@Isaiah_40_31 That’s awesome to hear, people who can think outside of the box & improvise accordingly seem to be the best for the complex folks. That’s one thing I am slightly concerned about with Dr. Costantino, in that: in his attempt to standardize his procedures, is he overlooking or forgoing additional steps that need to be done for someone who is more than a “standard” IJV compression patient? I am going in person this time to try & get answers from him, as he rushed me off the last zoom call after only ~15 minutes or so. If it was down to just first impressions, I would have already moved on from him, but his results seem to speak for themselves…hence the dilemma.
I feel stressed even more so as I’ve had to make the majority of my health decisions on my own (doctors left it up to me), all before age 25 or so. It’s hard looking back & wishing you would have perhaps chosen differently, which is the main reason why I’m taking so long to try & decide on a surgeon for this procedure.
@nnaeve good question, I had been working with Dr. Greenfield (neurosurgeon) at Weill Cornell, but now I primarily talk to Dr. Robbins (neurology). He is in favor of conservative migraine treatments, however after five months of that + many months in the past, it’s getting hard to take. He doesn’t believe in doing anything for me at the moment (he is very skeptical of any type of intervention), which is a tad frustrating.
On Dr. Lo’s request, I did submit my case to Duke about a month ago, however they told me 4-5+ months for an evaluation. Dr. Hui thought I should tackle my IJV stenosis first & then circle back if my leak doesn’t resolve.
That’s great about Dr. Callen, I’ve heard very good things about him!
I’m sorry that the doctors you’ve seen haven’t been more direct/proactive in helping you understand/decide what would be the best course of action for you under whatever your circumstances were when you were seeing them. I think it’s better when doctors outline what they feel is best & give a solid explanation as to why they think it will help as that is useful when one is trying to make a decision about something as serious as surgery.
@Isaiah_40_31 absolutely, I think that’s an unfortunate thing that many of us here have probably experienced, to varying degrees. I actually read a post from someone in the FB group yesterday who said she initially didn’t want to go with Dr. Costantino’s plan because she thought he would remove too many anatomical structures, & chose Dr. Hepworth instead. Apparently she is struggling now from an inadequate IJV decompression & is back with Dr. C to redo the procedure, & is now saying that she wishes she had gone with him originally.
It really is so hard, especially when the surgeons don’t agree on similar plans. Ideally I need this surgery to hold the rest of my life (probably 50+ years), so I wonder if going with Dr. C & having any possible structure that might cause compression down the line removed, would set me up better for the very long term in decreasing the chances of residual compression down the line.
I suspect you are going to do a lot of second guessing. I have seen many of the surgeons discussed here that have had some patients that have to be “fixed” for whatever reason. You will have to make your best guess and roll the dice. Hard to make that decision. I am still watching and researching but i dont have insane symptoms like some of you.
I know some here knew that Hepworth would go to hawaii to teach but not sure anyone knew of the quarterly meetings to perform surgery on a select few. Honestly, they should give a discount since it is part of their teaching and probably doing write ups and studies on people.
Kind of like Osborne filming his operations and putting them on youtube. I know the Vet said osborne did his for free.
@JugularEagle That’s a fair point to make, at the end of the day there really isn’t going to be a “yellow brick road” that leads me to the “perfect” decision. I probably am going to have to work on the high amount of stress that I feel to make the “right” decision so that I can have a chance to resume my old life. It is a bit hard to feel the responsibility of that, however holding on to that amount of stress can’t be helpful
@dreamliner - No doctor is perfect when it comes to doing surgery. Medicine is called " a practice" for a reason i.e doctors are in “medical practice”. They learn new things with each patient & practice/hone their skills with each new diagnosis or surgery they do. Thankfully, different doctors have different approaches so when one doesn’t work for a patient, that patient still has options even if it requires additional surgery(ies). I understand that having to have a revision surgery is not ideal, but if it achieves the desired result then it’s worth it.
Your situation is so complicated that you may not get the 50 year surgery solution that you desire. You may get " we fixed this but now you need that because something else is clearly also affecting you."
I can imagine the stress you are under. You might consider counseling. For me i know counseling likely wont help with my stress and anger at the medical gaslighting i continue to go through. What is going to help me is to get to people who recognize the problem instead of telling me there isnt one!
This week i will contine the battle of the neurovascular surgeon saying i dont have a problem with my jugular and carotid artery before the report came out by the neuroradiologist pointing to those exact problem areas.
I have been thinking about this vacation destination teaching events.
This may be done to make money teaching other Doctors and enticing them with exotic locale. Doctors get a tax deduction. It may give them necessary credits similar to what lawyers do. Lawyers need so many educational credits during a specific time frame. There are cruises and vacations that they can do to get the credits.
And as an added bonus there are surgeries that the doctors may or may not watch.
We dont have enough info
But that is not to say it wouldnt be helpful. I think Dreamliner needs to get more info about the surgery.
Certainly, if they are making money from the teaching event that might include surgery the patient should get a discount.
To be clear, i am not slamming what is going on in Hawaii. I am just saying patients need more info. I am sure the doctors involved are trying to further the Eagle Syndrome cause to help future patients. This quarterly meeting of the minds could be taking place at a more convenient place in the US for patients and the traveling educating Doctors but those Doctors might be more willing to come to seminar in exotic locale.
Regarding the person on FB group’s experience, I imagine, given Dr. Hepworth’s extensive experience, that he decompressed IJVs adequately. But as Dr. Nakaji told me, it’s a lead a horse to water situation. They can create the opportunity for blood to flow but it still may not choose to take that root. For me, we started on the left side which was my non-dominant side. After the surgery, He told me that the vasculature on that side was diminutive and not likely to create enough space for adequate blood flow…so that’s also a thing. On the dominant side, which I just had done 2 weeks ago, he was able to visualize significant flow once he decompressed the IJV. I’m feeling pretty good at this point so hopefully my blood flow is enjoying the new superhighway over using the backroads. If my symptoms come back, my next step would be to try stenting rather than another surgery. I’m also in the camp of more isn’t necessarily better and can sometimes have unintented consequences which is why I chose Dr. Nakaji.
It’s good to have these discussions, ultimately though there sometimes is no right or wrong answer/ surgeon to see, we can only make the best decision based on our own medical situations, take any steps forward with gratitude and accept that it may just take us a bit further along in our journey towards better health, hindsight is a wonderful thing but sometimes it’s best not to look backwards, it may be for a person needing revision surgery that the initial surgery was a success but that sometimes if these veins have been compressed for a while they can collapse again after surgery…it may not be down to surgical technique… @JugularEagle , I hope that your appointment goes better than you expect and that you get some help without having to fight for it
@Isaiah_40_31 that is a very important point, you think after almost six years I’d remember that more frequently And yes, I would definitely take a revisionary surgery were it to be helpful, I’m just wary of the as I’ve had multiple brain surgery revisions over the years that have ended up more & more complex, so I’d like to do my best to avoid one. But we can only do so much.
@JugularEagle that’s very thoughtful advice, thank you! I have been seeing a psychologist regularly for a few years now but perhaps this is something I need to dedicate quite a few visits to. Am very sorry to hear about the lack of acknowledgement from your surgeon – it’s sad we have to deal with all of these other things in addition to feeling crummy.
@Chrickychricky appreciate that explanation on both sides, & hoping for that the new access can help you feel better going forward! How was your experience with Dr. Nakaji along the lines of submitting info, getting an appointment, feeling he was thorough, etc.? He’s clear on the other side of the country for me but he’s one of the few people that Dr. Hui recommended to me, so I might go ahead with seeing him if he’d accept me.
@Jules thank you for that reminder – it’s certainly hard sometimes to remember we are our own unique situation & that someone else’s experience/outcome won’t necessarily reflect ours. I think it’s a mix of feeling “at peace” with the surgeon + with the way that they out their techniques. Hoping to gain at least a bit more clarity this week with both Dr. Lo & Dr. C visits, & from there I guess I will schedule ones with Dr. Nakaji and/or Dr. Hepworth as needed. My conquest to try & get thru to his office starts today
@dreamliner I have nothing but good things to say about Dr. Nakaji’s practice at Banner Health. I have not had any of the difficulties other people have had with other surgeons. Someone always picks up the phone, they are very responsive and I have always been taken in to my appointments on time. His billing people have gone above and beyond to try and help me with the insurance situation. Dr. Nakaji approached my case as methodically as an engineer and is simultaneously incredibly personable.
Did nakaji do anything for you before traveling to his office? When I called the receptionist said he cant telehealth across state lines.
I am wondering if a local physician to me refers to him does he at least look at the file. One obstacle for me is his requirement of that one test where there is a debate about doing it awake or asleep.
One of the big problems i have with hepworth is not getting back to people even after they have had an appointment and even after surgery. It could very well sway my decision.
@Chrickychricky that’s great to hear, I actually just got off the phone with them & they said if I’m coming from a Hui visit, they might not need as much other than his write-up & my CTV & catheter angio/veno. Will definitely head down to visit if he accepts me, I’m under the impression he’s very picky with the type of people he will accept for surgery.
@JugularEagle This is exactly where I stand. I understand his office is going through many sorts of changes, but I don’t want to play a roulette game if I need to get in touch with someone quickly. Only after five calls was I actually able to leave a message, but I’ve heard even that doesn’t often work. It’s a hard place to be especially when you aren’t anywhere near local.
@dreamliner, @JugularEagle for me the pressure gradients across the stenoses from the angiogram with manometry was how he decided to take my case. I completely trust in the group of doctors trying to understand venous congestion disorders and it is their opinion that the angiogram be done while awake. You could miss a pressure gradient with sedation and essentially get a false negative.
Very interesting.
And yes, I would definitely take a revisionary surgery were it to be helpful, I’m just wary of the as I’ve had multiple brain surgery revisions over the years that have ended up more & more complex, so I’d like to do my best to avoid one. But we can only do so much.