Update from Arizona at Barrow Institute of Neurology and Dr. Nakaji's Office

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Hey all,

Just wanted to post an update for anyone that may be traveling to Phoenix, AZ for their treatment.

First off, I am really impressed with both Barrow and Dr. Nakaji. Multiple ENTs in PHX dismissed my calcification and insisted a compressed IJV is completely normal on a CT, but both Dr. Santarelli (from barrow) and Dr. Nakaji identified it and spoke with me about what COULD be happening.

They did not dismiss me outright and I will be getting a CT Veinogram and multiple other cerebral vascular and neurologic studies to understand how the compression and irritation is affecting my system. This is important because, as we all know, we just want those things taken out. If your case is super bad, then yes they just do that. If not, there are possible compensatory mechanisms they need to understand before just jumping into surgery, so this investigation is a good thing. I am scheduled to do my rounds through Barrow’s Neurology campus to see if any perm damage was done and then discuss how to address the issue. I will still be keeping in touch Dr. Nakaji to confirm the treatment plan but I am pleasantly surprised at how Barrow tackled this.

I know some folks had bad experiences with Barrow, and I have a ways to go before they will agree to a Styloidectomy, but just wanted to provide some context for anyone in this situation. I was so prepped to fight for a diagnosis but they seem willing to ATLEAST do the necessary testing to confirm any secondary mechanisms in play and come up with an appropriate corrective action. For example, I also have cervical spine issues which may be making all of this worse, so they need to do their homework and get a comprehensive understanding of my situation.

Word of advice, don’t just walk in half baked. I prepped about 5-7 pages of medical history, symptom charts, past treatments and outcomes, why I would like to discuss the possibility of Eagle Syndrome and my expectation for the appt. That seemed to keep us on track because he, quite literally, just came in and asked why I thought this was Eagle Syndrome, spoke about the symptoms I wrote down, and made sure I was ok with him verifying so we don’t do blind surgeries. All-in-all, I don’t feel dismissed or ignored. I finally feel like I am being taken seriously and the slew of testing he ordered, I think, proves that.

Let me know if you have any questions and I will do my best to answer.

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You’ve offered very good advice for our members as far as appt. prep goes, @avarj! I’m glad it paid off for you, too! It’s good to hear how thorough Barrow is being before committing you to surgery. We have had members who did have bad experiences w/ that group, mostly surrounding surgeries that were scheduled then cancelled last minute as they were suddenly deemed unnecessary by the surgeon who planned the surgeries. Very disheartening for the patients to say the least.

Please keep us updated as to what you learn & especially if/when you get a surgery date.

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I’m glad that you found them helpful, & that he listened to your request to look at ES. Other members have found sometimes doctors aren’t comfortable when a patient comes into an appointment well informed & prepared, so great to hear of a doctor who treated you with respect!
Good too that you’re happy with the testing being done to find out exactly what is going on & how much the styloids are impacting your blood vessels, will be interesting to hear how you get on!

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I have met my fair share of those doctors. I generally offer my hypothesis, highlight that the previous “well-informed” doctors did not solve the issue and that I am bringing this up so they can provide context to my research. I make it clear I am not trying to step on their toes and rely on their expertise to guide my body to heal, but that involves a collaboration.

Also, I am a investigative person so this is also just part of my quirk.

When I explain it that way, they seem to drop the defensive act and either ignore or work with me.