@Leah Thank you. I think that I will have to wait for the ENT to order it, as he knows the best radiologist and scan centre to go to in Sydney.
There is a large variation in scan machine quality here. Some radiology centres are running really old CT machines with low number of slices and low image quality. It can be a real gamble, and I want to make sure that I get the best quality images possible.
@KimberlyNYC Thank you. Honestly, I’m glad for the extra time to read this forum. It has helped so much with my understanding and confidence, but there’s so much that I still have to learn, and I don’t want to feel like I’ve missed any important steps.
Hey @Buzz - those older machines also likely give the patient a higher dose of radiation than the newer machines. Good plan to wait for a newer better CT scan!!
I just got the results of my CT-V scan (there was some issue with the portal that delayed them). The only thing they found was “mild” flattening of the IJV on the right side. No stenosis. I’m devastated. I’m worried this means that Dr. Costantino won’t operate on me and/or that I haven’t found the source of my pain. My doctor who originally diagnosed me thinks they should’ve done the CT-V scan with rotation—I wonder if that would make a difference?
I’m trying not to spiral too much before I see Dr. C on Wednesday (my appt was moved from last Wednesday, presumably for @GCD’s surgery!).
But it’s tough.
Dear BriCSP. I’m so sorry you’re once again in a period of uncertainty.
Where did you have the CT-V done?
Remember that the CT-V was looking specifically at IJV compression and that most radiologists don’t have experience correlating grades/levels of IJV stenosis with clinical symptoms. Dr. Costantino will be looking at the actual images of the CT-V study not simply reading the report.
Most importantly: remember that you can have Eagle Syndrome - with considerable pain/symptoms/impairment - without having significant IJV compression. The elongated styloid is in a small anatomical space with numerous nerves and classical (non vascular) ES is troublesome all on its own.
I hope the time between now and your consult on Wednesday flies by, and that you’re feeling more hopeful after your appointment.
Sending you a hug. You will find a way through this!
@KimberlyNYC has said it really well! Obvs depending on the angle of your styloid then rotation or flexion could compress the IJV, which won’t have shown on the CTV. Did they say what was causing the flattening?
I hope that Dr Constantino will take into account your non vascular symptoms & will help you, you have a diagnosis of ES so try not to let your anxiety get out of hand
@BriCSP - I believe Dr. Costantino operates on non-vascular ES as well as vascular as @Jules mentioned so you should have no worries. Hopefully he’ll take a good look at your CT-V & will know that it was done in a static not dynamic way & will take that into consideration.
Thank you so much @KimberlyNYC, @Jules, and @Isaiah_40_31. Your responses were exactly what I needed!! I really appreciate your thoughtful replies and for grounding me. You’re right that my symptoms could also be non-vascular. I had a nice right-sided migraine this morning to remind me that what I’m experiencing on that side is very real, and seems so obviously correlated due to the location and type of pain. There also seems to be a lot of nerve involvement, due to the radiating pain and the fact that my right eye tears when I have the migraines, etc.
I have endometriosis and adenomyosis and have undergone decades of pain and several surgeries for those issues (along with related ones caused by them—a labral tear and hip impingement and three hernias), and I just want to be pain free!!
Thank you again! I’ll let you know how it goes with Dr. Costantino tomorrow!
Hi BriCSP - I just happened to be checking my email when your reply came in and a few things caught my eye.
If your eye tears with your migraine/migraine type headache, especially if you have intermittent extreme stabbing pains, you may have cluster headaches. Cluster headaches have a histamine component: ipsilateral to the headache (same side) your eye may be red and tear, your nostril/sinus may be clogged/dripping. It might be worth doing a little reading about cluster headaches; if other symptoms/characteristics resonate it’s worth seeing a headache neurologist, specifically find one who’s familiar with cluster headaches. They are known as the suicide headache. I have them and can also attest that cluster headache pain is different to what I know to be ES pain. In other words, you may have more than one pain generator.
I also have endometriosis. I can feel your years of physical suffering in your reply. Of course you want to be pain free (or as close as possible). You are a warrior but it’s time to put down your sword and have some corporeal liberation!
I hope your appointment tomorrow goes well, and that you have some meaningful measure of peace soon.
Edit: I’m not suggesting that you have cluster HAs, but the eye tearing caught my attention so I thought I’d mention it.
I’m sorry you have other painful things happening in your body @BriCSP. I also hope your appointment tomorrow goes very well & look forward to hearing about it when you feel like sharing.
Thanks @KimberlyNYC, for letting me know about that! Dr. Costantino brought up cluster headaches too and thinks I should try treatment for that as a precaution before proceeding down the Eagles path. Reading about that now, though, I don’t think that’s it. It’s more like a constant pain/discomfort that builds to a migraine with certain triggers. It’s been constant for ten years and it’s never sudden. I have tearing, but not redness or congestion or anything else that feels histamine-y. I have an appointment with my neurologist tomorrow, but if he agrees with me I think I’ll decline to pursue that path.
The CT-V showed a not insignificant amount of compression, but not enough that it was a slam dunk. After the cluster treatment Dr. C’s next step was to try a CT-V with rotation (they couldn’t do it both on the same day as the neutral one because it was too much contrast for the kidneys). I asked if it could be nerve-based pain too and he said definitely, but I guess there’s no test for that so he can’t get the same certainty?
I appreciate his caution but after reading and talking to various doctors this feels like the right path.
Also, what’s the deal with endo and Eagles?? I’m in a support group of ten endo patients and three of us have Eagles diagnoses.
Good question, @BriCSP. In my opinion, we’re finding more & more of our members have other problems besides ES. When I joined, it was mostly thyroid & TMJ, now it’s (v)ED, MCAS, CCI/AAI, CSF leaks, various vascular compromises, and the list goes on. Most of these are blamed on the currently popular medical buzzword - inflammation, but what does that really mean in each case & what has caused it? Sometimes it’s heredity, sometimes environmental factors or injury. This is one of the giant puzzles the medical world is trying to solve.
I hope you’re finding some clarity about how to move forward and that surgery helps you!
Fascinating that 3 our 10 women in your endo group also have ES. Wow! Proliferation of cells/tissue where it shouldn’t be growing is one commonality. I wonder if one day gene mutations or bio markers will be identified…
Thanks, @KimberlyNYC and @Isaiah_40_31! I just received the results of my MRV:
Each IJV is flattened at level between the styloid and C1 transverse process, with improved caliber when turning head to ipsilateral side.
Right side is dominant and shows a greater degree of narrowing between styloid and C1 when turning head to left.
I think I’m kinda back where I started—the compression is there, but maybe not severe enough to explain all my symptoms, which are completely right-sided. I still feel like the nerve involvement is significant, but that Dr. Costantino won’t be convinced without imaging. I still want to push him to operate—everything I’ve read and felt lines up with this diagnosis. I hope my symptoms can be taken as seriously as imaging.
Unfortunately I’ve been having trouble scheduling a follow-up appointment with him. They’re saying he has limited availability in June. Fingers crossed they can squeeze me in soon!
I hope you can see him soon- have you asked to go on a cancellation list? Some members have been able to get in earlier that way, if it’s possible?
It sounds like he’s just in the office limited days this month, but I’m waiting to hear if they can fit me in Friday or do telehealth. Otherwise I’ll ask about. a waitlist. Thank you for the suggestion!
The results of both your CT scan which showed elongated styloids & whatever testing you had done to demonstrate your styloids/C-1 are compressing your IJVs should be adequate evidence that you need surgery. I’ll be surprised if Dr. Costantino turns you away. If he does, there are other doctors on our list who most likely won’t.
This is heartening, thank you! It seemed like Dr. C was looking for total compression, but I think my symptoms would be more dramatic if that was the case? He never outright stated that, though. I also had a diagnostic nerve block which took away some pain from my ear and sinus. Fingers crossed it’s enough!
Please let us know what happens re: Dr. C & surgery. We’re here for you through it all, @BriCSP!
Thank you so much! I’m happy to say we’re moving forward with surgery. The radiologist was being coy—the imaging was actually super dramatic. The compression is bilateral but it’s worse on the right and that’s where my symptoms are. I met Dr. Tobias who will be operating with Dr. Costantino. I need to schedule but we’re aiming for early July. Thanks so much for all of your support, everyone!!