So I have a catheter venogram scheduled with dr Mehta on Feb 11. And am very nervous, not about the procedure itself but the results. I wasn’t given much information about the after care plan. As I understand, if there is no compression dr nikaji will not even do a follow up consultation? Does he only deal in Eagles with compression? Will he not just do a styloidectomy? And if there is no compression, where do I go from there? I’ve been stuck for months in just a treadmill of specialists and neurosurgeons in my area who know nothing about eagles. I’ve been diagnosed Eagles because of symptoms and elongated calcified stylohyoid by an ENT in my area, but he is not experienced with removal. Im really needing help. Does anyone with past experience with him know his MO? ill be lost to know where to go next if he will not even consult…other Dr’s ive contacted on the list ( hackman, hepworth, constantino) have 9 month waits..
@Cindyd - Dr. Nakaji doesn’t usually refer patients to Dr. Mehta unless he sees there’s IJV compression along w/ the elongated styloids. The bugger with him is that if the pressure gradients noted during the venogram aren’t severe enough then he won’t do surgery even if there is some IJV compression. Sadly, he doesn’t seem to give much weight to how bad a person’s symptoms are, only to how much the compression is impacting the blood flow through the IJVs.
The other doctors, except Dr. Hackman, you’ve contacted are all vascular ES specialists. I’m surprised Dr. Hackman is booked out 9 months. That’s not typical for him. If you don’t end up w/ IJV compression. We have quite a number of doctors on our Doctors List who do surgery for the non-vascular version of ES & most of them don’t have extensive wait times.
Here are a few you could consider if things don’t work out w/ Dr. Nakaji:
Dr Osbun, Washington University , St Louis
[Joshua W. Osbun, MD - WashU Medicine Physicians]
(https://physicians.wustl.edu/people/joshua-w-osbun-md/) Has told one member he’s done lots of surgeries, is aware of VES.
•Dr Coughlin, Methodist Hospital, Omaha (Head and Neck Oncologist, has done external skull base surgery 7-10 times, and steroid injections) is under construction
•Dr Jason Cundiff, 27790 IL-22 Ste 27, Barrington, IL, (847) 649-6000, (Does intra-oral and external surgery) https://theentcc.com (We have been told he’s no longer seeing ES patients, so best to check before making an appointment)
•Dr Katelyn Stepan, Northwestern Medicine, Chicago, Katelyn O. Stepan, MD | Northwestern Medicine
Thanks. So im a little confused…if he doesn’t feel the pressure gradients are high enough, he doesn’t feel the c1 is involved? like a resection is totally not necessary? Or would another dr feel according to pressure that c1 shave is necessary? Is dr nakaji just very conservative?
I had a video consult with Dr Osbud…he was not knowledgeable at all. Said he had only done the surgery a handful of times, and was very obvious he was not comfortable with it. I would take him off the list.
When I spoke with Dr Coughlin office, they told me he does not treat Eagles syndrome??
@Cindyd I would say Dr. Nakaji is very methodical rather than conservative. I think every surgeon on the list has their own criteria for choosing patients with the goal of having a positive outcome. Dr. Nakaji puts a lot of weight on manometry to decide whether or not he think a patient will benefit enough from surgery to make the risk of the surgery worthwhile. Wishing you well!
Pressure gradients don’t necessarily mean C1 is or is not involved. Compression can be caused by styloids alone, C1 alone, styloid + C1, &/or by soft tissues such as another blood vessel, a nerve, muscle (usually posterior digastric or SCM), lymph node(s), connective or scar tissue.
Unless he’s stopped doing them, Dr. Coughlin at least used to do ES surgeries:
I updated the note by Dr. Osbun’s name to reflect your experience with him. For the time being I need to leave him on the Doctors List as we have members who can’t travel out of state for surgery so he could be someone’s only resource there.
I hope that the venogram correlates with your symptoms and that Dr Nakaji agrees to help you 
The C1 shave is a different element entirely to the issue around elongated styloids & eagles, but seems related because of how often they’re paired and how often the surgeons shave it when they’re doing the surgery.
The C1 vertebrae can be positioned in such a way that it clamps vital arteries and veins between your styloid and the C1. In some cases, this is because the C1 is ‘pushed out’ in comparison to where it typically is, in others its because of the way your styloid is shaped.
In some cases, for whatever reason, the C1 needs to be shaved a bit along with the styloid being removed to reduce compression.
When I was talking with Dr. Nakaji, he showed me the CT scan and how my C1 was aligned - it was in a ‘normal’ position and not causing any compression or drag by itself, so we didn’t touch it.
He’s fairly conservative and methodical with surgery, has a strict approach of not doing any surgery that doesn’t absolutely need done, and has a unique focus on compression cases, he specializes in compression only and is pushing the field forward on that front. He’s participated in a lot of the white papers on the subject
So if I can ask you, you did not have compression at all? Did he still operate on you just to remove the stylohyoid?
Did you have the ct venogram with dr Mehta? What were your results?
I just had my venogram with Mehta, and im confused now more than ever. He says my jugular is only showing very minimal compression. And he just talked in circles.But I have all of the symptoms for vascular compression, bad in fact. Im anxious to hear from Nakaji if he will even see me now ( he is one who after my records review ordered the tests, w/o me ever being seen) I have appt in March but I was given the impression by Mehta that he may not even see me now. And dr mehta also gave me the impression the symptoms im having could not be from the stylohyoid alone, without vascular compression.
Im at a total loss of where to go from here. I have had numerous scans and tests, only thing shown abnormal was elongated calcified stylohyoid and engorged collaterals. Everyone seems to disagree if they are seeing a csf leak or engorged collaterals. I had a blood patch 2 weeks ago, with no change in any symptoms as of yet.
I really need an experienced dr to dive into my images, and put the pieces together wirh my symptoms. Im now critical; horrible pressure pain, fainting, seizure like episodes, jaw pain, ear pain, ear ringing and fullness, heart palpitations. Thats the shortened list.
Only things not tested for me yet are moving xray or upright mri for CCI, and DSM Myelography for CSF venous fistula.
Hang on in there and see what Dr Nakaji says first, then take it from there…if he won’t help then it might be worth sending the imaging you have to another doctor. It’s so frustrating when symptoms aren’t taken into account as well as what the imaging shows, but some doctors do @Cindyd
@Cindyd - I’m sorry your symptoms are so bad/debilitating at this point. You’re welcome to share your imaging here so we can give our non-medical but somewhat experienced opinions about what we see. 3D images are easiest for some of us to decipher. We know that there are people who have severe vascular compression & are not significantly impaired by it while other have mild compression & are bed-ridden. There seems no rhyme or reason for the way symptoms play out at times.
I wouldn’t worry about being dismissed by Dr. Nakaji until it happens. I think with your symptoms profile, there’s a good chance he’ll honor your appointment & at least have a discussion with you. If that doesn’t work out, we have several other doctors on our list who are excellent vES surgeons & most put far less weight on the outcome of a catheter venogram than Dr. Nakaji does.
Hi @Cindyd sorry for the delay. I did have quite a bit of compression positionally, but my body compensated in other ways. It was noted that I don’t have a ‘standard’ compression story, but I had significant symptoms around compression and pretty clear occlusion in certain positions.
Dr. Nakaji also likely has the strictest criteria around what compression means and is fairly selective. I also had a very large right styloid (6cm).