I need to have surgery as per both Bolognese and Hui. I am quite ill–and have been for many years– but finally am getting clarity about the causes, which definitely include jugular vein compression. Once I was clear about seeking surgery, I reached out to three of the recommended doctors: Nakaji, Constantino and Cognetti. I understand that Cognetti is scheduling consults into February of next year, which is a long wait as my condition is worsening. He received my scans and reports and posted in regard to the scans on the patient portal: non-reportable exam. I really don’t know what that indicated and I don’t want to jump to the conclusion that it IS his conclusion. But maybe it is. I’m having trouble communicating with Constantino’s office but I am sure I can overcome that if I put my shoulder to the wheel. Dr Nakaji, who was my gut’s first instinct, has amazed me. Or his office has. They obtained my imaging from the various facilities in four business days and a week later called to tell me that he believes I would benefit from a right-sided decompression and that they could schedule that for October. In many ways I am keen to just leap and commit. But I have a few questions lingering before I do. (Obviously, I have a LOT of questions for whoever is operating on me, but since he works by having an in-person consult one day, surgery the next, I kind of have to feel as far into this as I can before making a decision.). I think I set out with the intention to do due diligence and get three opinions. I can now abandon that or I can push surgery off for another number of months. (And I would add that during my angiogram an asymptomatic enraptured aneurysm was found that needs embolizing, and while no one thinks it is urgent or should be fixed before the decompression, it is out there ahead of me and I can’t put the surgery off indefinitely.). So…. any thoughts on just choosing Nakaji without talking to anyone else? (I have talked to Bolo, of course.). And perhaps more mysterious to me: anyone have any insight into why Nakaji’s office is able to be so quickly responsive while others are quite the opposite? Thanks!
@jyoti I had the exact same reaction to you regarding Dr. Cognetti. I saw on the Jefferson my health portal that my CT results were non-reportable. But then his office called me a week later to schedule an initial with Dr. Cognetti for January. He only books appointments with those he thinks he can help via surgery. So that being said, “non-reportable” on the portal doesn’t mean he thinks you don’t have ES, it’s just what he puts for some reason.
It is a difficult one; we’ve had members consult Hepworth, Nakaji & Costantino who are all very experienced with VES & have all done many successful surgeries, and they have been told slightly different things by the different doctors…while we are mentioning these doctors as being ‘experts’ in this field, & the majority of members do well after surgery, some for whatever reason we don’t know don’t do as well!
I’d love to be able to give you an answer, but I guess you do have to weigh up how rough you’re feeling vs how long you want to wait to get those consultations & opinions, & how worried you are about the asymptomatic aneurysm?
Maybe some who’ve had surgery with Dr Nakaji can comment on their experience, I think he’s getting very busy too so October is good to be scheduled… But thinking of you with this difficult choice, & I pray that you make the right one! 
Thanks for sharing that. I was wondering if the notation actually meant–this imaging has been received but not really examined. I was thinking of calling tomorrow to ask. But it is reassuring to know that this may be standard protocol for him.
Yeah…. I know it lies with me, as it does with each of us. But your thoughts are helpful and it is particularly useful to know that he is getting busy in October. And your prayers too, Jules. I will be guided I trust. But ….does anyone know why he can do this so much more quickly than anyone else? In the end it doesn’t matter too much, but I am curious. And of course I would love to hear from Dr Nakaji’s patients–the good and the bad. I think I have read most everything on this site, but if anyone has something to share it would be most welcome.
I think it’s just that he’s getting busier in general, some members have been asked to get more imaging done before he’ll look at their case, as he’s been getting lots of referrals…I think one of our members has said Dr Costantino is busy most of September. Dr hepworth’s office & getting in contact seems to be an ongoing issue!
@jyoti Here’s what I know about why Dr. Costantino & Dr. Cognetti are booking farther out: Dr. Costantino does research & works on other medical projects in addition to doing his surgeries so he’s got several “irons in the fire” which can push his schedule out further for new patients. Dr. Cognetti prioritizes his cancer patients so only does ES consults & surgeries one day each month. He’s now booking in March for an initial consult. Dr. Nakaji moved out of a group practice & into private practice earlier this year so is rebuilding his patient base which I suspect has allowed him to see those he feels he can help in a more timely manner. I have to say that I’m surprised he offered you surgery w/o requiring a venogram w/ manometry done by Dr. Mehta first. I think the fact you didn’t have to get that done indicates he sees what he needs to in whatever scans/tests you’ve sent him so doesn’t need that confirmation that surgery will help you.
@Chrickychricky had two surgeries w/ Dr. Nakaji so has a good experience & has offered a lot of good information on the forum about Dr. Nakaji. You can search for her posts using the magnifying glass image at the top right of this page.
I’m wondering if Dr. Nakaji knows about your asymptomatic aneurism & if so, if it’s something he could take care of at the same time as your styloidectomy/IJV decompression.
@Isaiah_40_31 is spot on regarding why timelines are they are with each physician. I can’t add too much other than I consulted with both Dr. Costantino & Dr. Nakaji & I found both very professional & skilled. While I did not end up going with Dr. Nakaji for surgery (due to a few factors such as distance), I was impressed by his knowledge and approach, especially in my experience of consulting with many other neurosurgeons over the years
This is super helpful! It makes a lot of sense now why he was able to move so quickly. Which is just a question, but having it answered is reassuring. I have heard from several people that it is surprising he has just gotten me in so fast. (Or so I think–I still have to schedule.) I did have an angiogram/venogram/manometry with Dr Caton, who is highly regarded by Dr Hui, in April which Dr Nakaji based his recommendation on. It sounds like he sets a lot of store by the venogram/manometry. I was told he got Dr Caton’s report which rather featured the aneurysm, so I will ask about that. That would be very cool!
I have read a lot of @Chrickychricky’s posts—thanks. They are definitely part of why I was leaning Nakaji to begin with.
Thanks so much for sharing your experience. Again, I am grateful for the fortification the is providing. I am such a novice in some ways–I have never had surgery. At 68. So I am not taking this in my stride, as it were. The little details other people can tell me make it more solid for me. I do think I am going to schedule tomorrow, though. Did you go with Dr Constantino?
I did! I am two months post-op and have had an up and down recovery though I feel things overall can be considered trending positively.
I totally understand – it is quite an undertaking at any point in life! I mostly went with Dr. Costantino as he was much closer to me (and travel is not very friendly to my MCAS flares), & I am in my 20s so I am trying to set things up for the long run. Dr. Costantino & Tobias remove a bit more than Dr. Nakaji does so I ended up going that way as I’m hoping to avoid additional surgeries the rest of my life. I have scarred heavily in the past and Dr. Costantino’s surgery plan seemed to provide more of a buffer for me.
@dreamliner - I’m sorry your recovery has been up & down but it seems that’s the way of recovery for most of us after an ES surgery & especially after one that includes IJV decompression. I know you know this but quite a number of our members who’ve had bilateral ES w/ bilateral IJV compression have gotten the best surgical results when both styloids are shortened & both IJVs are decompressed even if the dominant IJV was decompressed first. I know you have other factors that may be interfering with a faster recovery, but I’m so glad you feel that your recovery is trending positively. I’ll keep praying for you. 
Thank you for the update.
@jyoti It’s fantastic that you’ve made it to 68 w/o needing a surgery! I’m right there with you age wise & have had a number of them. I’m envious! 
Yes, I have been fortunate in the surgical regard. But it looks like I am not going to make it out of this life without having had that experience! For which, at this point, I am grateful. Still new frontiers to find and conquer, eh?
Thanks a lot for the encouragement @Isaiah_40_31 ! That’s all a good reminder for recovery which certainly has felt longer than two months! Initially during weeks 4-6 I felt a good bit better, but weeks 7-9 have been a regression which is frustrating. I know I am still considered very early in the recovery process but any consistent backwards step is always frustrating after feeling better initially. We’re going to try and get a scan next month to see how things are & will likely discuss doing the other side following that study. I believe my left side compression is even worse than my right, & when I consulted with Dr. Nakaji, he gave me a “90% chance” that I would need both sides done, with him even suggesting he might vouch for having the left side done first. Trying to hold onto hope of much more recovery to go at this point!
I too have contact with Nakaji’s office. I first did a zoom consult with him. Then I went to Scottsdale for the CTV with Dr. Mehta recommended by Dr. Nakaji. Dr. Mehta Great vascular radiologist. Next day I met with Dr. Nakaji on August 14. Surgery is set for October 15. They did offer me September 19. Being Canadian I needed more time. I had to get pre surgery labs etc. Nakaji is very thorough and leaves no stone unturned in my opinion. He is able to do C1 resection as well.
I think many don’t work with him as his intial consult fee is quite high $2500. Refundable if you proceed with surgery. I think since he is no longer with the Barrow Institute it has taken some time to get Insurance set up with his practice. So most will not pay out of pocket therefore shorter wait times. Being Canadian I had no choice. Staff have been great as well. Rob is the hospital contact and now awaiting bank transfer information.
Is Dr. Nakaji aware of your aneurysm?
Have you had a CTV with motion?
Hope this helps.
@dreamliner - Here’s another perspective - It’s not unusual in bilateral cases for symptoms from the remaining side to flare up significantly after the first side is taken care of. That happened to me around two months after my first surgery. It’s possible your remaining & perhaps worst side (my most symptomatic side was left for the second surgery) has finally jumped the pain meds & care you’re giving your body & is making itself known, thus your worsening symptoms. I highly suspect you’ll notice more significant recovery after you get your remaining styloid resected & IJV decompressed.I’m really sorry you’ve had this setback though. 
Hi @dreamliner. I just wanted to chime in & let you know that I had the same thing happen to me after my surgery I blamed it on the physical therapy though aggravating my symptoms, but maybe that wasn’t it at all. Anyway, I was pretty symptom free during the first several weeks but then had some of them re-emerge. I am now a little over a year out from surgery & the symptoms are less than they were and some are pretty much gone. It is very early still for you in the recovery process. Dr. C mentioned that he wanted to wait for a year to pass before we even talk about the second decompression surgery. His hope was that decompressing my dominant IJV (which was also the side that I was having all the symptoms on) would be enough and that we wouldn’t have to do the other side. I would love to not have another surgery. However, I do know from reading on this forum though that many times both sides need to be done to have better relief from symptoms. I have not had my year scan & follow up yet. They were supposed to send the order for it, but haven’t so I’ll have to contact his office. Anyway, try not to be too frustrated. This is a major surgery with lots of healing that has to take place. Keep doing the things that are good for you to heal and be encouraged that your body is working on getting better.
This is all great to hear! I am convinced to go ahead if I can. I did not have a CTV with motion, but had dynamic angio/venogram upon which I believe Dr Nakaji based his recommendation. I spoke to Sue yesterday and they are not asking for any further testing other than the medical clearance stuff. Thank you for the question about the aneurysm. I assume he is aware of it since he got the reports from Mt Sinai where the angiogram was done. But I am going to ask about that, as I did about hEDS and MCAS and how they would handle those. I am a little frustrated not to be able to have a conversation with him until the day before surgery because I do have a lot of questions. While it is of course possible to cancel, it wouldn’t be easy to do that after all the effort involved in planning and getting there, etc. Sigh. Nothing is perfect. And everything is perfect!
I’m curious about which side gets to go first. It sounds like there are a few considerations. You– @Isaiah_40_31 - had the least symptomatic side addressed first? Both Drs Hui and Nakaji have suggested that I do the right first. My left is pretty much totally occluded, though Dr Hui said the vein is still ‘alive.’ The right is super dominant and compressed about 80%. So my assumption is that they think I might get the most improvement there? Does that sound correct? On the other hand, Dr Hui also said that they find that the decompressing the left tends to favorably impact autonomic symptoms–which are my biggest problem, and the right effects headaches more. Which is interesting.