Obviously this will be a question for Dr. Patsalides, but for those of you who have done the BTO venogram for jugular compression or understand how it works: If my daughter’s left jugular is truly unsalvageable as Dr. Hepworth suggested and we feel may be accurate, and they blow up a balloon on her right side, where does that leave her during the procedure? It feels potentially quite dangerous.
@mogulmama I have not had a BTO venogram but I did have an IR venogram with balloon occlusion testing. The balloon inflates to disrupt the blood flow trying to identify the source of my pulsatile tinnitus. They give a blood thinner through the catheter to prevent blood clotting while the balloon is inflated and the blood flow stops momentarily. I also did not feel the balloon expanding although I was able to feel the catheter moving through because I was wide awake, which your daughter may not be for this procedure. I hope that is useful.
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I don’t know enough to comment on this, but hope @Chrickychricky has reassured you, and that you get answers from Dr Patsalides too… Let us know how it goes for your daughter if she has the procedure please? 
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Thank you both!
< sent in transit >
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Hi there! I am not an expert by any means but I had the venogram you speak of with Dr. Patsalides. He was truly the key to me finally getting my diagnosis of VES which led to my surgical intervention. My IJV on the right side was completely occluded and the left was almost as bad. I had my styloid on the left side taken down almost to the skull base (the protocol at the time), a bunch of ligaments moved around, part of my transverse process removed and my C1 shaved. After doing the left side, I had resolution of a great deal of my symptoms. I had to have an aortic valve replacement four months later(unrelated), so we held off on the right side. By the time I could address it, the right side had completely shut down. Much to my surprise, my surgeon said it will not magically come back after surgery so we will not be doing the right side. I will however be doing a revision on the left to take it down to the skull base as that is still compressing the IJV and it is now the protocol. This will be a same day surgery as the hard parts are already done. Needless to say, I made it through the venogram with an almost completely occluded IJV on one side and an aortic valve that was only functioning at 20%. The test was done at North Shore and it is a teaching hospital. There were students in the room, I was awake and surrounded by huge screens that displayed everything. It was extremely interesting. Dr. Patsalides is wonderful and I am so blessed to have found him. Your daughter is in great hands and you will learn so much about her condition from him. He is very knowledgeable and extremely kind. Best of luck!
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Heartfelt thanks for taking the time to explain all that. It does feel very reassuring! It sounds like you are functioning well again even without the use of the right jugular? That is my hope, at least!!
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Honestly I don’t even notice anything on the right side. I have some symptoms returning but it is all left side-except tinnitus which can sometimes be both sides still. It is not anywhere near as frequent as before and not as strong. I do need to go for a tune up on the left side so hopefully any symptoms I have will go away for good. I was almost completely symptom free for over a year and a half after the last surgery. Very hopeful. My surgeon was Dr. Constantino btw.
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Thank you for coming back to share your story, @Mjrmunch! I’m so glad to learn that all you’ve been through has provided a good outcome for you, but am sorry some symptoms are sneaking back in. I hope Dr. Costantino is able to figure out what’s going on so he can help resolve them again & you can move on with a more symptom-free life. 
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I’m sorry too that you’re getting symptoms back & need a revision surgery, have you got a date?
I don’t have a date yet because my husband is having some surgeries so I have to wait a bit. I am confident that I will achieve symptom relief.
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@Mjrmunch - A positive mindset does a world of good in the realm of healing. I’m sorry you have to wait but it’s very selfless of you to take care of your husband that way.
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Sending you a hug, you must have alot on your plate
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