@Isaiah_40_31 @Jules your support to advocate for myself really paid off. Thank you so much.
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Brilliant news @Chrickychricky , so pleased for you, not too long then! 
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@Chrickychricky @Isaiah_40_31
How the heck do you get someone to order an IR angiogram wtih manometry for you? I am at Barrow - just discovered elongated styloids on my own this week, and have been referred to Dr. Lawton by my Neurologist (as of yesterday).
I would honestly like the opportunity to consult with Dr. Nakaji, as he seems to have the best experience re: vES/IJVC between the two. I just don’t know how to get an IR A w M.
In the meantime, my ENT here in Tucson has ordered Dynamic CT w Contrast of Head/Neck/Chest w 3D Rendering.
So - at the moment, I am toggled between 3 doctors (HA Neuro, Dr. Lawton, my ENT), but really want to have a shot with Dr. Nakaji.
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@Ladymaestro1 - Welcome to our forum!
In my experience, an angiogram w/ manometer doesn’t always need to be done. It’s often a follow on after the CT with contrast if there isn’t sufficient evidence of compression from that, but there are symptoms, or if there is a question of more areas of vascular compression than can be seen in the CT scan. If it’s something Dr. Lawton or Nakaji want, they would order it after seeing your CT scan & prior to doing surgery.
In some practices where two doctors are the same specialty or do the same specialized surgeries, if a patient sees one of the docs, that patient cannot later request to see the other doctor as it seems some medical ofc policy forbids it. I don’t know if that’s standard practice or unique by office.
One of our members ran into that problem with Dr Milligan’s ofc in Phoenix. She wanted to see Dr. Milligan but had already seen one of his associates & ofc policy forbid her to even get a second opinion from Dr. Milligan. It was a very distressing situation.
I would expect you can cancel your appt w/ Dr. Lawton if you’ve made one & ask to be referred to Dr. Nakaji instead if he is your preference.
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I asked my Neuro to change it, but she wouldn’t. I haven’t made any appts yet. I’ll see how things shake out after my imaging and discussion with my ENT.
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@Isaiah_40_31 Talked to my ENTs office. They said it’s best to cancel current CT scans order and wait to see what Dr. Lawton orders,so went ahead and canceled that.
She also said I could contact my PCP and ask for a referral to Dr. Nakaji.
I think at this point, I am going to stay within what I already have going at Barrow - since my Neurologist would like to keep all of my care in-house at BNI with what she’s doing to try to help me. If Dr. Lawton doesn’t want to image/treat me, then I can get that referral.to Dr. Nakaji.
@Chrickychricky So happy you are getting your surgery soon with Dr. N. Please let us know how it goes! Prayers for safe and smooth sailing!
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Great news that your surgery has been moved up! It definitely helps to keep checking in with the scheduling people. I was able to get my surgery completed in a much shorter time than I was originally told due to a cancellation. It happened a bit quickly for me, but at least I didn’t have too much time to be nervous before the surgery. I hope that everything goes well with the surgery & that you have a quick recovery!
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I’m glad you’ve had good communication with your ENT’s ofc, @Ladymaestro1. I’m honestly relieved that you’d be able to consult with both Drs. Lawton & Nakaji if necessary. That is HUGE!!
Your current plan sounds very good. Keeping all your care “under one roof” will give better continuity of treatment. I’m so glad this is working out for you.
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I’ve been off the grid for a week and just seeing this. I has my IR angiogram with manometry at UCSF with Dr. Amans. I met with several docs on the list and for me personally Dr. Nakaji was the best fit. I knew it instantly. He would not have seen me for the consult without the angiogram with manometry. He was more interested in the pressure gradients than anything else. Dr Amans is great and definitely one of this group of people trying to
Understand venous hypertension
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