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. Lawton (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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