What does this mean please

General
1

Just got this report saying jugular compression was not resolved but I’m unsure if it’s telling me the styloid is still compressing the left side or not, I have had surgery on the left side and it is now only 2.5cm long ???
It seems like depressing news to me but hopefully a stent might fix it, I see the specialist next Wednesday so I need to stay positive until then ??

  1. Continued moderate compression of both internal jugular veins

between the styloid process and anterior arch of C1 in the neutral position. Note that the resected portion of the left styloid process
was inferior to this area of narrowing. The physiologic/clinical
significance of this finding is uncertain and can be seen in the absence of symptoms.

2

A 2.5 cm styloid is the average length of a normal styloid thus your surgeon didn’t cut your styloid back all that close to your skull base, & that may be why you still have IJV compression i.e. the styloid needed to be cut back beyond the transverse process of C-1 to allow your IJV to open which would make the styloid 1 cm or less in length. In some cases even when that is done, the TP of C-1 is still problematic & needs to be shaved a bit, or if possible, the IJV can be moved slightly away from C-1 negating the need for the shave.

If you’re asymptomatic then moderate IJV compression may be inconsequential for the time being as your body probably created collateral veins that are helping w/ the outflow of blood from your brain. If you’re still having symptoms then it’s certainly worth discussing this with your surgeon. I’ve totally forgotten who did your surgery. Please remind me who it was if you’re ok w/ doing that.

3

Dr Ondrey in Minnesota but I will be his last Eagles Surgery, my BP has improved since my surgery, and the vertigo has gone away but I still get pressure headaches on lying down and standing up, which stinks, my right styloid was 4.8 cm in my last ct and now he read it as 3.5cm I know it didn’t shrink lol I’m not sure if I want to go through with the right side surgery or see a different surgeon, but as there is no more in my state I’m not sure my insurance will cover out of state, I’m hoping Dr Cha who I see next week can help me find a solution, to be honest I’m kinda out of energy to fight right now, hopefully she will be encouraging and have ideas of what to do next, feeling drained

4

I’m glad for the positive changes you’ve had, @Millymay, but am sorry for the residual symptoms. I expect those pressure headaches are because your IJVs aren’t opened up all the way. Some members have found sleeping w/ the head elevated helps reduce those. Also, getting an Rx for a blood thinner such as Plavix might help, too.

If it’s Dr. Ondrey who’s given you 2 different measurements for your remaining styloid, I’d guess he measured wrong at least once. If you see him again, I’d ask for him to measure again just to check, but then maybe it’s a moot point. You know it’s elongated & what really matters is that you’re having symptoms from that.

If you decide you want to try an out of state surgeon, Dr. Old has received great reviews from one of our members, & we’ve heard of a novel approach he used to stop styloid regrowth in someone who had them come back 3x. He does operate to decompress the IJVs so you’d have a better outcome if you saw him. If it was me, I’d avoid a second surgery w/ Dr. Ondrey just because he’ll likely repeat the same surgery & leave your other IJV compressed as well. I’m so sorry this has happened to you. I know it’s been quite the process to finally have the surgery.

•Dr Matthew Old, Otolaryngology, Ohio Sate University, James Cancer Hospital, Columbus (one surgery that we know of) *Dr. Old reportedly used a novel approach on a FaceBook ES Forum member where he removed styloid regrowth to the skull base & packed the skull base w/ cadaver bone (May 2021).
https://cancer.osu.edu/find-a-doctor/search-physician-directory/matthew-o-old.

These doctors in Nebraska, which is closer to you, have also gotten good reviews from our members who saw them, but I don’t know what their experience is like for vascular ES.

•Dr Daniel Lydiatt, University of Nebraska Medical Center, Methodist Clinic . Clinic 402- 559- 1700, Office 402- 559- 7775, Methodist Clinic 402- 354- 5890 https://www.md.com/doctor/daniel-lydiatt-md
•Dr William Lydiatt, 8303 Dodge St., Omaha, NE, (402) 354-5244, Dr. William M. Lydiatt, MD - Omaha, NE - Head and Neck Surgical Oncology, Otolaryngology - Schedule Appointment
•Dr Coughlin, Methodist Hospital, Omaha (Head and Neck Oncologist, has done external skull base surgery 7-10 times, and steroid injections) https://www.mhsdoctors.com/physicians/11116003

5

Dr Ondrey is good at what he does and he told me he was only comfortable taking it back to its original size, I was just keeping my fingers crossed that it would be enough, the report above is just from whomever reads ctvs neither my specialist or Dr Ondrey have seen it yet, I have appointments with them both next Wednesday to go over things, thank you for all your help, I’m definitely doing better but I still can’t stand up for long, or move very fast, so I definitely need to try something different

6

If I’m going to have to travel out of state I may as well see one of the top guys, which one do you recommend for vascular issues?

7

Dr. Hepworth (CO) first, Dr. Costantino (NY) second & Dr.Nakaji (AZ) third. Dr. Hepworth isn’t taking new patients until next year, unfortunately, but the others are taking new patients now. Dr. Lawton seems a bit pickier as to whom he’ll see (that’s why I put him 3rd) & Dr. Costantino is relatively new to our list but has already helped several of our members.

Someone recently noted that Dr. Cognetti ¶ is beginning to be more aware of vascular compression & is starting to do surgeries to help relieve it. In my opinion, if you want to see him, you should have a discussion w/ him about this to find out if the information is correct. He does video consults as does Dr. Costantino. Dr. Hepworth only does a video consult after a person has had an initial, in-person appt. w/ his NP. I don’t know what Dr. Lawton’s modus operandi is.

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8

So sorry that you’re still getting symptoms, that’s rough after surgery :hugs:
@Isaiah_40_31 has given you some good advice, I can’t add much more but just to say I wouldn’t rush into having a stent put in- if there’s still compression then it may well not help & could even collapse, whatever’s causing the compression needs to be sorted first.

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9

Hello, just wondering if he told you that he is no longer doing eagle syndrome surgeries? He did my left side n 2019, but now I am having symptoms on my right side. His office said he would see me, so just curious on the statement that you would be the last and if I should start looking for other doctors.

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10

@Abby4Paige - We find that doctors come & go & sometimes come back as far as doing ES surgeries goes. Perhaps Dr. Ondrey is back to doing ES surgeries? It’s worthwhile keeping your appointment if you made one. If he isn’t doing ES surgeries anymore, we can certainly help you find another surgeon though you may need to travel to see someone experienced.

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11

@Isaiah_40_31 I just got my referral from my PCP and called for an appointment with Dr. Ondrey. The scheduler said he is no longer providing services for Eagles Syndrome. Since I am a past patient, she is going to send a message to his team to see if he will still see me or who he is recommending. I will update you when I hear back, but it looks like for newly diagnosed ES, he is no longer taking appointments.

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12

Thank you for the information @Abby4Paige. I hope he’ll see you & operate on you as in the past so you don’t have to start over with another doctor. Thank you for your willingness to update us with what you learn when you hear back from his office. I’ll take him off our Doctors List.

Here’s another doctor we have on the list for your state, just in case…
•Dr. Henry Chang, 401 Phalen Blvd #101, St Paul, (651) 254-7502 https://www.healthpartners.com

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13

When he did my surgery he told me I would be his last, he wanted to retire, he did a good job of my surgery but only removed one cm of my five cm styloid so it really didn’t help much, I ended up having another surgery with Dr Constantino and Dr Tobias in NewYork, they removed the remaining styloids and some of my C1 as it was all compressing my jugular vein

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14

Thank you so much for the information. I just got a call back and in fact he is done doing anything with Eagles Syndrome or surgeries in general. I am not sure where you are at, but how did you navigate insurance for going out of state?

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15

@Isaiah_40_31 Thank you for the information for Dr.Chang. I am waiting for a call back. I am wondering if it would be beneficial to ask for an updated CT scan since mine was back from 2019 with having to start over with new doctors.

16

I’m sorry that it doesn’t look like Dr Ondrey can help you again- I do think that an new CT might be a good idea, and if you can have it with contrast that would be a good idea as you mention feeling like you might pass out sometimes. CTs can be done dynamically, ie with your head in certain positions, & if you get this sensation with your head turned, then you could ask if they can do the scan like that- although alot of places won’t do this…

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17

If you want a dynamic CT w/ contrast your doctor will need to order it for you as asking for those things once you’re at the radiology appointment will be fruitless. They’ll tell you those orders need to come from your doctor. I agree w/ @Jules that at the very least you should have a CT w/ contrast to look for vascular compression due to the symptoms you have now.

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18

@Jules @Isaiah_40_31 Thank you for that recommendation. I will connect with my PCP and see if she is willing to order that for me and start the referral process to see Dr. Chang. He is out of network for me so I will also call insurance to see how all of that works. So thankful for all of your valuable insight. I know finding someone else that even treats ES is a challenge. I am not sure how experienced Dr. Chang is with this surgery - how do you compare the risk of seeing someone that has only done a few surgeries vs waiting to see someone who is highly experienced? Just to keep my options open, what other outstate surgeons would be recommended?

19

If you do end up having some vascular compression (carotid or jugular), your options are more limited especially with jugular compression as only a few doctors on our Doctors List do internal jugular vein decompression surgeries w/ styloidectomies. One who does both vascular & non-vascular ES surgeries is Dr. Cognetti in Philadelphia but he’s booking into August now for an initial consult. He prioritizes his cancer patients over ES patients thus the long wait to see him. Carotid compression is usually taken care of just with a styloidectomy whereas IJV compression often occurs between the styloid & C1 vertebra so very close to the skull base thus it’s a more complex surgery.

I would opt for a surgeon with more ES experience even if it meant traveling out of state, however, some doctors, though they haven’t specifically done a lot of surgeries for ES have done a lot of styloidectomies for other reasons so they do have good experience in that department. The key is finding someone who uses the transcervical approach (through the neck), monitors the nerves during surgery, & will cut your styloid as close to the skull base as possible.

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@Jules @Isaiah_40_31 You are both so great!. Thank you for putting up with my many questions and offering such detailed answers. I have requested a CT with contrast from my PCP and a referral to Dr. Chang. I appreciate you!

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