@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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@Chrickychricky - I had you on my calendar today for your second surgery w/ Dr. Nakaji. I am praying it went as planned & you are now recovering. Please post an update when you feel up to it.
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@Isaiah_40_31 Thanks for checking in. Just shy of 24 hours post surgery and doing well. The surgical plan was a righted sided styloidectomy and c1 shave but that changed once Dr Nakaji was in the field. The spinal accessory nerve an a venous plexus were draped over c1. He didn’t want to have to reduce the plexus since drainage is already the issue plus he identified that c1 wasn’t the offender on this side. It was more the styloid, a very tight carotid sheath and the myhyoid, stylohyoid digastric muscles. He was able to take out enough styloid that he could feel with his finger that it was not impeded by c1 while moving my head around. He did a fasciotomy and some muscle resection. I’m saying all this detail because I think it shows how important it is to have the surgery with someone who has a lot of experience with it. Prior to surgery he said that ‘the group’ (Hepworth, Fargan, Higgins, et al) have identified 19 things to look for in the field that might be contributing. Post surgery he told me that just a few years ago doing a fasciotomy wasn’t on anyone’s radar. He feels like the group is really honing down on a best practices approach to this surgery.
Anyway, he was able to visualize excellent flow through my IJV and feels very hopeful for me. So far the pain isn’t as bad as the first surgery. My vagus nerve got jangled a little but that happened last time and got better in about 3 weeks. Hopefully they will discharge me this morning, I more night at the hotel and back home Wednesday. How about you @Isaiah_40_31 aren’t you up next?
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So pleased that you’re through with surgery and not in as much pain so far…and so pleased for you that he was skilled enough to do the fasciotomy & muscle resections to help with compressions. It’s so encouraging that these doctors are sharing info, techniques and working together to improve surgical outcomes! Take care, hope that you heal well & keep us posted how you’re doing, praying it’s successful for you 
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Thanks so much @Jules I’m so grateful for your wisdom. You and @Isaiah_40_31 have kept me going. Dr. Nakaji just stopped by on rounds and gave me the green light for discharge. It really is so great that this group of doctors are collaborating. My insurance is still denying coverage because they want me to see someone in network despite not being experienced with this specific surgery. What happened in surgery yesterday is exactly why you need someone like Dr Nakaji. Prior to surgery I asked his fellow how much of the surgery does Dr. Nakaji let him do and he said that it’s such a niche surgery that he doesn’t do much more than observe. Anyway, if I lose my battle with the insurance so be it because having this surgery with this surgeon has been life saving and you can’t put a price on that.
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I am still praying that you will get surgery covered by your insurance. Safe journey home & take care
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I would give you a thousand thumbs up on this comment. I understand that there are people not so fortunate in this world to have that option because of a variety of factors. I am fortunate enough that I can do it plus I have the back up of Christian Health Ministries if all else fails . Not a pre existing condition for me with them.
I really felt tears in my eyes reading your updates. There is hope for Eagle patients but you better get someone who knows what they are doing if at all possible!!!
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I’m so happy to read your update, @Chrickychricky! You gave information I hadn’t heard re: “the group” identifying 19 things to look for in the surgical field that might be contributing. It’s also an interesting note about the fasciotomy. I congratulate them from afar for striving for best practices with this very delicate surgery and for practicing with caution as they make new discoveries. Dr. Nakaji does sound exceptional with his surgical approach.
Excellent news that your pain level is lower this time. I hope it remains that way all the way through your recovery and I’m glad to know you’re being or have been discharged. There’s no place like home to recover from surgery!
My surgery is slated w/ Dr. Hepworth on 10/30, but we have two other members who have surgery with him, one on 10/21 - @harrisonboy 1 on 10/23 - @Heather. This will be Heather’s second styloidectomy & decompression surgery & harrisonboy’s first.
I’m so thankful for the doctors and patients who are willing to take risks so that protocols can be developed that will help those with unusual health challenges.
I’ll pray for your safe travel home & for a smooth recovery.
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@Chrickychricky hello! You mentioned that your insurance may not cover the costs of the surgery. Do you know how much Dr. Nakaji’s fee out of pocket would be? I wanted to book a consult with him for my husband, but he doesn’t do telehealth. Flights to AZ are cheap from where we live so I’m considering in-person but I have no idea what his surgical costs are. Thanks!
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Hi @Val7426 We haven’t gotten all the bills in yet. He does the surgery at Banner University Hospital so there are all the hospital fees, the surgical suite an 1-2 overnights. Then there is the anesthesiologist fee and the nerve monitoring guy. Dr. Nakaji’s actual fee for me was about $3400.
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