History bilat ijv decompression surgery with Nakaji and learning i may need stent as there is still compression. i was told prior to surgery, that a stent may be needed. Been waiting for appt with dr Fargen over a year, don’t think that will happen. Had a phone call appt with Dr Mehta yesterday that i was anxiously waiting for and he wants to repeat venogram.? Called Dr Nakaji office and he wants repeat CT tomorrow, i had explained my terrible experience going to this imaging facility in another post….tech had only been there 3 days, uninformed on what to do, so i left. This image is basic ct no flexion / extension i don’t know why i should do it. I have a dynamic ct post surgery. So my dilemma why am i going back to original testing instead of moving forward with treatment, repeat venogram and basic CT. My Neuro following my care suggested Dr Arcot in NY, got an appt in 2 mos, but sadly he seems out of network. Even Nakaji is out of network since his new office. My symptoms are debilitating. Any advice and reccomendation on seeking out new providers? Or would you go back to this preliminary testing, 3 venograms to get stent??
That’s very frustrating for you, I presume that they’re looking to see changes in the time since surgery, but if he wants a CT venogram with manometry then this isn’t without risks, & even a standard CT with contrast is more radiation again, so I understand your concerns… especially as the facility didn’t know what they were doing before!
Dr. Andrew Ducruet, cerebrovascular surgeon at Barrow has been mentioned in another discussion by @avarj : Update from Arizona at Barrow Institute of Neurology and Dr. Nakaji’s Office - General - Living with Eagle
I don’t know much about him, it was recent, so whether seeing him might be an option?
Hopefully others will chip in with suggestions too
Thanks Jules, all facilities i have to travel. So any provider recommendations are appreciated. Would you personally start over with these preliminary and repeat of tests? We already have the answers, so i am considering canceling
I don’t know that I would want to go through all that testing again, but to be honest my ES journey was very different to yours and your situation…I was very lucky that the surgery removed all the IJV compression and my symptoms resolved, I guess if I’d still felt as bad as I did before the surgery & if it hadn’t helped with symptoms I would perhaps try anything to get better!
It may be if you were able to find a different doctor they might be happy to go with the testing you’ve already had? Or if not, then if they can recommend a better radiology dept so you avoid that experience again then that might be the right path to take? It does seem strange though to be asked to have the same testing by Dr Nakaji when you’d had a dynamic venogram after surgery
@birdie1 So sorry you are still struggling. How long has it been since your surgery and the last CT you had? I think it would be worth it to start with the basic CT venogram ( not the one with manometry yet) to see if can identify the point of compression at this moment. Maybe it’s still a decompression issue rather than a problem with your IJV remaining open on its own. You wouldn’t want to put a stent in if there are still compressive forces I don’t imagine. That’s why stents are not a primary treatment option. Keeping you in my thoughts.
Surgey last Sept, ct in dec. Surgery looks good but still Appears right side compressed by muscle, left side against c1. Ultrasound shows trouble with blood flow on right. Which direction of provider would you go next? Dizzy, many falls, resulting in fractures, fainting spells, iiH, tinnitus. Symptoms almost worse
