard to talk to him as other doctors I’ve talked to in the past. Most doctors just want to talk everything up to anxiety or don’t have an answer for you.
My appointment is a virtual one on February 8th. I am hoping and pray for cancellation to get in sooner, but that could only mean next Thursday because he only sees patients on Thursday and that’s the only one there there will be before my appointment.
My experience with Dr. Costantino is he is seemingly not interested in nerve symptoms or regular Eagles; he would literally stop me and didn’t want to hear more. His interest/practice seems to be solely focused on Venous Outflow Obstruction, which is fine … I just didn’t know what I had and was hoping for help in figuring it out.
His response each time I tried to bring it up was I need more data. He works on scans/tests only so if going to him, would present your VES symptoms/scans and/or separate best you can your nerve symptoms and put at end.
If seems you have VES and have nerve symptoms as secondary (?) then those (if caused by the styloid not other types of compression (muscles, nerves, other structures)) should be resolved with styloid removal.
Nothing has been sent yet; I just spoke with his MA, Shantel, and I asked her if I could send at least the scan that shows the styloids that the Chiropractor did. She agreed, but said she would call me back by the end of the day to let me know and is trying to get my appointment moved up from February 8. I only have one test that shows any styloid issue – or at least one that anyone interpreted.
Because of the tight nature of the space where the styloid ‘lives’ and where cranial nerves come out of your head, certain nerves can be irritated from the existence of a long/thick/angled styloid.
The distal tip lies between the internal and external carotid arteries, pointing medially and anteriorly.4 10 It is thus in close anatomic proximity to several important structures: the internal jugular vein, the internal carotid and occipital arteries and the glossopharyngeal, the vagus, the accessory and the hypoglossal nerves (respectively, the cranial nerves IX, X, XI and XII).5 7 An abnormally curved or elongated SP may injure any of these structures.
Along with facial nerve XII.
Check the Newbies Guide Section about common symptoms & possible explanations, here’s a link:
I feel like I don’t have classic or vascular but nerve issues due to a giant calcified ligament. Seems like that can happen too right? Also maybe slight blood vessel compression so maybe leans towards vascular but I don’t seem to fit the bill for either. Anyone else??
That’s a good question because I also was told that there is an issue in that area and know that people have had that area shaved. Maybe Jules or Wendy can answer that question. I am not sure myself.
Do you live in New York? Do you think you have the Vascular or Classic ES form?
Yes, @Carrie68 & @GodisAWESOME - Dr. Costantino has a neuro or vascular surgeon assist in his surgeries for VOO & that doctor does the cervical shaving. Dr. C does the styloidectomies & whatever part of the vascular decompressions he can.
Nerve issues would come under the ‘classic’ ES bracket, you don’t have to have the trouble swallowing/ lump in the throat sensations to be classed as that…
Interesting. A couple of doctors I saw said they don’t think I have eagles bc most have throat swallowing issues. Seems to be everywhere in the literature that that is such a classic symptom. When I first read about eagles I also thought probably not what I have bc I also kept reading that.