Has anyone had dural venous sinus stenting after bilateral styloidectomies for IJV compression? I was told today I may need to see Dr. Hui in Hawaii later this year. If you’ve been in a similar situation I’d love to connect.
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I’m very sorry that your decompression surgery didn’t do what you/we hoped for you & you’re looking at potentially needing another major surgery.
I did a search for posts re: venous sinus stenting on our forum & only found one discussion from 2021 started by another patient of Dr. Hepworth’s. I don’t think it will be super helpful, but you can read it to see if there’s any new information to glean.
I recall that @Eagle1 ended up being diagnosed w/ SCDS (Semicircular Canal Dehiscence Syndrome) from the high IH she had & was referred to a doctor at UCLA Med Ctr, but I don’t remember if she ever posted after that.
My left styloidectomy from Hepworth failed and I am much worse. He has asked I see someone, like Hui, to try and figure out what to do, but honestly, I am very worried about stenting. I would certainly do your research and make sure it has a good chance of helping.
He has tried to get me into several of the experts, Nakaji, Martenez, Hui, Fargen, without success.
I am praying for you, as I know what your facing.
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If it is closer, you may wan to check out Dr. Athos Patsalides. He is in NY and an expert in this. However, he doesn’t like eagle syndrome surgeries, but knows a lot about these issues.
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Sorry that you’ve potentially got to have stenting done as well, that’s rough, hope you can get some answers & resolution from any further testing/ treatments 
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I’m afraid I don’t have advice, but Hepworth told me I may need that as well in the future. Please keep us updated and let us know how it goes. Wishing you the best & most successful stenting if you go that route.
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@Nikkimm & @jsk123 - From what I understand, stents inside the skull are safer than in the neck because they’re less liable to move & cause new or worse problems. Stenting the IJVs or other vascular tissues in the neck is riskier because of neck mobility which creates a greater risk of IJV stents moving & causing further occlusion rather than staying put & doing the job they were intended to do.
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Thank you for posting this video @BirdsOfSore. I didn’t watch the whole thing but it looks to have some great information regarding intracranial stents.
How are you doing?
@Nikkimm It seems like one of the reasons people are still symptomatic post decompression is that there is still a stenosis somewhere else in the venous system. An interventional radiologist like Dr Hui does stenting but stenting procedures are far more common than eagles decompression so there are likely a lot more of those type os docs to consult with. That being said, it’s great to work with someone who really knows and understands venous congestion. That being said, if I needed stenting I would go with Dr. Matt Amons at UCSF. Wishing you the best on your journey!
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How do you know it failed?
The symptoms are 100x worse, i developed McAS or it made it worse. Dr. Hepworth did testing that shiws it is worse than before the surgery. Now i am completely disabled. It was a huge mistake. Praying for everyone that they have better luck.
Don’t give up. Did you get multiple opinions prior to surgery? Did your imaging show there was clearly compressions and issues going on? I know this is a very stressful thing to be dealing with,but please don’t give up and know you have a huge network of supporters.
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What testing showed worsening issues? The jugular ultrasound? Is he suggesting stenting?