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
@birdie1 If Barrow is in network for you, Dr. Ducruet was fantastic to work with and very knowledgeable.
Sounds like Dr. Nakaji was banking on the styloid removal to decompress the area but C1 was part of the problem. Did they mention this before doing the initial surgery in Sept? From my understanding, checking the anterior shelf of C1 transverse process should be standard when assessing IJV compression in vES. I know Dr. Nakaji does this because he has videos that explains his approach. One thing to note, on Dr. Nakaji’s practice website, he explains they generally only plan on taking out 75% of the styloid, so I would clarify how much they actually removed.
This was part of my recommendation at Barrow, to address both the styloid and C1, then stenting would most likely not be required.
Gosh I’m so sorry to hear that. If it were me, I would do another CT venogram and discuss it with Dr. Nakaji to see if you still require surgical decompression or if a stent would be enough.
@birdie1 - Dr. Costantino isn’t close to you, but he is very thorough when it comes to IJV decompressions. He works w/ Dr. Tobias who does the C1 shave. Dr. Costantino has a good reputation for doing successful IJV decompressions & has done several revision surgeries for our members when they haven’t had a good outcome. You could get an appt w/ him for his opinion & share the imaging you already have prior to getting more imaging done .
I had the ct, findings : ijv on right significantly compressed by fascial planes and right sided process. Some compression by right transverse process of c1 noted. On Left significant narrowing of ijv, secondary to compression by the left transverse process of c1. There is also compression involving inferior left ijv at level of carotid bifucation bilaterally adjacent vessels
And i know on previous ct with flexion/extension there is complete flattening of ijv. This ct only in neutral position
So i think you are right chricky, there seems to still be compression. I think a stent would be premature prior to having more decompression??
@birdie1 - It sounds like more of the TPs of C1 need to be removed, & you need removal of some fascia & further shaving of the right TP of C1. On the left you also need more of the TP of C1 to be shaved, & moving or removal of the bilaterally adjacent vessels that are compressing your left IJV at the level of the carotid bifurcation.
I believe these are things Dr. Costantino & Dr. Tobias would take care of, but you’d need confirmation from Dr. Costantino.
Holy cow Birdie1, this is a scan after surgery? It looks just like a presurgical report. It looks like there are still structural compressive forces to be addressed. Do you have the surgical report from both surgeries that says everything that was done? Dr. Nakaji, right? If it were me I would go back to him with that new report and discuss options. I’m so sorry you are having to go through this.
I know so disappointing! When i had initial appt with nakaji he was at banner. Then when the surgeries started he had his own practice. So there isn’t a portal to view notes. Same procedure you had c1 Shave and styloidectomy. Right side was very difficult lots of pulling, he had to reposition me mid surgery. So i feel like I’m starting over, and explains why i still have all the symptoms. What are your thoughts? Where would you go next? And of course i need to here back from Nakaji on his takeaway.
@birdie1 - I agree w/ @Chrickychricky that your first stop should be a consult w/ Dr. Nakaji. If he isn’t able/willing to do a revision surgery for you, then Dr. Costantino could be next. We’ve found that some doctors aren’t willing to do revision surgeries when their first go around wasn’t successful, but you’re the first member I’m aware of who didn’t get a good outcome from surgery w/ Dr. Nakaji so I don’t know what his response will be. That said, no surgeon has a 100% success rate especially when the surgeries performed are more complex. Your surgical situation, especially on the right side, sounds like it was extraordinarily difficult, so Dr. Nakaji likely did all he could while keeping you safe.
I agree with @Isaiah_40_31 Dr. Nakaji had expressed to me that he should be my first call if I continued to have symptoms. I know he does quite a lot of revision surgeries so he isn’t shy about going back in.
