Hi JVC friends. I haven’t posted on here in ages as I was waiting and waiting for my CT Venogram, and then the surgeons to tell me what they think. Nakaji threw me for a loop and I got a call from one of his staffers last week telling me he found “no evidence” of compression and did not recommend surgery. Ok. So then I had my consult with Costantino today (it was supposed to be last Monday but he had an emergency, which is understandable; then I was rescheduled for Weds. In a scenario I know you’ll all appreciate: the time came, and my Zoom was not working! We later figured out I somehow launched two zooms at once, but after fussing for several minutes Dr. C said we’d have to cancel and reschedule. I SOBBED. After waiting months, it was soul-crushing. Finally I saw him today!)
Unlike Nakaji, he says I have 90% compression on the L and 85-90% on the R, along with partially empty sells, which he noted was evidence of IIH pressure spikes. Oh – and for funsies, the radiologist had noted on my report an “incidental” finding of a 12 x 8 mm mass on one of my parathyroid glands (which normally is about 5 mm). That led me on a goose chase to two top parathyroid surgeons in LA, but when my blood work came back “normal” they both said I should just “wait and see.” Oy. Costantino had some helpful advice for me there too.
Dr. Costantino said that between the severity of my compressions and the severity of my symptoms, he expects I’ll be in the 10% of his patients who get both sides done. Most are happy with the results after one side.
Given the conflicting opinions between Nakaji and Costantino, would you get another opinion? I did see Osborne in LA (where I live) when I first had this suggested – and well before the CTV. He said he’d operate on me, but he was very nonchalant about it. He doesn’t place any value in knowing the percentages of compression, etc. I don’t think he’s the right guy for me since I have vascular involvement. I really like Costantino and feel ready to proceed. Am I missing anything? I know the surgery has risks of course, and can be a rough recovery. Any thoughts? Thanks! – t.
Dr Costantino is very experienced with this surgery so you’d be in good hands! We have had other members turned down for surgery with Dr Nakaji when they had clear compression too, so we’re not sure why this was…Here’s one discussion: Surgery Doctor Recommendations - General - Living with Eagle
We do usually suggest that members get more than one opinion & you’ve obviously tried that, so if you’re happy with Dr C and feel confident with him then maybe go ahead? Dr Osborne is very experienced too and has done lots of successful surgeries, he doesn’t seem to be worried about getting testing for VES but as he removes the styloids very close to the skull base then he has helped members with IJV compression. Given that you do have intracranial hypertension & other issues it sounds like Dr C would be a good bet!
You’ve had an “adventure” getting to the point where you currently are, @tkk! I’m glad you’ve finally gotten a diagnosis that aligns with your symptoms & that Dr. Costantino is willing to operate & even bilaterally over time. I agree with what @Jules said that Dr. C would be a good choice for surgery. If you really want one more opinion, you can make a consult appt with Dr. Cognetti, but it won’t be until Oct. or Nov. of this year. I doubt you want to wait that long.
Hi @tkk how could that percentage of compression be missed? I am in the surgical consultation phase (waiting) and don’t have a CTA or CTV but don’t want any dismissals due to not seeing compression when it is actually there. There aren’t any other physicians I can see where I live for another opinion because I’m in Canada.
I hope your surgery goes well! Based on your description of the Dr’s you’ve seen I think you’re making the right call with Dr. Constantino.