Heading to Phoenix today for my appointment with Dr. Nakaji. I hope it proves to be a helpful trip. At this point I feel clear that I need the surgery and I’m just trying figure out which surgery is the right one for my situation.
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I hope the trip is useful, let us know how you get on…safe journey 
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I also hope you have safe travels & a productive appointment with Dr. Nakaji @Chrickychricky! Looking forward to hearing what you learn from him.
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Thanks for the support @Isaiah_40_31 @Jules.
Just got back from Phoenix last night. Both Dr. Costantino and Dr. Nakaji have accepted me for surgery and I decided to go with Dr. Nakaji despite having to wait longer for the surgery, August 19 versus July 1. Mainly, Dr. Nakaji has been working in this area since 2004 and is part of the group of doctors who are really trying to understand venous congestion and develop best practices for diagnostics and treatments. For me personally I prefer that, other than resecting the styloid and C1, the rest of the surgical plan will be determined in the field based on what he sees. He said he has done a lot of work with 3-D modeling and found that the styloids do not have to be resected to the skull base. In most cases some styloid can be left with IJV still freed up and this helps prevent damage to the facial nerves. I asked about styloids growing back since I have seen that pop up on the forum and he said he has not seen that himself but can see how it could happen if the ligament isn’t properly removed.
He is very selective of surgical candidates (as are the other surgeons I consulted) and if anyone is considering him as a surgeon you for sure have to have an IR angiogram with manometry to get a consultation. I consulted with 4 surgeons (Samji, Osbourne, Costantino and Nakaji). the other 3 said they would start with the right because it is the dominant side. Dr. Nakaji thinks we should do they left because it is much worse and if we can open that up combined with some flow I already have on the right it might be enough to relieve the symptoms. I have always felt the same way so that was another reason I decided to go with him. Fingers crossed to be able to get in earlier than August 19!
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I’m so pleased that you’re able to get surgery, and feel confident with Dr Nakaji! That’s really good news, I hope that you can get in sooner, I guess you’re on the cancellation list?
Yes, on the list. And I will likely pester the surgical coordinator from time to time to keep me in mind.
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That’s a good plan @Chrickychricky! A number of our members have gotten surgery dates moved sooner by calling to check in regularly w/ the scheduler for whichever surgeon they were seeing.
I’m glad deciding who you want to do your surgery is behind you & seems like it was a fairly straightforward decision once you’d had all your consults.
I appreciate the information you provided about Dr. Nakaji as we hadn’t heard much about him previously.
I’ve put your surgery date on my calendar to remind me to pray for you especially that day.
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@Jules and @Isaiah_40_31 Your advice has already paid off! New surgery date is July 29, so 1 month sooner. Thanks!
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Brilliant!
That’s GREAT NEWS!!
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Dr Nakaji did my first surgery. For me, he also wanted to do my worst side and said he feels if you have at least one good side that should be enough.
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@Susie - How are you feeling now? I’ve forgotten whether you had a second ES surgery or not.
I am doing okay. The first surgery completely resolved my symptoms, but unfortunately, after 5+ years they returned. I had a second surgery in November 2021 by Dr Lawton and Dr Santarelli at Barrow in Phoenix. It didn’t totally resolve my headache, but it cut it down to a tolerable level (from an 8-9 on the pain scale down to a 1-2). I wonder if they had shaved my C1 like Dr Nakaji did, if it would have taken the pain down to a zero. But a 1-2 isn’t bad.
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I remember you posting about your surgery w/ Drs. Lawton & Santarelli, now. Thank you for the reminder. I’m glad you’ve had notable improvement in your pain level, but you do pose an interesting question about the C-1 shave. I’m sorry you had to have a second surgery. Dr. Hepworth has noted that the IJV system is circular & often having just one IJV open isn’t enough when both are compressed. We’ve had enough members who’ve needed bilateral decompression to feel more normal to validate Dr. Hepworth’s opinion (& yours!).
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Dr. Nakaji told me (but I don’t think there is published data on this yet) that the C1 notch is as essential as the styloidectomy for VES patients. I also remember hearing one of the doctors at the venous congestion webinar say " you compensate until you can no longer compensate" regarding symptom severity. So perhaps in opening one side and getting increased flow allows one to compensate well enough to alleviate or improve symptoms until you can no longer compensate again (for us bilateral types) and need the other side done? He told me I have a little flow on the right so he wants to do the left and see if when that is open combined with the low flow on the right is enough. Hopefully it will be but I can certainly imagine a scenario in which the untreated right continues to grow and occlude causing problems to represent themselves over time.
As for headaches, the neurologist at UCSF convinced me to try Emgality for a few months trial. I have definitely had fewer headaches. I don’t think it necessarily means that the headaches aren’t from VES since VES could cause the same spike in CGRP as in a migraine. Anyway, something to look into if the headaches are troubling. It’s a once a month self-injecting pen.
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I like your perspective, @Chrickychricky. It makes lots of sense re: body compensation “until you can no longer compensate” for venous congestion. I watched the webinar close to the time it was released on the internet so don’t remember some of the details such as that one.
The information about VES possibly causing the same spike in CGRP as a migraine is also interesting. I’m dealing w/ Meniere’s Disease & was told by my ENT that recent studies are showing MD symptoms have the same brain triggers as migraines so MD is being looked at as a sort of silent migraine. I’ve never had a problem w/ migraine level headaches (except as a post angiogram symptom for a few days) so that was quite interesting to me.
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So interesting you mention post angiogram headache @Isaiah_40_31 . I got terrible head pain each time Dr. Amans released contrast on the arterial side of the study (he did veins first and then arteries). He said that sensitivity to the contrast can be an indicator of migrainous activity in the brain. He referred me over to the Complex Neurology Clinic at UCSF to have a neurologist look at all my symptoms and history to see if it might be anything other than VES. Like you, I have never had migraines and would not describe the headaches I get as migraines. She explained that migraines are a “threshold” illness, some people cross over this threshold and it triggers symptoms and they have trouble getting back under threshold. She wrote vestibular migraine as a possible diagnosis for me and also said that headaches aren’t always part of it. So I agreed to try Emgality because injection site reaction is basically the only common side effect. It would be wonderful if a medication like this could help you calm MD. I highly recommend Dr. Waung at the clinic mentioned above. Maybe your ENT could refer you? It would be one visit that takes several hours so you don’t have to worry about making the trip more than once.
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Since I was asleep for my angio/venogram, I don’t know if I had an immediate reaction to the dye as it was released, however, my daughter is a nurse & when I mentioned the visual migraines as a post op symptom, she said they’re caused by the dye & generally stop occurring once the dye is shed from the body. Made sense in my case.
I’ve had two serious brain injuries from cycling accidents & have counted my blessings as I’ve had no post concussion syndrome problems except the hearing loss & Meniere’s diagnosis. Many people end up with chronic migraine activity after TBIs so I feel very fortunate as hearing loss, though annoying, isn’t debilitating like migraines can be.
Thank you for sharing Dr. Waung’s name. I will request a referral.
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Great news to report! I just got a call from Dr. Nakaji’s scheduler and my surgery date is being moved up to July 10th!
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YAHOO!! YIPPEE! GREAT NEWS! 
I’m happy for you @Chrickychricky!!