Need advice on how to get a referral to see Dr. Nakaji in Arizona

My adult daughter, diagnosed with Vascular Eagles, sent her medical records from her hospital stay to Dr. Nakaji and his office made an appointment for her to see him later this month. He wants her to have another CTV prior to her visit. They told her that she needs a referral. So my daughter contacted the doctor who had seen her in the hospital as well as seeing her outpatient for a referral. They are ignoring her and have not sent her a referral. So my daughter contacted her primary doctor, who, since the hospital visit, had refilled her Eliquis originally prescribed when my daughter was in the hospital for a jugular clot caused by Eagles. The primary refused to do a referral because they say that they are not ā€œ treatingā€ Eagles. Dr. Nakaji’s office said that they can’t suggest a doctor for a referral. We are out of doctors to go to. Starting over with a new doctor takes months to get an appointment in the Scottsdale, Glendale, Phoenix area. We need a referral asap. Any suggestions will be appreciated.

@WorriedMom I’m going to suggest going back to the primary doctor and ask for a referral using whatever is the diagnosis they are prescribing Eliquis for. Dr. Nakaji will give his own diagnosis based on the imaging and the symptoms. I wasn’t diagnosed with ā€˜Eagles’ before I saw him but for the variety of symptoms I had. And even then, the official diagnosis wasn’t ā€˜Eagles’ because that’s not a diagnosis that has a code, I think it ended up being idiopathic intracranial hypertension and some other things.

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Hi there- I’m an ES patient in the AZ valley as well. If you go to Dr. Adam Kravietz at AoC Arizona Otolaryngology Consultants, he is familiar with ES and can diagnose it and provide appropriate referrals. He was who finally figured out what was wrong with me, got me into Mayo Clinic for the surgery, and very likely saved my life. Don’t go to any other doctor there, as they don’t all know ES. But he does and can help.

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Thank you!

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Can you get into Dr. Mehta without a referral?

I deeply sympathize with you! It can be so difficult to get to where you need to be. After a bit you get plain weary of creative thinking, ā€œhow else can I push this through ā€œ. I think we may have been in a similar situation but we had sent a CTA to Dr Jeffery Middleton in Florida. It was not hard to get an appointment and not a long wait. He kindly had a video consultation with us as our daughter is too ill to travel hundreds of miles unless absolutely necessary. He was the first to pick up on her severe bi lateral jugular compression. He kindly sent a referral to Dr Hepworth for us, as well as the CTA. WOW! What a dr! Highly recommend! I am highly suspicious our PCP may not have agreed to help us along. She is sometimes very willing to help out, and we’ve been blessed over and over by her cooperation. But the more strange and rare diagnosis pop into the picture, the more wary she becomes. I can understand her hesitance but…at the same time, I’d like her to feel our helplessness and desperation in the face of these debilitating syndromes! I hope you get what you need to move forward!

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Thank you for your kindness. I think that we are making some progress.

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