Hi all, I hope everyone is having a good day symptom wise.
I am considering Dr. Nakaji as well as others (Hepworth, Costantino, Hackman) for IJV decompression (styloidectomy + C1 shave). My sense is that Nakaji does these procedures less often than the others, and he is quite selective about the cases he takes, thus his surgery schedule is more available (January, versus others booking out to the fall at this point). That’s a long time to wait given the day to day pain and discomfort I’m dealing with. My main symptoms are headaches and head pressure.
Is it worth waiting potentially 8-10 months to go to a higher volume surgeon?
For anyone who has gone with Nakaji recently for IJV decompression, did you experience improvement in your symptoms (and what were your symptoms)? He mentioned some facial numbness (ear, jaw) being a possibility - did you experience that, and do you still have it?
He mentioned some narrowing/compression of the IJV between C4-C6 where the jugular is compressed against the carotid (inside the carotid sheath), with the solution being to surgically open/release the carotid sheath. His concern was that while the styloid/C1 may address compression at that level, there may still be compression (via the carotid/carotid sheath) lower down. Is that something anyone else has discussed or had performed? To me, it seems like something we would not want to do right off the bat, but perhaps consider down the road if the styloidectomy/C1 does not offer relief.
Appreciate your thoughts and hope everyone has a great weekend!
Dr. Nakaji is a neurosurgeon & is very experienced w/ styloidectomies/IJV decompression surgeries & gives priority to these surgeries thus the reason the wait to see him is shorter. The other doctors you mentioned are all ENT surgeons who give somewhat equal priority to cancer surgeries, sinus surgeries, tonsillectomies & other ENT related surgeries. He is, as you mentioned, somewhat selective as to the patients he takes as he doesn’t want to do a surgery that doesn’t produce a positive outcome, so he declines patients where he thinks surgery might not help.
Dr. Hepworth travels to Hawaii 2-3 times per year to teach other doctors his surgical techniques & to operate w/ Dr. Hui on especially complex cases, both ES & non-ES related. He’s gone for a week or more each time which pushes his more local patients’ schedules forward. Dr. Cognetti prioritizes his cancer patients & only does ES consults & surgeries once a month. Dr. Costantino does research & other projects which take him out of the patient part of his practice for part of the year.
It’s my personal opinion that decompressing one area of your IJV while leaving another section compressed doesn’t make sense. As long as there is a section that isn’t fully open, there will be a blood flow issue & likely the resulting symptoms. If you’re going to get your IJV opened at all, get it done all the way. I can assure you that you won’t want to go through the surgery a second time if leaving the job half done doesn’t produce the results you’re hoping for. That would be something to discuss w/ Dr. Najaki.
@blue Dr. Nakaji is one of the early day originators of this surgery back in his days at Barrow. He is for sure a high volume operator. Once in the surgical field he will look at all of the possible points of constriction and address them on an as needed basis. If he doesn’t think a structure is causing a problem, he will leave it alone. I can honestly say that Dr. Nakaji saved my life. I’m 14 months out from my second surgery. I have the tiniest bit of numbness on one side of my neck just under my jaw that continues to improve over time. I’m pretty small and he had to do a lot of retraction on that side to get to the styloid and C1 causing more than average nerve irritation/damage.
The doctors you mention for VES are experienced, apart from Dr Hackman- he’s done lots of successful ES surgeries, but doesn’t have the experience with VES to decompress blood vessels. All the doctors who we suggest as being the most experienced with VES have done many successful surgeries, but there are occasions where for some reason people’s IJVs don’t stay opened up & then balloon angioplasty or stenting might be needed, or a revision surgery, but they have all equally had good outcomes, so I wouldn’t say that Dr Nakaji does the surgery any less than the others. @Isaiah_40_31 has given you a good explanation for this.
And a good VES surgeon should look for other compressions, & remove these during surgery (like Dr Costantino removes the posterior belly of the digastric muscle if that’s causing compression), personally I would trust his judgement during surgery & if the fascia is causing compression lower down & he feels it needs removing then I would agree to this. The more surgeries you have, the more risk of scarring there is, which in itself can cause compression, but I can understand you don’t want to have something which you feel might be unnecessary…
Dr Nakaji likes to do a CT venogram pressure manometry before he agrees to surgery, unless you’ve already had that? There have been some discussions about what the testing involves if you’re interested, with Dr Mehta.
Hi @blue, I had my first surgery with Dr Nakaji 3 months ago - unilateral IJV decompression with C1 transverse process reduction and carotid sheath fasciectomy (opening up the carotid sheath). I posted a bit on here about my experience with him; if you’re interested in more details you can look up my previous posts. My experience has been super positive with him. My symptoms are slightly improved, particularly my brain fog, energy levels and head pressure when exercising. I never had headaches so no change there except for a 2 week period post op where I had some one sided migraines that resolved completely. Other symptoms still remain but I hope these will resolve once I have my second side done (which is also severely constricted).
In terms of the numbness, immediately post op I had numbness above the incision and over a small patch of skin on my cheek and ear lobe. The area of numbness has been continously shrinking, and has never been too bothersome to be fair. It’s now about 20% the size it was immediately post op. Importantly, I had no loss of muscle control anywhere on my face (or shoulder as it sometimes happens) which was the most important thing to me.
In terms of the carotid sheath fasciectomy, as far as I know, Hepworth and others also do it if necessary. For me it was absolutely necessary, as even with all other compression sources removed, the carotid sheath was hardened and tightened, maintaining the compression on the IJV.