@JGont - you can take the picture to share, but both Dr. Hepworth & his NPs are very good at seeing IJV compression in CT scans w/ contrast so you may not need it. Good idea to have it handy just in case there’s a question.
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Met with Dr. Hepworth today.
- SSCD on right ear, which he saw on one of my CT scans. Recommended to wait on addressing until after dealing with #2 if necessary.
- Left internal jugular vein is compressed and needs to be opened again. Potential on right as well. Got me on surgery schedule for late this year/early next year.
- Suspected MCAS
I have been prescribed blood thinners in the meantime to see if I can get some symptom relief. Very happy to have seen Dr. Hepworth and actually get some answers from a provider!
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I’m glad that you were able to see Dr Hepworth, and that he confirmed what is going on, although it’s a long wait for surgery…I hope that the blood thinners help in the mean time, they have helped quite a few members.
Will you be looking into testing for MCAS as well? We’ve had a few members who have that alongside ES, it would be good to find out about that before you have surgery.
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Hello @Jules, thanks for the sentiment, I am hoping the blood thinners help while waiting. I have a folloe up in 2 months from now with kne of Hepworths NP’s to see how it is going. In the meantime I will see a functional doctor for MCAS testing in May.
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@JGont - If you didn’t ask to be put on Dr. Hepworth’s surgery cancellation list, send a note through the office portal requesting to be added. We’ve had several members whose surgery dates have been moved up considerably that way.
Great that you got to see Dr. Hepworth & got some confirmation about your suspicions AND a surgery date!!
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Thanks @Isaiah_40_31, I am hopeful that it hells. Honestly the one symptom I have that I would saw my leg off to be rid of is the ringing in my ears.
Unsure if you know of anyone who has something similar on the site? It’s high pitched but oscillating (not in time with heartbeat), and is a half a second off between ears. Right is loud, left is lower. Then left is loud, right is lower. All in the span of a second. Driving me nuts.
Dr. Hepworth seemed to think it was due to the left IJV being so constricted it was causing blood to rush to such a degree, but I was unsure if this was still considered pulsatile if it was not in beat with heart. Something to bring up at follow up I supoise.
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Some of our members have had significant recovery from tinnitus, others have had reduction & still others have had no change. Unfortunately, it’s the symptom which has a most unpredictable response to surgery.
I also have had bilateral tinnitus since childhood so can empathize with what you’re experiencing. ES surgery didn’t help mine, but my current situation was caused by an inner ear surgery I elected to have to try to save my hearing as it was slipping away. It helped for a couple of years, but left me with loud constant tinnitus in my left (surgical) ear. Dr. Hepworth thinks there might be a remedy, but it will require another surgery. My husband isn’t onboard yet so in the meantime I am trying out a hearing aid in that ear which helps a little to distract my brain from the constant sound of the tinnitus.
I think the fact that you also have SSCDS could also be adding to the volume & tone of your tinnitus, so hopefully, between your styloidectomy/IJV decompression, & if you have surgery to alleviate SSCDS, your tinnitus will be dealt a fatal blow. 
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Thanks @Isaiah_40_31, I needed to hear that there was some hope! Hoping that you find relief with next steps as well, I was very impressed with Dr. Hepworth’s apparent willingness to see my issues through until I was somewhat back to normal, and yours too it sounds like.
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Just got my Ultrasound results back, have a follow up scheduled with Allison at Dr. Hepworths office in May. I am a little confused at the results, it seems to indicate that there is no compression, but I am unsure if I am reading this correctly. The cm/s seem high from what I’ve read on the site. If anyone has experience interpreting, I would be grateful!
EXAM: US Upper Extremity Venous Duplex Bilateral
INDICATION: Compression of the vein..
TECHNIQUE: 2D, color-flow, and Doppler study performed with spectral analysis. Valsalva maneuver performed.
FINDINGS:Right jugular vein: Base of neck 2.7 cm, sternocleidomastoid level 2.0 cm, carotid bulb 1.5 cm C1 1.5 cm at the foramen 1.5 cm. The velocities at the base of neck are 115 and at the sternocleidomastoid 103 cm/s. There is however no stenosis of the vein distends normally. The velocities are normal at the C1 level and foramen.
Left jugular vein: Basic neck 1.1 cm, sternocleidomastoid level 1.0 cm, carotid bulb 0.9 cm, C1 0.6 cm at at the foramen 0.6 cm. The velocities at the base of neck measures 106 cm/s. There is no stenosis however in the vein distance with Valsalva maneuver.
IMPRESSION:
1. There is no venous stenosis or thrombosis. There is a dominant right jugular venous system
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I actually went into the images and got the measurements and cm/s at all the locations, which the report does not list. Seems like there is a sharp drop between base of neck and carotid, and then an increase back at the foramen. No clue if this is indicative of anything or not.
@JGont - When I had that done, Dr. Hepworth told me that anything higher than 50 cm/s could indicate compression. It’s interesting that your higher readings are more at the base of your neck. Do you have any symptoms of TOS (Thoracic Outlet Syndrome)? The SCM has also been known to cause IJV compression is some cases so that’s a possibility for your right IJV which was noted as being dominant.
Have you had an appt. with Alison previously? Where did you get your IJV ultrasound done? I’m sorry you weren’t booked for a follow-up immediately after your US if you had it done in Denver. It’s frustrating for you to have to wait so long to get an answer about the significance of your US results.
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Hello @Isaiah_40_31, I have the dizziness and neck pain, but unsure on other symptoms.
My appointment was at Health Images in Denver. I had called and msde sure they had done US for Dr. Hepworth before and also confirmed with Alison (via message) thst they had the protocol.
I have not seen Alison yet, only the initial appointment with Dr. Hepworth. I have a follow up with Alison in May to go over these results.
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Maybe the dizziness is being caused by something else then… vagus nerve compression can affect BP, so it could be that, or possibly the vestibulocochlear nerve. Some members have tried vestibular rehab exercises to retrain the brain…
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Hello @Jules, I think the dizziness is likely from the SSCD Dr. Hepworth thinks I have, but vagus nerve would make sense too! I am hoping to know more at my next appointment, kind of at a loss for how to proceed until then. I have started brilinta in the meantime per doctors instructions.
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@JGont - I hope the Brilinta helps reduce your dizziness. I hope you can get a diagnosis one way or the other re: SSCD so you know how to proceed. Sometimes it’s a real puzzle as to what’s causing what!
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Sorry, I forgot about the SSCD…I hope you are able to get more info soon !
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You vertebral arteries are also kinked. When you look up, you stretch those pivot points even more and could be contributing to symptoms. The artery should be one fluid pipe from C1 down the spine. Yours twists and kinks as it passes through C2, on both sides.
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Hello @avarj, thanks so much for pointing that out. Certainly something I want to bring up on my next appointment with Dr. Hepworths team. I hope you are doing well!
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You have very “snake-like” vertebral arteries, @JGont. The colors in the imaging even make them looked striped. 
I hope that’s something Dr. Hepworth can take care of or at the very least refer you to someone else who can.