Hi there friends, little update after surgery. I had my 3 month checkup with Dr Hepworth after my styloidectomy and jugular decompression surgery. He says there is still a kink and thinks it’s due to a muscle spasm so I need to work on getting that to release. In the meantime we will plan on a check up appointment in February and he would like to get me on the Hawaii schedule with a doctor that he teams up with in May for a transverse sinus stent. I’m wo during if someone has this doctors name so I can start working on seeing if my insurance will cover him and in Hawaii? Has anyone had this problem also? And if so can you tell me a bit about how the surgery and recovery went?
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The doctor who’s name you want is Ferdinand Hui - https://www.queens.org/providers/2225/ferdinand-k-hui/
I think someone on our forum has had a transverse sinus stent, but I couldn’t find the discussion. You can use the magnifying glass icon in the upper right of this page & type in transverse sinus stent & scroll through the discussions that come up to see what you can find.
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Thank you so much! I appreciate your response
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He said the exact same to me. That my jugular was now spasming. I do not know why he thought that. For what its worth, he told me originally has well my transverse sinuses would need stenting. That was not the case. You do not have to go all the way to Hawaii if a stent is needed. You will need to get a new cerebral angiogram/venogram as everything has changed after surgery. There is no way around that if he thinks you need a stent. Hopefully he ordered this for you prior to your surgery with him so you can see the difference before and after. Its done in the hospital and not fun. He usually recommends just a few interventional radiologists to do it, one being Hui but I know how long the wait list is to see him, but he does phone consults. I had mine done in NY. I now have to get a new one as surgery was not helpful and I am still very compressed on surgery side. I hope you got post imaging as well and not just his ultrasound. My post op imaging showed my issues. I do not know where you live but Hawaii is not easy to get to and there are other options available. Be sure to get multiple opinions on any stenting as once you have a stent, theres no going back.
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I’m glad that he’s still helping you and has a plan, @Brandy 's suggestion of getting another opinion at least sounds sensible as like she says, a stent is permanent.
I might be wrong, but I thought Dr Fargen in NC also worked with Dr Hepworth & does stents, but that might not be any easier to get to than Hawaii?
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Fargen did my decompression and yes he is a neurosurgeon who does stents in Brian and jugular. I have one in jugular. When I saw Fargen in July 2024 he originally said if I resolve my jugular compression my sigmoid sinus may open up more. He felt like the jugular compression caused the sigmoid sinus issue. I had a Venogram and angiogram done by him pre decompression and post. Things can change. I advise another opinion as well.
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My right IJV was still flattened at C1 after a styloidectomy. A vascular surgeon at St. Michael’s Hospital in Toronto did a dynamic CTV angiogram to view the blockage followed by an angioplasty which opened up the vein without having to do a stent.
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Oh wow, thats great that it opened back up. Thanks so much!
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It was Dr. Pereira at St. Michael’s Hospital. He pioneered the dynamic CTV angiogram and said it is only done at St. Michael’s.
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Oh boy, seems all our issues need a special doctor doesnt it. Its so exhausting. Thank goodness we have eachother to help guide eachother.
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I’m glad your angioplasty helped @Laurah 
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Thanks for that info @Kmoore464 , and how are you doing now?
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@Brandy, I’ve forgotten - have you considered having or have you had your IJV ballooned to see if that would help it open up? As I’m sure you know, that would be a good option prior to considering something as invasive as a stent.
I’m still interested in knowing what you learn from Dr. Costantino when you meet w/ him. Do you have an appointment yet (sorry forgot this, too).
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It’s hard to keep up with me, lol!! I meet with Dr. Gordon on 12/23. He is who Dr. Costantino referred me to for another venogram. Im not so sure it is the vein not opening up. According to Dr. Hepworth and his ultrasound, the flow is fine. I don’t know how much I trust that ultrasound though. I think the issue is with C1. According to Dr. Costantino, I am still very compressed. Did Hepworth not remove enough? Did he miss the compression at C2? Was it how he does the C1 shave and not how Costantino does it? In hindsight, I probably should have had the surgery with Costantino as he utilizes a Neurosurgeon. I got the feeling that Dr. Hepworth didn’t even review my venogram based on what he said. It showed I was severely compressed at both C1 and C2. When I brought this op in September to Hepworth, it was like it he heard it for the first time. So discouraging. I won’t know much until next year and after the repeat venogram. I am not looking forward to it. Thanks so much for checking in!! Happy Holidays!!!
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So frustrating for you, especially when you were so careful to get as many consultations and as much testing as possible to make an informed choice…very unlucky, I hope next year you’ll be able to get some treatment 
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Thanks. It just goes to show you that anything can happen. Hopefully, Dr. Gordon’s venogram will give us more useful information. I will still be a big advocate of getting multiple opinions and as much testing as possible, including the venogram. I just had a brain pet scan on Friday that Dr. Ruhoy ordered. I am also in the process of getting the lymph nodes biopsied from St. Lukes from my surgery in Denver. I never thought they would still be viable, but they are. They were reactive, bulky and fibrotic. I have abnormal T cells and my hematologist thinks they need to be tested. I believe they only test for cancerous cells when biopsied. My body is fighting something and I have an immune dysregulation.
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@Brandy, I’m sorry for whatever happened (or didn’t) during your first IJV decompression surgery. We’ve had some members who went to other doctors for revision surgeries after initial decompressions failed. There’s been some back & forth between Dr. Hepworth & Dr. Costantino, too. That’s to say that all doctors are in a medical “practice” which means they are all still learning with each diagnosis & surgery they provide.
It’s tough that you need another venogram, but if it provides the answer as to what is remaining to cause your IJV compression, then it’s worth it. Frustrating that your venogram may not have been thoroughly checked before you had your surgery. Be assertive about making sure it’s well gone over before the next one if that’s the step that follows.
I once had a doctor to tell me that if I have a poor outcome from a surgery or procedure, it’s good to go back to the surgeon & discuss the outcome & what could have been done differently if there’s been further testing that demonstrates what was lacking in surgery/procedure because doctors learn from their patients. It would be good for you to do that if you find out what’s still causing your compression so Dr. Hepworth can learn from you.
I hope your lymph nodes are clear of cancer so you don’t have one more thing to be concerned about.
Happy Holidays back to you!
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I hope that they can find out whatever is causing the immune dysregulation, so many issues to keep trying to get answers for!
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