Trouble getting diagnosed (IJV Compression)

Quick background, I’m 28 and overall no underlying health issues that I know of. The past 4 years I have been having dizzy spells, jaw/ear with neck pain and stiffness. Went to an ENT to have it checked out. He said it could be TMJ or ETD. Treated for ETD with tubes and balloon dilation of the eustachian tube. After the operation the dizziness is chronic. Had the feeling of a stroke after the op and went to the ER for examination. They did a CT of head and neck with contrast and found no signs of a stroke and sent me home. On a whim I decided to pick up the images and have a look myself. While looking through them I found my SP and counted the frames it was visible. (14 frames left ,12 frames right) With information I could gather online that puts them roughly at 28mm (left) and 24mm (right). They are of average length. However after looking over them more I found what looks to be my IJV being compressed on both sides. Went back to the ENT with the CT disk but the report says nothing of IJV compression so he didn’t even look at the images on the disk. Told him my symptoms are worse after ETD op and he ordered an MRI of head and neck while referring me to an ENT at the U of Kentucky. I asked him to check my SP and he couldn’t feel anything.

Here are some images I took from the disk that have me concerned



These blobs expand to circles further down my neck

I am lost and feel hopeless. It feels like I know what’s wrong with me but I cant get anyone to listen.
Finding this site has been the only comforting factor in all this. This condition is rare and I understand why they want to pass it off for something more common. Hope I can find answers soon.

I’m new here too, but I think it’s worth finding a doctor who is recommended here and see if they will look at your scans. My experience with my local doctors is that they don’t know and don’t care to learn or help. Go straight to the experts. Time spent suffering is no good.

You can’t always feel the styloids, depends on the angle…I do agree that the scan images looks like there could be jugular vein compression, but we’re not doctors…good detective work though! The angle & width of styloids can cause symptoms too, so it’s not always the length which is the problem.
Dr Bumpous, U of L Physicians, 401 E Chestnut St # 710, Louisville, KY 40202, (502) 583-3687 https://www.uoflphysicians.com/ear-nose-throat is the only doctor that we’re aware of in Kentucky, would you be able to see him? If not then you could consider sending your scans to another doctor on the list as some do telephone appts. Another tip which has helped some members is getting in touch with the radiologist who read your CT & did the report, & asking them to re-read it & evaluate it for ES & jugular compression. Would that be possible?
I hope that you can get some answers soon!

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You’re in a tough spot. It’s the most aggravating thing to have done your homework & be pretty certain of what’s going on, but because you’re not a medical professional of some sort, your investigative work isn’t taken into consideration at all by those who are in the medical field. Doctors need to be better listeners to their patients & at least consider the evidence we provide for the symptoms we have when seeking a diagnosis.

Jules has give you good advice. If the ENT world fails you &/or the radiology lab is unwilling to review your CT scan again, seeing a vascular surgeon might be an idea.

I called the lab and they can only look at it again if the Dr that ordered it asks them to. My ENT has given up and said this is not ENT related. I’m going to my PCP tomorrow to show him the images and ask for a referral to Dr Bumpous at UofL. Wish me luck.

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I will pray for you tonight that you’ll get the referral you need. :blush:

Appointment went well, got my referral to Dr Bumpous and he is going to have the lab look over my CT again. I asked him to see if the lab sees bilateral IJV stenosis. I asked if he had ever heard of ES and he hadn’t. Feel less hopeless today.

That’s really good news, Jksk892! So glad you can keep moving forward. It’s great that your PCP is also asking for your CT scan to be re-evaluated. :clap:t3: :clap:t3:

Glad that you have a referral! Did you mean you asked your PCP if he’d heard of ES? It’s a good opportunity to spread the word if so…

Yes, I asked my PCP if he has ever heard of it. I gave him a quick overview of what it is. It was after he said he referred me and asked to have my scans looked at again. I’m starting to think this isn’t as rare as the numbers say. Misdiagnosed is what it is. My ENT was treating all the symptoms of ES but not looking into the possibility that they could all be connected. Just getting to a Dr that has some knowledge of ES is all I could hope for. I have yet to be diagnosed with ES but I’m hoping Dr Bumpous can give me some sort of awnser to my suffering.

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Yes, our theory on here is that it’s misdiagnosed too! It’s mentioned only in passing in med school, & taught that it’s very rare, so many doctors don’t even consider it, sadly. So hopefully your PCP will remember it if he sees anyone else with symptoms!