The longer I’m on this forum, & the more post op scans I see, the more I realize that even the best, most experienced doctors don’tt achieve the planned goal in every surgical case. We don’t know what goes into the decisions regarding how short to cut a styloid/stylohyoid ligament & move or remove other soft tissues during surgery. I expect there are factors unknown to the doctors themselves prior to surgery that contribute to those decisions.
I feel extremely sorry & sad for our members who don’t get good surgical outcomes & who need to continue searching for the right doctor to do revision surgery or whatever might be necessary to help symptoms resolve.
I am an optimist & try to see the silver lining during life’s challenges. I’m also a fan of the saying “What doesn’t kill you, makes you stronger”. That may not seem true while in the midst of suffering, but there are good things that can come from it. I have made some amazing friends on this forum whom I would have never known without having ES. I thank God for that.
I can see from your images that your styloids are very thick, @stuuke. I’m sure that plays a role in their contribution to your continued IJV compression in addition to their angle & length. It’s curious that one curves inward & the other outward.
I’m really sorry your first round of surgeries weren’t successful. I know this has been a drain for you financiallyl & hard on your family & business. I will pray for you to have wisdom regarding your next steps.
All that suggests that the root cause of your symptoms might not even be the IJV compression, but something in the abdominal area. There are various reasons for central venous compression, from being overweight (one of the common reasons) to having malformations/tumours/plaque.
@stuuke there are a lot folks that had their Styloid not fully removed at skull base and who happen to have residual compression and only felt their symptoms disappear after revision surgery. One of them is @elijah whose remaining Styloid was about the same size as yours. He only felt his IIH symptoms disappear after bilateral removal of the styloids at skull base. Below is his image after the first surgery. You can see the remaining Styloid is still compressing his IJV. The second image is the revision/second surgery that removed the remaining Styloid. Perhaps you can try Hackman who is known to remove both at the same time as he has done for Elijah if you only want to have Styloids removed. Similarly as I suggested you can try Dr. C & Dr Lo in NYC to remove both Styloid and shave C1 instead of stenting. I am afraid your stent might fail given the bony compression of Styloid and C1.
Here is his image after 1st surgery which left portions of the Styloid on the left side.
I could not agree more on this with @Isaiah_40_31. Dr. H is great doctor and has an impeccable record in terms of favorable surgery outcome but even the best of doctors can at times miss or for reasons unknown to us, leave some Styloid remnants. Perhaps facial nerve preservation or other plausible reasons. It is true that they are human beings as well who are performing multiple operations and can overlook certain things.
I think you need to share this finding with Dr. Hepworth to see what he says. Hackman does a lot of revisions bilaterally only for Styloid, not sure what the procedure for referral is. Similarly for Dr. C but the advantage for Dr C is his clinic does both C1 shave and Styloid removal. Don’t know what you need to see them.
@stuuke - It is a lot to take in, & I’m sure it’s shocking information for you to receive. Kind of like an unexpected punch in the stomach. Here you thought all was well w/ your IJVs & something else was going on. In that respect, perhaps you have some sense of relief that there’s nothing that’s been missed, just no recovery from the initial problem
I agree that Dr. Hepworth should be made aware of these findings. Because you know stenting & ballooning won’t help when the IJVs are still compressed, your next step to consider is revision surgery. I don’t believe either Dr. Costantino or Dr. Hepworth require a referral. It’s probably best to contact their offices to ask though.
