Oh boy do I need help with opinions on my scans

I have plenty of symptoms associated with Eagles. Right now, I just want to see if you think this looks like it. 4.2 and 3.7 are the measurements. I just got a call from the office of the ENT surgeon and they are walking back the claim that I don’t have Eagle Syndrome. Now the claim is they aren’t long enough to operate.

When and if I can figure out how to post the pics from my 3d rendering and CTA I will come back and post so people can compare their situation. I have some version of Jugular compression.

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Lots of Drs dont know ES well or dont’ want anything to do with it. Those are sizeable styloids. Radiant Viewer is pretty simple, just download, select the folder/cd with all your images, click 3D at the top, and then play around with it. Tutorials online about how to use it. Check out the DR list. My local ENT confirmed diagnosis, and offered to remove some portion of the styloids, but I had learned via this website that is not the best treatment. So, I reached out to about 6 doctors initially. Have it narrowed down to 2. One is a 4 hour drive away and the other is a flight away. But hoping to get the first side done in the next 4-6 weeks. If you do have compression then your list of Drs is only about 6 total. Hepworth in CO, Nakaji in AZ, Constantino in NY, Coniglio in NY, Fargen in NC, and maybe (@Jules @Isaiah_40_31 can maybe confirm this last one) Osbourne in CA. There is a FB group for jugular compression too, but its not exclusive to Vascular Eagles Syndrome, still a good resource though, it does have a Drs list too

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Dr. Osborne has reportedly done a vascular decompression surgery on one of our members, but we don’t know if he has begun doing them routinely. Dr. Damrose at Stanford Univ. Hospital in Palo Alto, CA, was trained by Dr. Hepworth & has also recently begun doing vES styloidectomies w/ vascular decompression.

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Your styloids do look long & the left one is especially angled inward which can also cause worse/more symptoms. I think the doctors you’ve seen don’t have enough experience w/ ES & you need to look elsewhere for help.

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Thanks everyone for the info. I will say this for people in Indiana who are looking for help: Dr. Michael Sim at Indiana University hospital does do Eagle Surgery. I presented with classic symptoms to their ENT department. I was never checked for Eagle syndrome nor was it ever mentioned. An ultrasound was done finding an enlarged lymph node. (I have tested positive on the Pre-Sjogrens blood test)

A urgent care visit at a much later date…probably a year later (due to swollen face and neck and pain in jaw) led me to the dentist Garrett Fiorenza because I thought I had some dental problem. He recognized Eagle Syndrome. If I hadn’t happened upon him by sheer luck I still wouldn’t even have heard of this syndrome. I had a CT orbital scan a few years ago where this supposedly shows up but it was not notated.

Dr. Sim is the one that put a note in my file that said I did not have Eagle Syndrome after looking at imaging that included 3d reconstructed CTA that specifically measures the styloids and said they are elongated. 4.2 and 3.7 AND said the right one is causing a mass effect on the C1 area that is severely narrowing my jugular.

Take from that what you will.

My recommendation is that if you are stuck using IU ENT double check everything and advocate for yourself.

I am seeing an oral surgeon in the dentistry dept. on Monday on the same floor. We will see if he is any better.

I am putting this out there for people who have to deal with this in Indiana in the future. Believe me when I say you will be very very fortunate if you do not experience A LOT of medical gaslighting in Indianapolis on this issue. Don’t lose heart. Keep at it. Dr. Adam Harker, GP will listen to you and does try to help even if he is not familiar with an issue. He does not treat you like a hypochondriac.

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I agree with the others that your styloids look long enough & certainly angled enough to potentially cause symptoms…we have had members whose styloids measure longer when they’ve had surgery too, it’s not always an accurate measurement. I agree too that if you have jugular compression symptoms then the doctors mentioned would be the best ones to try & see if you’re able too.

@JugularEagle - Since you have known IJV compression, I highly recommend you not consider an oral surgeon to do your surgery. You need to see someone who is experienced with styloidectomy & IJV decompression as that is not to be taken lightly & is a more complex surgery than a styloidectomy alone.

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I concur. I made the appointment so I could get a CBCT since less radiation than a CT but it was before I got that CTA. Since I am having Lacunar strokes and microbleeds a neurologist told me I should go ahead and get the CTA. I theorize that having a hairpin turn in the Carotid artery that is causing narrowing by 50 percent AND having a Jugular severely compressed that I am more susceptible to strokes but no Doctor seems to believe me yet. I know some take Plavix but it is one of those rock and hard place issues. It can cause more bleeds.

Since I have the appointment I am just going to get the opinion. Plus, I want it on the record that I have Eagle Syndrome. Also, this is going to be a huge fight with insurance so I have to jump through a lot of “I can’t help you” appointments. I am only about a year from Medicare and that might open up my options by the time I actually get to the surgery.
Thanks for the opinion. It really helps.

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@JugularEagle - I’m on Medicare, & it definitely does open up your surgical options, however, w/ the Lacunar strokes & microbleeds, you may need surgery sooner unless those are well controlled now. Strokes are typically a symptom of carotid compression or irritation. IJV compression in the context of ES isn’t normally a cause of strokes or stroke-like symptoms. It sounds, as you noted, that you have troubles going on with both your jugular & carotid vascular tissues - a double whammy. I’m very sorry you’re dealing with this.

You’re correct that w/ your microbleeds, Plavix might not be the best for you though it could help stop the Lacunar strokes as blood thinners are Rxed for stroke prevention.

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Thanks. I had wondered if any of these Doctors took Medicare. It is kind of shocking how little Doctors get paid from any insurance versus what they bill. My insurance can try to come to an agreement but a skilled Doctor listed on here might choose to say no. It is definitely something many of us here have to deal with if we aren’t lucky enough to be a State with an Expert.

I have contemplated taking Plavix every other day or some such thing. I am getting my affairs in order in case the big one happens and I can’t communicate.

After what I have been through to even find out about this I really think there are a lot of Eagle Syndrome people out there that just don’t know it. I still can’t even believe a Doctor put a note in my file saying I don’t have Eagle Syndrome when I CLEARLY do. It’s a crazy mixed up Eagle Syndrome World :crazy_face:

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@JugularEagle - I will be praying that you can get in to see a doctor who can treat you before anything major happens to you. Insurance has gone down the toilet in our country with the games they play w/ the medical profession. See if you can get a case manager via your insurance company. We’ve had several members who have been able to do that & it’s helped them get approved for surgery w/ out of network doctors even after they’d hit a brick wall w/ their insurance. Someone like that could be very helpful for you.

I had bilateral hip replacements done in 2022 in one surgery WITH Medicare’s approval, & once the surgery was done they took a step back & denied it because the reviewing doctor claimed I could still tie my own shoes & didn’t require a walker pre-op. They asked for the money my doc had been paid to be returned to them. The Medicare doctor didn’t take into account that I couldn’t sleep at night & nothing helped kill the pain which literally radiated in waves from my hips to my toes once I was lying down, but I didn’t get to plead my case although I’ve considered trying just because I have the “how dare he suggest I didn’t need the surgery!!” mindset.

My orthopedic surgeon’s business ofc appealed my case for two years presenting every speck of evidence they had that surgery was warranted (not to mention, why would any sane person opt for bilateral hip replacement if it wasn’t needed?!?) including x-rays & MRIs from two other doctors who also diagnosed me as needing bilateral hip replacement. It would have cost Medicare more if I’d done them one at a time, & it would have cost me 2 years of my life healing so I’m very thankful to have had it done all at once.

I was told that surgeons have insurance policies to cover such cases so it’s not a total financial loss for them, & I wasn’t billed anything extra because of the denial, but they shouldn’t need to that sort of insurance. It’s really a sorry situation.

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I don’t know if it’s helpful, but we have had several members who have appealed their insurance company’s decision to not send them to one of the expert VES doctors because the doctors they were referred to on their insurance weren’t skilled enough to do the surgery…I don’t know if that would be possible for you? @lilwider had a long battle but eventually won:
Update …final appeal - General - Living with Eagle

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I looked at my imaging. My copy is missing one of the referenced series (coronal series 502 image 123)so I Have to track down that issue. I can’t find anything that looks like those beautiful 3 d renderings of the skull on mine but some version of 3 d was done. This is viewed on something called Weasis. I did screenshot snip on windows . I have no idea what I am doing but maybe someone can help. Before the report came out neurovascular Surgeon told me he saw no evidence of a problem with carotid artery or jugular. The contrast was injected into the left arm which can affect imaging (right versus left) as per surgeon.
I realize that people here aren’t Doctors and not radiologists but Doctors aren’t helping me right now.

The big question I have is what happen when I turn my head especially on this part “thin interposed fat plane” is the only thing protecting my ICA. But of course, that is the series of pics that I am missing.
the report on relevant issues:
CTA NECK:
Elongated styloid processes bilaterally, right greater than left,
measuring 4.2 cm on the right and 3.7 cm on the left (best seen on
the coronal MIP images series 506 image 122).
Although the adjacent styloid processes are elongated, there is no
definite mass effect on the carotid arteries. However, the right
styloid process closely approximates the cervical right ICA with a
thin interposed fat plane (coronal series 502 image 123). Torturous
right cervical ICA with focal, approximately 50 percent narrowing at
the level of C2-3 at a hairpin turn (coronal series 503 image 122).
This is area of narrowing is upstream of the styloid process and not
immediately adjacent (for example, see the circle on series 503 image
124)
Right styloid process does exert mass effect on the right internal
jugular vein with severe narrowing between the transverse process of
C1 (sagittal series 504 image 177).




I’m not knowledgeable enough to comment on your images, but the report does say the narrowing of the ICA is up from the styloid, but if it’s already narrowed 50% there, maybe even a small constriction by the styloid if you turn your head might have an effect, just a guess though? Frustrating that you haven’t got those images!
In the 3rd image, you can clearly see the considerable compression on the IJV by the styloid & C1 process…

I am going to print out all four images and specifically ask the oral surgeon his opinion about them. Seems like I am going to have to try to get to Dr. Hepworth. Do you know if these few surgeons that do that IJV issue have to have CT scan or can they at least look at CTA. I don’t really want another round of radiation yet. I know before a surgery they would probably want CT but right now I just need an opinion. Still ticked off that an ENT said I don’t have Eagle Syndrome and totally dismissed me. I need to confirm officially that I do have it.

thanks for taking the time to look at the pictures. I have only known about this issue since January after the Dentist visit. I can’t imagine having to go through too many more years like some have trying to wrangle the system.

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@JugularEagle - Your CTA is fine to submit to Dr. Hepworth. He won’t need a regular CT since your current scan shows what he needs to see.

The only image of the 4 you sent where I can see something significant is the one below. I’m not sure what I’m looking at in the others. You IJV is really squashed between the left styloid & TPs of C1!

The fact that your right styloid is very close to your ICA on that side could mean that in certain head positions, the styloid makes contact w/ the ICA & perhaps causes some irritation or compression. You do have symptoms that agree with that. possibility.

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Thanks so much for that picture. I want to use it to get across to some of these Drs that I have an issue. However, I need to see if it needs a correction. That image is referenced by the neuroradiologist as being the right styloid and right IJV. Is there something that you are seeing that makes you think it is the left?

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Good spot @JugularEagle ; I hadn’t twigged that the radiologist said IJV compression on the right side, had just presumed as @Isaiah_40_31 did that this is the left side in the image you’ve posted, I would’ve thought if it was the right side it would be the other way round…Could be wrong, but this is the way round that I would expect:

This is really bugging me because the radiology department has made mistakes on my scans multiple times. One time they mislabeled R versus L and blamed it on transcription. Another time they notated my ovarian mass but did not note an approx 1 cm mass on the adrenal gland that was important. Didn’t know it existed until a Doctor couldn’t figure out what they were referencing in a subsequent scan 2 years later.
I went back to look at this. It is using Sorna Catapault with a Weasis viewer. I am going to chalk this up to me not knowing what I am doing for the moment because there is no series showing the image flipped. On this particular series there are 499 frames and 177 is the one notated by Radiologist. I see nothing to say it is the right side but it is probably somewhere if I clicked the right thing.
This might tell me if I was a radiologist under Dicom info:
image position: 124.5, -4.699786, 697.164934383202
image orientation : 0.0, 1.0, 0.0, 0.0, 0.0, -1.0

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@JugularEagle - I’m sorry for my error, & thank you for the correction. I read what the report said, but the position of the image made my brain flip to thinking left instead of right… I’ve corrected it to just IJV. It’s actually good that all your trouble is only on the right as that’s a good indication that unilateral surgery may be all you need.