Hi everyone,
I had a busy week and some great news! I finally had my angiogram and venogram with manometry with Dr. Ducruet, and visits with Dr. Nakaji and Dr. Lawton’s office.
I was coming from out-of-state for these visits and attempted to align a pre-op appointment with Dr. Ducruet. The angiogram and venogram with Dr. Ducruet the following day. Then, finally, the appointment with Dr. Nakaji later on the same day of the procedure to review the images from Dr. Ducruet. It did not go exactly as planned, but it worked out for the most part.
I wanted to share as many details here as I can to help save others’ time and resources in the future, so I apologize in advance for the wall of text. I will do my best to keep it organized and readable.
Dr. Andrew Ducruet / Barrow Brain and Spine
The medical procedure with Dr. Ducruet was a fantastic experience. He did end up going through both the radial artery in my wrist as well as through a vein in my groin. Both the procedure and the recovery have gone well so far.
Unfortunately, the postive experience with Dr Ducruet and the medical staff was overshadowed by the worst administrative “experience” I have ever encountered.
The first problem I had was simply getting any sort of hard confirmation of my appointment and procedure with Dr. Ducruet. I was driving in from out of state and had to make all my accommodations “blind”. I also requested time off work. I committed to non-refundable accommodations based on a phone call. No one could send me a single email or text message that confirmed anything until just a few days before the procedure. It was very unnerving.
Separately, I kept calling to try to understand what my cost would be. No one I spoke with could answer me or direct me to the right place. I wouldn’t find out the cost until after my consultation with Dr. Ducruet (which was the day before the procedure). I got the finance person’s contact information from the front desk at his office and called her. She promptly asked me for thousands of dollars in payment right then and there. I was not prepared for that size of payment AT ALL. To their credit, I was offered a payment plan so I could still have the procedure.
I had no idea that this size of charge was even within the realm of possibility, but I had no choice. I had already driven all the way to Phoenix. That was a very upsetting experience, but that isn’t all. Just moments before my procedure, I was pulled into another office and told I had to make a separate payment of yet ANOTHER few thousand dollars! She had no idea I had already been charged, but when I told her, she said that was a separate charge for the doctor, and this was for the hospital. That same lady at the hospital told me it’s possible I could get yet another bill from the anesthesiologist and that they had no way to know if they were in network or not. They suggested I ask the anesthesiologist directly when I met them, just moments before my procedure, while in a gown on the medical bed! This charge, too, was put on a payment plan.
I know this isn’t true for everyone, but the money I paid was a life-changing (crippling) amount of money, and I had absolutely zero chance to plan or prepare for it. I cannot imagine a worse way this could have been handled if I tried.
But even that is not the end of the story. I had an appointment with Dr. Nakaji later that day. This was known by everyone at both offices the entire time. That appointment had to be rescheduled because the images were not sent to his office in time. So, I got to stay in Phoenix two extra days over what I planned to see Dr. Nakaji on Thursday. That appointment was around noon. I got there at about 9:30 am and talked to the receptionist to find out the images STILL WERE NOT SENT!!! I was at risk of another appointment being rescheduled! I frantically called the hospital, trying to get someone to help. I got transferred all over the place and finally got a hold of someone who could help. The images were sent just in the nick of time.
It was honestly one of the most unprofessional and inconsiderate experiences I have ever had. If Dr. Ducruet and all of the medical staff weren’t so incredible, I would tell everyone to avoid this place like the plague.
To anyone who is reading this and hoping to see Dr. Nakaji, save yourself the grief and just book the procedure with Dr. Mehta. There is a reason I booked it with Dr. Ducruet, but, in hindsight, not a good enough one. For what it’s worth, the receptionist for Dr. Nakaji told me that the person in charge of sending those scans told him that they were “understaffed” at the moment. It is entirely possible I caught them at a very bad time.
Dr. Peter Nakaji
It’s not all bad, though! I did get the imaging done and got to meet with Dr. Nakaji. That was a truly amazing experience.
First off, he confirmed, with certainty, that I am a good candidate for surgery. He brought up my images and showed me everything. I had some minor collateral veins, but not nearly enough. While I do have bilateral compression, Dr. Nakaji believes there is a good chance my symptoms will resolve completely by just doing the right side. He said that is the case for most patients with jugular compression. He said even if that was not the case, he would offer to do the second side as soon as 8 weeks after the first procedure. He said most people know after 8 weeks if the second side will be necessary.
I had several pages of questions for him, and he took the time to answer each and every one. It was the very best experience I have ever had with a doctor. Here are a few (paraphrased) questions/answers from my discussion with him:
1Q: I have bilateral compression. I asked him if he would consider doing both sides in the same surgery.
1A: He doesn’t recommend bilateral surgery for anyone. If both sides are operated on at the same time, then both sides will be swollen at the same time. Your brain would have no functional pathway to compensate for the blood drainage. He also said you can experience nerve weakness. If you just do one side, that means you might be a little hoarse. If you do both sides, you could lose the ability to swallow and would need a feeding tube. Until the nerves recover, you would be at risk of aspirating fluid into your lungs, which could lead to pneumonia and/or death. Lastly, most people don’t need both sides, and usually, you don’t know until after you have one side done.
2Q: I asked him what he calls this condition. I specifically asked him what he thought about the name “Vascular Eagle Syndrome”.
2A: He said he is “very, very, very conflicted” about the term “Vascular Eagle Syndrome”. He said classic Eagle Syndrome is primarily a nerve issue where the styloid compresses the carotid sheath, leading to throat pain and nerve inflammation. He thinks the phrase “Vascular Eagle Syndrome” causes significant confusion. People with either variant go looking for information about “Eagle syndrome” and see information about the other variant. He said that while his group originally coined the term “stylojugular venous compression syndrome”, he thinks “stylo-cervical compression syndrome” is a little more appropriate. He then said that because he increasingly sees compression driven by other factors (muscles, cartilage, etc). He thinks it could be most appropriate to refer to it as subcranial venous compression syndrome.
3Q: I asked how many surgeries for decompression he has done.
3A: He said he hasn’t counted them in a long time, and he needs to count them again. He said with certainty that he has not done the most. He said the surgeons who do the most cases don’t select patients carefully enough and “just do everybody”. He thinks this leads to some people getting surgery who do not need it. He said he has done a lot of them, but only with careful patient selection.
After I met with Dr. Nakaji, I met with his surgery scheduler, Nancy. Just like everyone else at Dr. Nakaji’s office, she was great! She explained that Dr. Nakaji works with everyone’s insurance to get whatever he can from their insurance as an out-of-network doctor and then makes sure the patient only ever pays out-of-pocket what they would have paid if Dr. Nakaji were in-network for them. He accepts this as payment-in-full without any balance billing. Nancy had told me this earlier, but I didn’t really understand it at the time. I had almost removed Dr. Nakaji from consideration when I learned he was out-of-network for me, but I am VERY glad I did not. If you are thinking of or have eliminated Dr. Nakaji from consideration because of insurance, DON’T!! Talk to him first!
Again, a great experience (so far) with Dr. Nakaji. Highly recommended.
Dr. Michael Lawton
Someone from Dr. Lawton’s office called me the day after I met with Dr. Nakaji. They told me Dr. Lawton reviewed the scans, and even though he agreed there is stenosis of my jugular veins, he did not think I was a good candidate for surgery. When I asked why, the person could not articulate very well why I was a poor candidate, just that I was not a “slam dunk” case for “Vascular Eagle Syndrome”. (I wanted to emphasize that Dr. Lawton’s associate specifically used the term “Vascular Eagle Syndrome” just to further juxtapose everything I heard from Dr. Lawton against what Dr. Nakaji told me.)
I told him that Dr. Lawton’s conclusion was the exact opposite of Dr. Nakaji’s when reviewing the same images. He just said different surgeons have different criteria for recommending surgery. He said the people Dr. Lawton recommends for surgery have more extreme findings, such as complete occlusion of the jugular veins and/or severely elongated styloid processes.
I asked him what Dr. Lawton thinks I should do. I asked if I should get more imaging or see a different specialist. What I should do next seemed like an afterthought. Like he had not considered that. Then he asked if I had seen a neurologist. I said “yes”, and to no effect. He said a neurologist should be able to help me. I asked if Dr. Lawton could recommend anyone specifically, and he said no.
About Dr. Lawton, I will just say that I was not particularly impressed. Throughout the entire process, I never interacted with him directly. I was never offered an appointment with Dr. Lawton.
“Dismissed” is how I would describe my interaction with him.
).