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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Need advice moving forward
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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.

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Hey all,

Update on my case. I finished my final diagnostic test, a cerebral angiogram and venogram, on the 26th of Dec. Neurovascular doc confirmed the bilateral IJV stenosis from both my styloid processes and C1 transverse process.

In neck flexion and rotation, both my jugular bulbs and sigmoid sinus pressures doubled and tripled with complete cutoff of the jugular veins.

Most of my drainage is being rerouted through my paravertebral plexus, which they said may be part of my headaches. They were kind of surprised because it was actually causing increased pressure all the way up into the top of my brain, which they had not seen before. They will speak with Dr. Santerelli before offering treatment options but they did say they may recommend a Styloidectomy and C1 shave.

Will provide an update if I get a date and what their final recommendation is.

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Good that the compressions showed in your testing, hopefully surgery will help & you’ll be offered that…let us know when you have that next appointment!

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Would you be having surgery w/ Dr. Nakaji, @avarj? I’m sorry your compression is so severe but it’s great that it demonstrated you clearly need surgery!

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If I am offered the surgery, it would be with Barrow Neurologic Institute. If I am not offered, I will be consulting Dr. Nakaji for a second opinion.

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Update:

Barrow has scheduled me for decompression surgery with Dr. Lawton. They are weary of doing both sides at once, so I will be starting with my more symptomatic side. If symptoms persist, they will do the other side. It will be a combined procedure of styloidectomy and C1 shave.

They have explained that there is no guarantee it will work, but my testing shows severe enough compression and venous congestion that it’s better to free up the area then to not do anything. After talking with Dr. Nakaji’s office, it seems both offices share this sentiment, so I will be staying with Barrow, since Dr. Lawton will be the one doing the procedure.

My surgery will not be for a few months, but I will share my experience once it is done.

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Thank you for the update, @avarj. We don’t know of any US doctors who do bilateral IJV decompression, styloidectomy & C1 shave & didn’t know Dr. Lawton had previously done those. Your recovery will be somewhat easier only having one side done at a time. It can take 6 months or more for symptoms to settle after a decompression surgery so please don’t expect to wake up from surgery feeling cured.

Please let us know your surgery date when you get one. :blush:

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I’m glad that you have a surgery plan, & good to know another doctor who’ll do a C1 shave…hope your surgery date comes round soon…

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@Isaiah_40_31 from what was explained to me, Dr. Lawton is very picky. They did say it was not a cure all and it could take up to 12 months before I notice any significant changes. So far, they have been very upfront and honest about it. They even let me make the decision of which side to decompress first.

At the end of the day, they told me only those people with obvious vascular disturbances would be considered because of the risks associated with that area of the spine.

@Jules thank you! I am hoping they don’t cancel it but they didn’t say I need to consult with Dr. Lawton to get scheduled. They are scheduling it now and I consult with him to get more info about the procedure, so fingers crossed it all goes well.

This whole process has been an uphill battle to not only be believed but to get to the right doctors. I was very fortunate to get Dr. Andrew Ducruet, a cerebrovascular surgeon, who understood the condition to conduct my angiogram and venogram. He was the one who had me in very specific positions to capture the compression that all prior doctors did not. He really advocated that I had a problem and it got me to where I am now.

I know a lot of folks struck out at Barrow, but there seems to be more knowledge of this condition now and they flat out told me when patients come in with suspected ES, a clue to them is how difficult it is for patients to explain symptoms. I’m hoping this helps more people in the future.

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I’m glad they’re realistic about the healing time frame, @avarj! Many of our members start noticing positive changes well before the 1 year post op mark, but there have been a few whose brains/bodies took longer to realize the benefit of the surgery.

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Thanks for your info, I’m sure it’ll be very helpful, and I have updated the Doctors List. :hugs:

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Hi @avarj,

I hope things are going well for you.

I just had a quick question about your catheter venogram with Dr. Ducruet. I am scheduled for the same procedure later this month. If you don’t mind sharing, I was just curious if they entered via the femoral artery (groin) or radial vein (wrist)? As I understand it, they can do either.

Someone chimed in on my thread, saying Dr. Mehta did the procedure via the femoral artery so I expect Dr. Ducruet will be the same, but I am curious.

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Hey there.

I did both an angio and venogram at the same time, so they went through both areas. They used the radial vein for the venogram. The procedure was about an hour, with about 30-45 of pre and post procedure prep. All in all, I was there a few hours before the procedure and about 2 hours after, to monitor for any adverse reactions.

It was very smooth, though. The nice thing is they will know the results immediately. Dr. Ducruet met me in the post-op bay about 20 minutes after the procedure and let me know what he saw and possible recommendations.