Hello,
Thank you all for being here to support others with Eagle.
I am the Mom of a 17 (almost 18 year) old. Her name is Ellie. Ellie became ill in August of 2024. Dx- POTS, MCAS, hEDS, ME/CFS, Long Covid (Kennedy Krieger Institute & Johns Hopkins). My ADHDer (with strong H) became bed and wheelchair dependent. Her cardio did a lot of testing. On Oct. 24, 2025 they found 75% left jugular compression. He felt her neck and immediately said Eagle. He wants imaging and it is over 2 weeks and we still can not schedule because of a back and forth between doctor and hospital.
I called her former orthodontist and he pulled up her CBCT from April 2024 and pretty much confirmed an elongated hyoid.
So- here is where I am. I can’t stop googling. I am petrified that her runny nose (common with POTS is CFS, can that compression on her jugular puncture because she moves her neck? This is me all of the time.
She has no friends because high school kids are jerks!! She got sick and they noped out of her life. Maybe this is a rant.
But can someone address my concerns about CFS and jugular puncture? Does this happen? I don’t sleep for more than an hour at a time and maybe get 3-4 hours of sleep per night.
Also, has anybody had surgery in the DC/Baltimore area?
Any recommendations are appreciated and welcomed. I feel so overwhelmed and defeated right now.
Dr. Peter Costantino in NYC is your best bet in your region, one of the best overall, for Eagles with IJV compression, Peter Costantino, MD - Brain & Spine Surgeons of New York .
@Nate welcome to the forum. I’m so sorry to hear about your daughter. She’s lucky to have you in her corner.
Do you happen to have access to the CBCT? Also, what imaging did they use to determine 75% compression of left IJV? I’m guessing ultrasound or a CT with contrast?
The reason I ask if you have access to the CT is because I help most members with interpreting their imaging. I’d be happy to take a look at any/all CTs you have access to. Let me know what you think.
Just to ease your mind a bit - I don’t think there are any documented cases (that I know of) of a styloid puncturing an IJV. This is because veins are VERY malleable/bendy/stretchy. I suspect her POTS symptoms are due to compressed vagus nerves between the IJVs and C1 (which is caused by styloid compression). I’d have to look at the imaging though to know more. A head and neck CT is the gold standard for assessing eagle syndrome and vascular compression. So if she has yet to get a CT with contrast, that should be top priority. I hope that is the imaging that you are currently waiting for?
Thank you so much!! Do you know how long I would need to stay in New York for surgery and post op? It is over 4 hours from my home and another fear is complications and being that far from the surgeon.
Thank you!! I do have access to the server the CBCT’s are on. Unfortunately, I am having trouble viewing them. I am going to call the orthodontist and ask him to put them on a flash drive. The cardio found the compression during a neck sonogram of carotid and jugular. As soon as I have them on a flash, I will post them for you.
I should also add that her orthodontist is an oral maxillary facial surgeon that decided to do orthodontics. My parents are a dentist and hygienist. I am milking their guilt for all the meals 
. My Mom is chef level in the kitchen.
@Nate I have surgery scheduled with Dr. Constantino next March and I’m required to stay in the area for six days after surgery (Friday - Thursday)
I’m so sorry that your poor daughter is dealing with this, and that you’re having to see her feeling rough too, very hard as a mum…
I agree with @TML that jugular compression by the styloids would be extremely unlikely to cause a tear, so she should be okay. We have had members whose IJV one side has been almost completely blocked. It would be unlikely to have a constantly runny nose with a CSF leak I think- we have had members who have had high intracranial pressure with IJV compression, which can then cause a leak, usually you would get a bad headache with that, especially when sitting or standing for long, does your daughter get that? She might get a metallic or salty taste in her mouth, & dizziness would be common with that too, but I guess with her POTS it would be hard to differentiate! You could get the fluid tested if you are worried about that, it might put your mind at rest?
As @Andy89316 suggested, Dr Costantino is very experienced with VES, and also Dr Cognetti in PA. Unfortunately there aren’t that many who are experienced with VES, so there might be a wait, but it is worth seeing one of them as with IJV compression it’s important to remove the styloid process very close to the skull base, and not all doctors are skilled enough to do this. They also usually check for any other compressions, for example some muscles, the C1 process or other blood vessels can cause compression as well.
Had your parents ever heard of ES?
Thank you! Yikes!! May 2026? Good
Luck to you!!
Thank you so much!! I finally crashed this morning and slept for a while 5 hours! It was amazing.
HORRAY for a solid block of sleep!! So glad you were able to relax & get some much needed rest, @Nate!
Hi @Nate ! I’m so glad that you found this group. There are so many helpful people here and it is great to be able to benefit from the knowledge that others have after going through diagnosis & treatment for ES. I’m sorry that you and your daughter are going through all of this, but hopefully you will get definitive answers soon and be on your way to getting her feeling better. I want to let you know that I had surgery with Dr. Costantino in NY about a year and a half ago. He is very experienced in dealing with the vascular ES. I live in VA, so close to you & I know that it’s a bit of a hike up to NY. I had my surgery on a Monday morning and was able to come back home on Friday of the same week. I also had 2 appointments prior to the surgery that were in NY. I was lucky in that Dr. C was able to call in the neurosurgeon while I was meeting with him so I was able to see both of them at the same appointment. There was a presurgical appointment that I had to go to at the hospital about 10 days before the actual surgery. So there is a bit of travel involved Also, Dr. C will do telehealth consultations if you send him all of the scans and you can get his take on the situation without having to drive all the way to NY initially. If you can get the CT scan with & without contrast soon that would be the first step in moving forward. I would recommend you calling Dr. C’s office & talking with them about your situation to see how soon he can do a consultation. Dr. C & Dr. Tobias (neurosurgeon) were very reassuring that my IJVs would not be severed due to the elongated styloids even though I had compression on both sides. I had previously been told by another doctor to not look to the left or right because the compression was bad on both sides. Dr. C reassured me that I didn’t need to worry about that. Did the carotid ultrasound identify if certain head positions cause certain levels of compression? I can certainly understand your anxiety over the situation. I’m a mom of 3, so I totally get it. I also understand about the whole high school friend stuff. My eldest daughter had a group of “friends” that started bullying her when she was 16. I’ll keep Ellie in my prayers because I know that she is going through a lot right now. Please feel free to reach out to me if you have any questions. & keep us posted on how things are going.
Thank you so much for all of the information! I am sorry your daughter was bullied as well. It is horrible. Ours was 911 calls, sheriffs department at 2am, Dept of Juvenile Services, Court, and finally a no contact order. I wish all of this on no one- even the child who bullied my daughter.
Her compression is constant in all positions. The cardiologist said if they can feel it and their sonogram machine picked it up, it is severe. But this must be a living Hell for all of you!
Thank you so much for the prayers!! That is what is getting me through this daily.
Thanks again!!
No. They don’t teach Eagle to dentists and hygienists. Our orthodontist is a maxillary facial specialist and he said he has never seen it and wants to be as much of a part of El’s journey as I will allow. With that said, my parents are both retired now, so it may be taught now, but not when they were in school. The orthodontist is about 60. I should add, that I was always the old mom of Ellie’s classmates. I am 50.
I was also an “old” mom, @Nate. Nothing wrong with that!! 
I was the young mom for my first, average age for
My 2nd and an old for El.
Old Mum here too 
Hi. I’m new here. Just wanted to say that as a mom of twin 21 year old girls, I really feel your pain. My story is kind of similar to Ellie’s in terms of a bunch of recent diagnoses (EDS, POTS, MCAS, long COVID and chronic EBV), and now this stuff. It’s all so overwhelming, and I’m 57 years old. I can’t imagine going through all this as a teen. If you can, I hope you consider getting her a good therapist, maybe thru her school. And please reassure her, as a fellow bullied kid from HS, it gets so much better. College is amazing. Whatever you do, I think most people will say, life is much better after HS. Hang in there, t.
You are so incredibly sweet! Thank you so much. It is hard for me because I don’t know what she is feeling. She actually has 2 therapists. One is a trauma specialist and the other is a social worker. El hasn’t been in school since 11/24. She is doing her work virtually and is scheduled to graduate in June 2026. We did a test called GeneSight, so we don’t have to guess which medications work best for her body.
I really appreciate your suggestions and reaching out. When she does something, she goes BIG