Morning!
I just wanted to share my thoughts and experience on my journey thus far and what I have personally come to believe.
I do not have ES, but Vascular Outflow Obstruction. Some may say this is a form of ES, but Drs I have met with it call it another term. My C1 is involved.
I have met with 3 of the recommended top surgeons in the country. Annino, Costantino and Hepworth. I am very analytical so I like to do as much research and get as many answers as possible before diving into anything.
What I have discovered is that patients are not getting as many opinions as they should. Not sure if this is an insurance issue, money issue, or both. They are also not getting as much testing done as they should. I am hearing and reading about many failed surgeries, revision surgeries or surgeries that were not even needed.
After reading up on Fargen (I was referred to him for Venogram) and his paper he put out, viewing the webinair plus my recent visit with my interventional radiologist, many surgeries are being overdone without enough testing and many do not get better.
From what I understand, the venogram is the ultimate tool to determine if surgery will be a success. You cannot rely on imaging alone. I cannot tell you how much that was recently drilled into me. The pressure gradients are extremely important in determining one’s outcome for a successful surgery. Hepworth has referred me for this. This is a risky surgery with a long recovery. I would be very leary of any surgeon who wants to proceed with surgery without having the results of a venogram first. I have a surgery date. However, I may postpone it until I get my venogram done. Some of the better surgeons will not even perform surgery unless you have the venogram.
I understand everyone has different needs and circumstances. However, I have already had one unsuccessful spine surgery. The risks are far greater not to have all the answers prior to surgery.
I agree that testing is ideal, I think though for many it’s a fight to get diagnosed even with ES with health care systems (whatever country members are in, all seem to have their failings!), let alone be able to convince doctors to do more testing. And obvs insurance can be an issue in the US. Plus the top doctors have very long waiting lists, and not even taking new patients for now, so it is a hard choice…
Very pleased for you that you’re getting everything done that you can, and I hope that if you decide to go for surgery it works for you 
I agree. However, it’s not impossible. I am a testament to that. It’s a grueling process.
Thank you for sharing your thoughts, @Brandy. What you’ve written does make a lot of sense, but I also agree w/ @Jules. Not everyone has the financial resources/insurance coverage or ability to travel widely to see the best doctors so those who don’t have $/good insurance, or can’t travel far, have to make the best decisions they can with the resources available to them.
I very much agree. However, I think there is many variables to this. Those who face limited resources due to limitations with insurance or funds, may end up getting complications or revisions which only end up costing the insurance companies more in the end. I have also seen this with people who travel near and fear with unlimited resources. They or the Drs. are just not getting as much testing. I know personally, Dr. Annino did not want any additional testing for me nor did he even bring up a venogram. I did not even have to get in a plane to see him. He was a quick car ride! It was a red flag for me. I am just stressing, to be your own best advocate and ask questions. Be the CEO of your own body.
Thank you for this. Although I have very obvious symptoms, I still feel that I would be much more confident in surgery if venous outflow obstruction (VOO) was empirically confirmed with venogram.
I believe dynamic catheter venography to find the pressure gradients is the gold standard to find the exact site and degree of compression. For me it’s very likely that the jugular vein is compressed between the styloid and C1, but I intend to have this confirmed via testing before proceeding with surgery. Thankfully my surgeon seems very open to this approach.
My surgeon also said that dynamic CT venography and even ultrasound can be performed to confirm venous outflow obstruction. Kjetil Larsen has written that there is a particular kind of ultrasound called a volume-flow ultrasound, and the ideal flow rate combined for both veins need to be 900 ml/min, and VOO can be confirmed if the flow rate is less than that.
Dr. Hepworth confirmed the obstruction via his jugular ultrasound protocol at the C1 transverse process. However, mine is so severe that it was pretty evident on imaging.
Hi @Brandy. I have an appt w Dr. Hepworth in March 2024. My Kaiser neurosurgeon wants to order a venogram to help Dr. Hepworth. I speak to my Kaiser doc later this afternoon on a ph. appt. It is my understanding Dr. Hepworth has his own protocol and that maybe this venogram done by Kaiser will be for naught. I loose Kaiser insurance at the end of the year and go to another HMO, Western Health Advantage. I have several calls into Dr. Hepworth’s office since last week but none have been returned on the matter. Any input you can give would be greatly appreciated. My gut says hold off on the Kaiser venogram. My brain says take any and all testing they will give me before the end of the year when the insurance expires and I have to start all over again with Western Health Advantage.
Hi,
Dr. Hepworths office is not good at communication. It’s been this way for a long time so prepare yourself. I’m still waiting on them to get authorization approved for imaging they ordered 9 weeks ago.
I would hold off on Kaiser. Chances are you would not get this approved or scheduled in 2 weeks. Almost impossible of that happening. He also prefers only certain interventional radiologists perform this test. He referred me to Fargen and Hui. I live in Connecticut and we finally settled on Patsalides in Long Island. I could have it locally, but again, you have to be sure you have a very knowledgeable Dr. doing this. It’s not something you want done wrong.
Hi @Brandy. Thank you for the advice and information. I will consider myself lucky then that I am on the books for Dr. Hepworth period.
Dr. Ji from Kaiser Sacramento called and was willing to work me in before the end of the year and made light of the procedure. I understand this is because of his familiarity and confidence with the procedure as it is routine for him and was very thankful he was willing to work me in. We decided to hold off since I heard from a member that Dr. Hepworth’s protocol for suspected VES begins with an ultrasound and if that’s inconclusive for flow rate, then a venogram would be ordered. I quite liked that conservative approach.
I heard yet from another member that Dr. Fargan is not accepting cash payments these days for those of us who have HMOs, no insurance, or other insurance issues.
I’m glad you found someone willing to work with you but 9 weeks is no good. I hope you hear something soon. I’m paying out of pocket to have my surgeries (it looks like I need both sides done). Will see Dr. Hepworth in March and it can’t get here soon enough. Praying he stays healthy in the meantime as well as myself. Thank you for the information. You are very helpful!
@Brandy, I meant to ask, who did you end up scheduling your surgery with? I ask because you are unique in the sense of being able to visit 3 of the top ES surgeons in the US. That would be my dream and many others’ so just curious. I have had one consult with Dr. Jian at Kaiser Sacramento Medical Center, have another with Dr. Samji at Camino ENT on 12/22/23 and the last one with Dr. Hepworth on 3/14/24 (and with his nurse practitioner a few days before). Thank you.
I have surgery scheduled with Hepworth but not sure I will keep it. My ultrasound was conclusive for blocked flow. Very profound according to Hepworth. We are still proceeding with the venogram regardless. Right now, it’s between Hepworth and Costantino. There’s pluses and minuses to both surgeons. I need more answers before committing. Annino did not impress me at all. My venogram is only a month away. The top specialists do have long waits. It would have been longer with Fargen. My honest opinion is that too many rush into surgery and end up with more issues and revisions. I am quite complex and need to be sure of my decision regardless of who the surgeon is.
Well, that’s gives me some solace knowing Annino probably wouldn’t be the best bet. He was closest to me and I thought at least he could advise me. I’ll keep sending out my scans to the others people have recommended.
I am complex. If you’re not complicated, Annino may not be a bad choice. He just didn’t impress me as much as Costantino and Hepworth. I ask a lot of questions. He was the only surgeon who works by himself as well. I’m a big advocate of getting at least 3 opinions but I realize that’s not always possible.
@Brandy, @Sunflower50 's case is complicated, & she’s mostly undiagnosed at this time. New User
Annino would not be the best if she’s complex. My diagnosis was pretty clear on paper and on imaging. Hepworth did pick up on more and he has his jugular ultrasound protocol that only he uses. He works with a vascular surgeon were Costatino works with a Neurosurgeon. Hep also wants to get the venogram. All my issues are pointing to C1. Hep is willing to do a shave but not sure yet. Meeting with Dr. Lo in Long Island next week. When you’re complex, it’s not easy. It usually takes a team of Drs.
@Brandy, I’ve referred her to all the doctors you’ve mentioned plus some others. She’s in the process of trying to get appts.
@Brandy Are you going to get a dynamic CT venogram or a catheter venogram?
Has anyone on this forum done a catheter venogram to check cranial venous outflow obstruction? How useful is it?
I have venous outflow obstruction- severe. Confirmed by Hepworth’s jugular ultrasound protocol and by CT angiogram of head & neck. You can not go by imaging along and this test measures for pressure gradients. Some surgeons won’t even do surgery unless your gradients are at a certain level. This is why I feel many rush into unnecessary surgeries and they fail. My procedure is called “catheter angiogram/venogram”. It’s being performed at a hospital. At times they also perform a spinal tap along with it but I have already had that done. I do feel 1,000% these tests are necessary. I know of people who had surgery even with Hepworth who are still in pain, who are now getting this procedure done. Some patients elect not to do it due to timing or just don’t want it. I’m literally postponing surgery with Hepworth because my procedure won’t be done in time that I need to give us more answers. There’s never any guarantees, but why risk it?
What possible unresolved issues do you think these patients have in your estimation? Insufficient styloid removal? Unresolved C1 compression of jugular vein? Unresolved TOS? Or perhaps even transverse sinus stenosis? Hyoid bone syndrome?