My daughter is on a blood thinner and she just had a venogram done this week by Dr. Mehta. I highly recommend Dr. Mehta. He is kind and he explains everything very well. You definitely need for someone to drive you after a venogram and you will need two days to recover before doing much walking. She was off of her blood thinner, Eliquis, for three days prior to the venogram and she started back on the blood thinner the day after the venogram. During the venogram she asked for enough sedation to not remember feeling pain. She was still a little too much awake for her liking before they started and she told them and they gave her a little more sedation. She doesnāt remember any pain. The type of sedation that is used wears off very quickly right after the procedure so she was able to talk to them while still in there on the table. As far as Barrow, my daughter dealt with their office. They were difficult and they were rude. She waited over three months to see a doctor just for him to tell my daughter to just live with her condition. He was not friendly. He was arrogant and cold. Since then my daughter has been seen by Dr. Nakaji who is caring and wonderful. He is who ordered another CTV and the venogram. He found that my daughter has the biggest styloid that he has ever seen and her c1 is also an issue. Her jugular, which had a blood clot, but has since mostly resolved thanks to Eliquis, also, unfortunately, has a benign tumor in the outer wall. I believe that he will be able to help her. I strongly recommend Dr. Nakaji and Dr. Mehta. I wish you the very best in your journey toward healing. Take care.
I appreciate all the responses.
@Chrickychricky , I didnāt know all that about UCSFās Pulsatile Tinnitus Clinic. If thatās the case, I can see the extra testing being as much about confirming I am a good candidate as it is about being a deterrent for people who have other options. Two other neurosurgeons have each recommended the scan (Barrow + Dr. Nakaji), and a third agreed to proceed directly to surgery for VES (Dr. Aghayev). I think these tests are functioning more as a deterrent for me and an effective one at that because I have pretty much moved on.
To be honest, if that clinic and those slots are that coveted, I donāt know if I want to take those resources away from someone else who could need them. Traveling to Arizona might be a major inconvenience, but itās not impossible. Maybe there is someone who needs that appointment at UCSF more than me and doesnāt have other options.
@WorriedMom, can I ask if you drove to Dr.Mehta? I am wondering how soon I can fly after that procedure. Knowing your daughter only needed to stop the Eliquis for three days before the procedure and started again immediately after, I think it could be worth it for me to start. I was imagining a much longer window before and after.
I appreciate you sharing your experiences too. I have heard of similar experiences. That said, I am still pursuing three neurosurgeons. I have an appointment/consult scheduled with Dr. Costantino in New York at the end of April. This scan is what is keeping me from appointments with Dr. Nakaji and Dr. Lawton. I have asked my PCP to send a referral to Dr. Lekovic at UCLA as another option. I havenāt heard a lot about him but I understand he has performed VES surgery before. The idea is that if I hit some obstacle, I am already working on another option, so I donāt waste any time.
If it all works out and I have a choice, I think I will choose Dr. Nakaji based mostly on all the positive experiences shared on this forum.
Thank you both for the well wishes. I hope everything goes well for your daughter too,@WorriedMom. I canāt imagine going through this with one of my children.
If I can impose a little, if Dr. Nakaji agrees to do surgery for your daughter, I would really appreciate it if you could share an approximate date. Iām not sure why but the neurosurgeons I have been in contact with refuse to share how far out they are currently booking surgeries. I asked for the roughest, most non-commital estimates and they refuse.
I have looped in my employer on what is going on and told them I expect to have surgery in the near future with a fairly long absence. They have been extremely supportive, but the logistics of my absence need to be coordinated as far in advance as possible. If I can find out a rough timeline, it would make everything go a lot smoother.
@Chrickychricky - Thank you for sharing the in-depth information about why things work as they do w/ Dr. Amans & his office. Iāve known several people who waited for 4-6 months after initial contact to receive a response that acknowledged that initial contact. Having worked in busy medical offices myself, I simply donāt understand why acknowledgement canāt be made sooner even if itās just to say we received your request, weāre backed up a number of months but will get back to you.
My daughter lives in Glendale so she did not fly. You would need to stay in a hotel or someplace at least a day to recover before flying. Preferably two days. Also know that you will need for someone to help you. You will not be able to lift a suitcase or more than 5 pounds for a while because a plug is inserted into the groin to plug the blood vessel. If you are not careful you could dislodge the plug. If you cough or sneeze you have to apply pressure over the plug. My daughter is pretty tough but she had to take a couple of days off work. The day after is a bit painful and rest and an ice bag is a must the first day after. I suggest putting the ice bag in a zip lock bag and cover it with a towel because you donāt want even a drop of water to get on it until they say that it is okay to get the steri strips wet. An ice bag sweats with condensation. You donāt want an infection from moisture. My daughter put a sterile gauze over the steri strips, doubled some saran wrap and put it over the gauze, and then sealed it all with nexcare waterproof foam tape to shower. As far as referrals, my daughter could not get a referral so she told Dr Nakajiās office that she could not get a referral and Dr. Nakaji just ordered what he needed and my daughter had another CTV (she had one back in May of last year when this whole ordeal began and she was hospitalized) and he ordered a venogram. My daughter will meet with Dr Mehta next week for him to go over his findings of the venogram. I am not sure when she is supposed to see Dr Nakaji next. No surgery has yet been mentioned by Mehta or Nakaji but if it is I will be sure to let you know when it is scheduled.
I mentioned covering the groin site to shower. Be sure to remove the waterproof cover immediately after the shower. You donāt want to keep the steri strips covered or bacteria could grow.
I really appreciate all these details and advice @WorriedMom. For sure, I know I cannot go to that procedure alone now. I will plan to take a full week off from work, considering travel time and (hopefully) stacked appointments during the visit. I will consider all of those tips about icing it. I have ice gel packs that are great for icing things without the condensation that a regular ice pack generates.
I just read through your post about what happened to your daughter. Scary stuff, and that is something I get increasingly worried about. I really hope my local neurosurgeon can prescribe me some form of blood thinner on Tuesday.
I have been taking 2,000 FUs (fibrinolytic units) of Nattokinase once a day as a ānaturalā blood thinner since I first discovered I had VES (suggested by AI). I have no idea how effective it is, but itās such a light dose, I doubt it could hurt anything. My condition continues to decline, but maybe it would be even worse without it. It is hard to say.
I have read good things about
Nattokinase. It sounds like a very wise choice.
@Tusker Blood thinner was part of the protocol for my IR angiogram. They administered it IV at the start of the procedure. As Dr, Amans explained to me, it is necessary as they are stopping and starting blood flow for the manometry and need to ensure that the blood doesnāt clot quickly.
@Isaiah_40_31 Totally agree with what seems like it should be the standard of care. I donāt know how it got to be the medical culture to just leave people hanging in wait.
Just a quick update on my situation. I have an appointment with Dr. Ducruet for both a preliminary appointment to discuss the scan and then the venogram with manometry itself the following day, towards the end of March 2026. Dr. Nakajiās office scheduled me for an appointment to review the scans and discuss surgery the same day as the scan.
His office told me that if Dr. Nakaji recommends surgery, they would likely book me in April. Early May at the latest.
If everything works out, it would be a crazy timeline compared to other experiences I have read here. The first time I ever even heard of Vascular Eagle Syndrome was in late December, and I might have surgery by April. Almost exactly two years after my symptoms first began.
Thatās really good news & doesnāt seem like too long to wait! Brilliant 
Great news, @Tusker! Iām also glad itās working out for you to see Dr. Nakaji on the same trip which was the initial plan. Iām so glad surgery would be booked so soon after your consult!