Help! Possible Eagles, or something else?

Hello all, new here! Wanted to get any ideas of what may or may not be happening. Back in mid september I had a minor neck strain from what I guess was sleeping awkwardly. I woke up in a weird position and couldn’t really turn my neck to the right (sore, tense, and a really limited tight range of motion). I figured oh well, it was just a muscle strain that i’ve never really had this bad before. The very next morning I woke up with less soreness and I could feel my range of motion coming back but then all my symptoms hit together this exact day which was very telling, considering it was less than 24 hrs after my “strain”. Symptoms I have never felt before. No medical history or family history (late 20’s). Eye strain and pressure, new eyebrow headaches that are mostly there and dull, but sometimes hurt a little more randomly, off balance feeling, pulsatile tinnitus only when laying down on my side with ear down (left and right), head pressure, visible pulse in my neck on both sides but no major visible lumps, I am able to feel my pulse in a lot of places all around my face and head with my hands, and the biggest symptom is a pulsatile feeling in my neck on both sides that radiates through my neck and face and eyes that is constant and doesn’t seem to get significantly worse with laying down, bending over or standing. All symptoms are constant and only increase but never go away which is very odd, and these symptoms are obviously not normal especially for me considering they occurred all at once directly after this neck strain. At first was worried it was coming from my brain so I didn’t pay much attention to the neck origin and was able to get MRI, MRV, CT, and a CTA of my head and neck which was the only neck imaging I had. Also did some labs and an echo for my heart just to be sure and all normal. I was able to get a second review of the CTA and it showed some mild compression between my c1 and right styloid, while there was no contact on the left side. Styloids apparently measure 3cm on the right and 3.2 cm on the left. My CT does show this compression pretty decently in some of the slices which i’ll put below. I also noticed slight rotation in my c1 and c2 pulling upwards on the right. A UCC (NUCCA) also mentioned this rotation in their consultation and XRAYS without me pointing it out to them first. I am not sure what to do at this point or who to see (central TX). I am a huge believer that my neck strain caused a slight misalignment in my neck that my muscles locked into place and started to cause that vascular compression I feel. I could be wrong but who knows, I just don’t know where to go at this point. A UCC seems plausible but everywhere I read its either it has helped them or its a sham. Physicians i’ve seen before focusing on my neck where my GP, Neuro, ENT, and interventional spine specialist who just recently said Id be better off seeing a Cadiovascular Dr. I would like a CTV of my head and neck to accompany the CTA, ultrasound and possibly some dynamic imaging with flexion and extension but not sure what would be best with what I already have. Also to add, no sharp pain in my throat or breathing and swallowing trouble. What do y’all think, compression due to my c1-c2 rotation or a random sudden onset of eagles?

Wisdom teeth already pulled*

Your account is updated so feel free to upload imaging either in a new post or edit your original post.

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Welcome to our forum, @marcel_here. Sudden onset of ES symptoms is somewhat common. It seems the problems elongated styloids or those of normal length w/ other abnormal physical features can set off symptoms “at a moment’s notice”. Sometimes there seems to be no cause & others, like yours, can be due to a simple movement/head position that normally wouldn’t be bothersome. Though your styloids aren’t super long, they are longer than normal.

Your symptoms do point to possible internal jugular vein (IJV) compression & in light of the fact your imaging noted that, it’s most likely what’s causing the worst of your symptoms. I can see your styloid & the transverse process of C1 on the right are definitely squashing your IJV, & I’d say it’s pretty significantly. The left looks like it’s mildly compressed, but that level of compression could change depending on your head position.

Getting a CTV is probably not necessary since your IJV compression shows up clearly on the images you already have. The fact that you may have some extra rotation at C1/2 isn’t helping your situation. I’m sorry for my ignorance but what is a UCC? A doppler jugular ultrasound to measure the rate of blood flow through your IJVs at various points between skull base & collar bones would give some indication of how compressed your IJVs are, but the fact you’re symptomatic is enough evidence that you’d probably benefit from a styloidectomy w/ IJV decompression. We have the name of a doctor in TX, Dr. Welch, who does those surgeries, but we only have one member who’s seen him for surgery & don’t know how his outcome has been. Next closest to you would be Dr. Nakaji in Scottdale, AZ who’s done that surgery for a number of our members.

I disagree w/ the doctors who say you need to see a cardiologist. An ENT who is familiar w/ ES should be your next stop. Remember that styloid length isn’t the end all. A normal length styloid growing at the wrong angle, or is very curved, twisted, thick, pointed or irregularly shaped can cause all the same symptoms an elongated one can.

I’ve annotated a couple of your images:

I’ve circled your styloids in your CBCT

I’ve noted that in addition to your styloid/C1 compression, you have a small vein or artery across your IJV that may be contributing a bit to your compression as well. It’s hard to tell in this picture.

•Dr. Babu Welch at UT Southwestern, 5303 Harry Hines Blvd 7th floor, Dallas, has performed surgery for VES (also Dr Lee Pride, interventional radiologist can diagnose ES) https://utswmed.org/doctors/babu-welch/?utm_medium=organic&utm_source=google&utm_campaign=gbp&utm_content=website\\*

•Dr. Peter Nakaji, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772

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Thanks for all the info. UCC would an upper cervical chiro. Basically a subtle massage that realigns the c1-c2 from so much forward rotation. Ive been an athlete most of my life and workout often before this so its hard to say that styloids suddenly created all these symptoms, although it could be possible. I know many suffer from this syndrome so im open to all possibilites and knowledge y’all have to offer. For next steps, would a vascular specialist be the right move or at least help to see? I do think an ultrasound to track the pressure would be the best next move in terms of imaging.

Thx for decrypting UCC. We have quite a number of members who’ve had upper cervical chiropractic care (typically referred to as atlas-orthogonal chiropractors). There are 2 in FL who are very well known - Dr. Middleton & Dr. Hauser. Dr. Hauser tends to push prolotherapy which hasn’t proven helpful for reducing ES symptoms. Dr. Middleton seems a bit better about simply discussing what he sees in imaging & providing diagnoses. I’m sure there are some A-O Chiropractors in TX as well.

Dr. Hepworth, one of the most experienced vascular ES surgeons on our Doctors List, developed this protocol for US IJV studies. It doesn’t say in this info, but the valsalva maneuver is used at several of the stopping points along the way to help retrieve more accurate pressure measurements. If you want a more invasive test then getting a catheter venogram actually measures blood flow pressures inside the veins under fluoroscopy (contrast is given via IV). A catheter is run from the groin up into the brain, & blood flow pressures are measured along the way. That is called a venogram w/ manometry. These can be done by vascular surgeons or interventional radiologists. Angiogram is the term some doctors will use but an angiogram typically only looks at the arteries so if you go that route, make sure if an angiogram is ordered that it also includes a venogram. Because this is a more invasive procedure it does have some risks.

2024_02_20 Protocol Ultrasound Hepworth 1.pdf (783.4 KB)

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Hey marcel,

I don’t have the answers to your questions but wanted to chime in just to tell you that I had a similar onset for my symptoms. I was also similarly athletic and active. I was lifting weights and running a lot at the time and felt a right “pull” in my neck muscles. For about a week afterwards, it was like a severe pulled muscle in my neck. I could hardly move my neck and I couldn’t support my head from sitting to standing. After about a week though, it would heal and I would get most of my range of motion back. This happened twice in about a 6 month period. But within that year I started developing eagles symptoms. Fast forward 4 years and they found stenosis of my jugular on both sides. I also wanted to mention that my images look very similar to your right side.

I don’t know why this would have just started out of nowhere because of a neck injury, but a lot of eagle’s patients’ symptoms seem to start after neck injuries (usually car crashes) but maybe this counts too? It’s also possible that this “tweak” of the neck was actually just your styloids finally causing enough problems (or maybe got long enough?) to literally hit a nerve which felt like a kink in the neck.

Again, I’m probably not being helpful but I wanted to let you know that I was in a similar position and have since been checked out by one of the doctor’s mentioned above (Dr. Nakaji) and he confirmed this is very likely why I feel the symptoms I do.

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Can’t really add in anything to the discussion as @Isaiah_40_31 has given you lots of info & @RobotEagle too, but just wanted to say hi & welcome, & hope that you get some answers soon! Oh, & that I didn’t have the more common ES symptoms of throat pain, swallowing issues etc, so you don’t have to have those to have ES…

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Thanks for the helpful info. My symptoms definitely affect both sides of my face and head but im not sure if thats due to the pressure increase from one side. I know the styloid on the left side doesn’t even touch the JV but it does go right into the much smaller vein or artery thats right next to it. It goes right up to the left tmj/ear area as seen in the pics. Aside from trying to get some more imaging such as an ultrasound I don’t know what other scan would be helpful as well. On top of all that, would it even be worth it to have any virtual visits with other physicians just to see what they say since I don’t know of any ES specialists in the central TX area. Im not currently thinking about surgery or any drastic efforts yet because I wouldn’t know where to go and traveling out of state doesn’t seem likely either, at least at this moment.

As I mentioned, an ultrasound to measure blood flow velocities above, at the point of compression & below there would be telling. I sent the link for Dr. Hepworth’s protocol for that test in my previous post.

You could get a CTV which would look at your IJVs. If you can get it done dynamically i.e. w/ your head in various positions - turned L/R & looking up/Down that can show in what positions your compression is more severe.

Dr. Babu Welch is in your state & you could have a consult with him. You can also possibly get a consult with Dr. Cognetti, Dr. Nakaji &/or Dr. Costantino as I think they all do phone consults & all three deal with vascular ES.

•Dr. Babu Welch at UT Southwestern, 5303 Harry Hines Blvd 7th floor, Dallas, has performed surgery for VES (also Dr Lee Pride, interventional radiologist can diagnose ES) https://utswmed.org/doctors/babu-welch/?utm_medium=organic&utm_source=google&utm_campaign=gbp&utm_content=website\\*

•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. Works with Dr Heller now to do C1 shaves
https://hospitals.jefferson.edu/find-a-doctor/c/cognetti-david-m.html Does do online or phone consults.

•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS .
Does do online or phone consults we believe.

•Dr. Peter Nakaji, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772

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I circled some images below to see if anyone has the same ideas but I believe thats the external carotid? This would be for my left side, this styloid doesn’t touch the jugular but it seems it goes into or up against that external carotid? Could explain the left sided symptoms and some mild left ear pain, not sure? (I deleted some of the jaw bone to show more of the styloid on the 3d image)

There’s some artefact in those images, & I’m not an expert at reading images, but I think you could be right about the ECA…although if it is the ECA in the second image, your styloid looks like it’s touching at the carotid artery bifurcation (where the carotid artery splits into the internal & external carotids), but I thought the bifurcation is usually lower in the neck nearer the hyoid…could be wrong though, and everyone’s anatomy is a bit different!

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Good observation, @marcel_here. The area where your styloid seems to be sitting appears to be right at your carotid bifurcation in the first picture but more on your ECA in the second one. The carotid sinus is located right at the carotid bifurcation & when it’s irritated it can cause some uncomfortable symptoms such as reduced heart rate, a drop in blood pressure, causing dizziness or syncope (fainting), & temporary full or partial vision blackout. We also know that carotid irritation can cause neck pain, TIAs (mini-strokes), trouble speaking & other stroke related symptoms. Are you having any of the symptoms I mentioned?

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Out of those only an off balance feeling that has been slightly heavier at times, and then not as heavy other times. BP and HR (track at night too) has always been in range since September. None of those other symptoms.

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