We’ve had a few discussions about sedation for the angiogram/ venogram, as some doctors believe that the pressures are not as accurate when you’re more heavily sedated…They can still do a dynamic one by turning your head themselves if you are under though. Have you got an appointment for one?
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I really appreciate your replies @avarj and @Isaiah_40_31. I feel quite a bit better about it now. Thank you.
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Not yet, trying to find a doctor who does light sedation and also does positional . I don’t want to have to do this twice.
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@Chuck Some doctors, like Dr. Amans and Dr. Hui (unless they have changed their positions recently) believe that pressure gradients are impacted by any level of sedation and you risk a false negative with sedation. I did mine without sedation and while I was anxious, which I managed with my breathing and there was no pain.
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@Chuck - I believe @avarj had his venogram done w/ light sedation & was able to follow instructions to turn his head when requested. There are a couple of vascular surgeons in AZ who use light sedation & possibly at least one in CO who will do it w/o sedation.
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Just had my consultation with Dr. Nakaji.
First off, he is incredibly thorough and helped sum up my experience in ways I have been unable to do with previous doctors. He is intimately aware of the vague and disabling symptoms that is so often missed. He is also the ONLY doctor to mention the involvement of the spinal accessory nerve, vagus nerve and autonomic disturbances that can accompany this condition. He was even explaining which side of the vagus influences what, ie. right side - heart vs. left side - gut.
He did confirm he only removes up to about 3 mm or so from the skull base, as going any higher does not impact blood flow or nerve impingement and the risks of causing complications in the facial nerves is much higher. However, he explained this procedure is not just about removing the calcified ligament. It’s about testing surrounding muscles and ligaments for adhesion and tightness and relieving that as well. He even mentioned he has a method for decompressing the carotid sheath, as it can also be restricting the vagus nerve and other structures within. His approach seemed to be filled with little quirks he has learned over the years and has developed his own modified way of performing the surgery.
He was able to articulate this and answer any questions I had, as if he was a professor explaining to a student. I never felt stupid for coming prepared with my own info and he thanked me multiple times for asking questions to ensure I understood the entirety of the situation. Finally, he openly acknowledged that to get to him, I most likely had to do my own research and helped fill any medical gaps I had, again without making me feel out of my element.
10/10 would recommend.
I still have my follow up with Dr. Lawton, at Barrow, but unless he fills me with the same level of confidence, I will probably go with Dr. Nakaji.
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I’m glad your consultation with Dr Nakaji went well and that he was so helpful, that’s great to hear! Good to meet with a doctor and feel listened to, as well as feeling confident with 
@avarj - Thank you for the very positive report about your consult w/ Dr. Nakaji. I’m so glad to know he was thorough, patient, & thoughtful during your visit & helped you feel confident he could help you.
He’s been well rated by many of our members & their surgical outcomes have been great!
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Wow, that sounds incredible. I have my catheter venogram with Dr Ducruet next week and I have an appointment with Dr. Nakaji to review the results later that same day. I am hoping for a similar experience.
Did Dr. Nakaji offer you an appointment for surgery when you met with him? Did you just ask for more time to consider it and/or second opinions?
I have heard enough about him (and am miserable enough) that I will book surgery immediately if it is offered.
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@Tusker I hope that your venogram goes okay next week, & that Dr Nakaji will consider you for surgery!
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He did offer the surgery date at the appointment. I told him I would reach back out to schedule and he was more than happy to accommodate that.
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@avarj thank you for confirming!
I just read through the whole thread again. Am I mistaken or did you already have surgery scheduled with Dr. Lawton? Did something change or did you just happen to schedule an appointment with Dr. Nakaji while you await surgery with Dr. Lawton?
Just curious. I was basically planning to do the opposite. Hopefully Dr Nakaji offers surgery and I would follow up with Dr Lawton in the meantime for the second opinion. (I also managed to book an appointment with Dr Lekovic at UCLA next week.)
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I was on the list for a surgical consult with Dr. Lawton, but the surgery was not actually scheduled yet.
I met with both Dr. Nakaji and Dr. Lawton and decided to schedule with Dr. Nakaji. Here are my thoughts about both:
Dr. Nakaji
Very impressed. First of all, he is incredibly empathetic to those of us that suffer with this. From start to finish, I felt very comfortable with his approach.
After reviewing my scans and testing, he brought up my CT and walked me through the compression and what was likely causing my symptoms. In my case, its a mixture of the calcified stylohyoid ligament, other muscles and ligaments and my C1 transverse process. He explained that to truly decompress the jugulars, all three would need to be addressed. He has his own methods of testing the area to ensure the tension is relieved and the jugulars have room to breath.
Also, he specifically said the odd, systemic symptoms I have been experiencing can be caused by an irritated or mildly compressed vagus nerve. He used the example of many of his patients that have IBS or GI symptoms resolve post-op, which confuses most doctors but he explained how the vagus nerve contributes to gut motility and sensitivity. The nerve sits in the carotid sheath, between the carotid and the IJV, and he explains that it’s one of the things he tests while in surgery, to ensure the entire sheath is decompressed, not just the IJV. He acknowledged that the symptoms associated with this nerve can be dysautonomic and I can’t tell you how much relief I had when he explained how a lot of my symptoms did seem like dysautonomia, or like my baseline homeostasis was just off and how this can be invisible to those that don’t know how to identify it. I could have kissed the man!
He explained the risk of doing both sides in one surgery and we both agreed to start with my symptomatic side, first. This was an important part of the conversation because he let me choose where to start. I have a primarily right-sided jugular drainage pathway but my left side is the side with pain and pressure. Although my right side is slightly more occluded, he left it up to me and agreed to start on the left side.
Lastly, I asked how many surgeries he has done and he explained there are doctors that do more of them but patient selection was just as important as the surgery. The week I had my consult, he had already done two of the surgeries and he was so articulate in his explanations that he clearly does these enough to give a lecture.
All-in-all, wonderful experience.
Dr. Lawton
The Dr. I had worked with at Barrow, Dr. Santarelli, recommended me for surgery and said it was getting scheduled. Then, I was told I need to meet with Dr. Lawton so he could walk me through the surgery. Then, when I asked when I could schedule it, I was told that Dr. Lawton still had to approve it, even though I was already told I would be having it. This was a little confusing but not too annoying.
Once I was in my consult, Dr. Lawton was not very confident about the condition.
He explained it’s not like correcting an aneurysm or removing a tumor. This surgery was not corrective, but more explorative to see if symptoms would be relieved. In his experience, it was hit or miss but given my test results, I would be a candidate for the surgery.
He explained they would go in and remove the bone to decompress the area. No mention of C1 or additional factors of compression. This was surprising because Dr. Santarelli did mention I would need the C1 shave. When I asked about it, Dr. Lawton said they would determine during surgery. This kind of rubbed me the wrong way and I didn’t feel very confident about the interaction.
I was definitely not dismissed, but not at all what I was expecting.
At the end of the day, Dr. Nakaji felt like “my doctor” vs. another surgeon. He was so much more versed in the literature of Eagle Syndrome then any other doctor I had seen and it was so validating to have the invisible struggle acknowledged and have real, physiologic explanations for what I was experiencing. There are no guarantees but what he was saying just made sense. It clicked.
Barrow seems to be severely understaffed and it shows during interactions. I know their surgeons are top tier, but they just seem overwhelmed. Dr. Nakaji was a surgeon at Barrow and was a fellow under Dr. Lawton, so I did trust the expertise…just not the approach. Not to mention, anytime you need to schedule an additional step with them, you are looking at 3+ months out. Dr. Nakaji was much more flexible and I was able to schedule the surgery within weeks, if I wanted to.
Barrow is fantastic for many neurologic conditions, but Dr. Nakaji seemed more experienced with ES.
My surgery date with Dr. Nakaji is set for May 27th.
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I’m glad that you felt confident with Dr Nakaji, and that you have a date for surgery! Will pray that all goes well for you 
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Nice explanation of your experience with each doctor @avarj. What you’ve shared will be helpful for others. I’m glad you have a surgery date. It’s on my calendar now & I’ll pray for you on your surgery day & some before.
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I will be following right behind you on June 12th with Dr. Nakaji. I look forward to hearing about your experience!
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