Need advice for VES

Hi All, I’m in need of advice on what to do in my situation. My journey started last summer with an MRI stating I had an AVM. A world-class neurosurgeon ruled out AVM and did two tests to confirm my styloid process is compressing my IJV by 60% and has created collateral veins at the back of my neck. However, the MRIs and CTs have come back saying everything is normal. I live in Texas and Dr Miller (ENT surgeon) has rejected my case and told me to see a neurosurgeon. I just saw Dr Hales (ENT surgeon) and at first he said he would do the surgery but then after reviewing 3D image, said my styloid is normal length and he didn’t see any compression, therefore he would not do the surgery. First appt with him, he said it was all in my head and everyone has elongated styloids. Second appt, he defined his opinion of ES and said the risk isn’t worth the surgery in my case and that I should see a neurologist. I’m at a loss of what to do. A world-class neurosurgeon is telling me there is something wrong and showed it to me on images, but a top-notch surgeon is telling me its all in my head, MRI and CT scans don’t show anything wrong, and I should see a neurologist.

Many of my symptoms have calmed down in the last month or so (probably because sleeping in recliner and doing vagus nerve exercises), and so I’m wondering if ENT is right - its just all in my head. A neurologist doesnt seem right though because of the compression. Do I keep pursuing an ENT surgeon for vascular Eagles? Do I just leave this alone and with each supposed symptom i feel just tell myself its not real? Do I go to a neurologist? I just don’t know what to do.

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Hi there,
I will have more time to respond tomorrow, but I was in a similar situation- my ultrasound and CTV were clear, but luckily my doctor knew better and ordered a venogram. The venogram showed significant vein impingement. The neurologist should be able to order you one- that’s the only way to know 100%. I’ve had multiple doctors tell me that CTs and ultrasounds are unreliable when looking for vein impingement.

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Hi Emma, so I had a vein pressure test done which confirmed the neurosurgeons’ suspicion when he did the angiogram (styloid compressing the IJV). This is what confirmed the compression, but the ENT supposedly looked at this imaging and found it normal. I dont think he read the neurosurgeon report at all and refused to read it. Is the venogram the same as an angiogram?

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@LoriBD - Yes an angiogram & venogram are the same thing though some people differentiate between the scan that measure the velocity of the blood through a particular vein as a venogram & one that measures blood velocity through an artery as an angiogram. When the speed (velocity) of the blood is faster than a pre-determined average rate it can indicate an occlusion in the vascular tissue being examined. The higher the velocity, the more closed off the vascular tissue is.

It sounds like you need to see a different ENT to get another opinion. Reading the neurosurgeons report should be a mandatory part of reviewing your angiogram. I find it unfortunate & perhaps presumptuous on the part of the ENT to have drawn his own conclusions from the results & neglected the report. I expect neurologists have far more experience understanding the findings since they routinely use those as diagnostic tools & ENTs don’t (or am I mistaken here?).

Here’s the link for our Doctors List so you can look for someone else who will take your test results more seriously. Sadly, we have not had doctors in your state be consistent in their willingness to treat ES so it may take you several tries to find someone or you may need to travel out of state if possible.

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I’m so sorry to just drop off like that- work has been so crazy I’ve barely had a moment. @Isaiah_40_31 said it much more concisely and wisely! But I fully agree- the angiogram/venogram is the most reliable test, and they should have a full report where that amount of jugular compression is measured. I know dealing with doctors who don’t “believe” you is the worst, but agreed that it is worthwhile looking into a different doctor. I had multiple doctors tell me that I just had anxiety and this was all in my head, but eventually I found a doc who really cares and you will too! It might also be worthwhile to ask the neuro-surgeon you saw if he has any preferred docs. In this community they all seem to know each other or at least of each other. Let me know if you have any other questions, sorry again for taking so long to reply!

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Thank you for responding again, no worries about work. I totally get it!! I have a copy of the angiogram report that states amount of compression and this ENT said nobody ever measures compression. I knew he was blowing smoke because of the numerous medical things I’ve read that give measurements. :roll_eyes: Ive left a message with Dr Hackmans office to schedule an appt but havent heard back yet. I’ll try again tomorrow. I have family in NC that are willing to help if they are in town.

@Isaiah_40_31 I thought the same, that the neurosurgeon is more believable than an ENT for the same reasons you gave, but with the high praise I read about Dr Hales, I sort of let him coerce me into thinking he was right for a bit, that its all in my head and neurosurgeon was wrong. This whole thing threw me for a loop. Are there any other good surgeons who are comfortable with the vascular type in the US? I’ve focused mainly on TX, NC and VA in the dr list, but havent looked at it exhaustively yet to see if theres any notes on who does well with the vascular type.

@LoriBD, Dr. Hepworth in Denver is our top VES doc. He’s done more VES surgeries than any doctor on our list that I know of. The frustration of trying to see him is that his ofc is understaffed, calls & emails aren’t returned, & he’s booked out a number of months for surgery & until March or April, I think, for an initial appt. which would be in office w/ his NP Allison Love who has been reported to be remarkable. If you choose to contact his office, you will need to persist until you actually talk to a live person. This can take a number of tries. Most of our members who’ve seen Dr. Hepworth have truly appreciated his diligence in making sure he has a clear picture of your whole situation before he does surgery. He also operates w/ a vascular surgeon so that if your IJV doesn’t open once the styloid is removed, the vascular doc can do a venoplasty right then.

I’m glad you’ve bee able to let go of the doubt Dr. Hales made you feel about your understanding of the neurosurgeon’s report. You have a good head on your shoulders!