Here are images from one of the CT’s. The left side was removed by Dr. Hepworth in 2024, but I actually got much worse after the surgery. He recommended stints, but I refused those because of the failure rate. I am almost completely homebound and unable to do anything. I am considering one more try to see if this can be fixed.
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I’m sorry that you’re so much worse, & I agree that stents should be an absolute last resort…
I can’t see any images though, have you been unable to attach them?
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No, I was unable to see how to attach the images.
Someone replied to your post.
| Jules
May 26 |
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I’m sorry that you’re so much worse, & I agree that stents should be an absolute last resort…
I can’t see any images though, have you been unable to attach them?
@harrisonboy - to attach images you can either drop & drag them into the text box from your computer desk top, or you can upload them using the underlined up-arrow at the top of the text box when you write your next post. Please let me know if one of those approaches doesn’t work for you.
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@harrisonboy do stents have a high failure rate after decompression surgery? I know they do prior to decompression.
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Yes. Dr. Fargen has written about the issues with the stints. Even after surgery, as in my case, I have severe compression and the stints are not designed for the jugular but for other parts of the body and they can collapse under the pressure and cannot be removed later. It can work, but I have a friend who had stints in both sides, and they both are migrating after they collapsed. There is nothing they can do to help her.
Your poor friend, it is a worry having these done…
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Hi, I am so sorry the surgery failed. Have you also considered Dr. Costantino? From your images, it looks like the C1 transverse process is a big part of the compression, and I know Dr. Costantino takes that much more seriously and resects a larger section instead of just shaving. Best of luck with everything!
Oh, and Dr. Costantino has a really good video explaining it all which I found posted here (thanks to the original person who posted, I found it very helpful!)
Anyway, here is that video: https://www.youtube.com/watch?v=1xFzBp0oHwA&t=648s
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He was the first person talked with when this started years ago. He said i had the worst case he had ever seen and he was afraid to do surgery on me because he thought I also may have a spinal csf leak. He said surgery would make me worse and I did get much worse after the surgery with Hepworth. I don’t know if I have a csf leak or not. I have been everywhere and I am near bead bound now. I have sent everything to Dr. Liu because I am believing I need a neurosurgeon to look at not only VES but also my neck and spine.
Thanks
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That makes a lot of sense and it sounds like Dr. Liu is a great person to help sort it all out. I also know Dr. Jenkins in NYC looks into both CCI and jugular vein compression and have heard good things about him as well (just in case you want a third opinion). Dr. Jenkins office does telehealth and will look at all your images for a very reasonable fee. (I think $250).
I hope you can get this all sorted out - it is so complex and hard!
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@Jwshackel - Thank you for sharing Dr. Jenkins name w/ @harrisonboy. His struggle for help has gone on for a long time now. Hopefully he’s on the right track for a solution now either from Dr. Liu or Dr. Jenkins or maybe a bit from both!
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I have submitted everything to Dr. Liu for review. I am unsure how long it takes for a consultation, but I know he is only available one day per week to look at records, office visits, consultations. I have spoken to people who he has completed surgery on and they have indicated he is very knowledgeable and looks deeper than most ENT’s for causes. I am also providing a link where he diacusses his appeoach and shows actual cases he has solved. Hopefully this will help other. I believe his lecture starts at 16:30 of this video. https://www.youtube.com/live/nGFDx88RvnM?si=ZaqIaa-AsqnMDnwg
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Thank you for sharing that info, I’ve added the link to the doctors list!
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I’m glad you-'ve gotten everything sent to Dr. Liu, @harrisonboy. I hope you hear back from him sooner than you might expect.
I watched Dr. Liu’s video presentation & was impressed by his knowledge & intrigured by his comparison of two approaches to IJV decompression + his explanation of why he prefers one over the other. With this knowledge of how he approaches the surgery, I hope he will take you on as his patient so that you can benefit from his expertise in doing successful styloidectomy/IJV decompression surgeries.
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