I know insurance limitations that make this entire process even more difficult. I was fortunate to receive care with Dr. Osborne on the 25th and 30th. Though he was considered out of network there are “Waivers” that can be requested. Through my husbands diligent efforts, we were surprisingly approved. BCBS will now pay for the surgery with in network benefits ( there may still be out of pocket costs) because of 1) the rarity of this conditions 2) having no other specialist within 150 miles, 3) having no other specialist who can treat you within reasonable time frame. Every insurance is different but I hope this can help. Attached is a copy of the letters and documentations sent.
BCBS Waiver.pdf (3.5 MB)
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Thank you for sharing this information!
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Thank you! Well done to your husband pushing for your surgery funding!
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Is this in Canada?
No, in the U.S. but you might be able to use the same idea in Canada to make an appeal when you can’t get care for a rare disease or syndrome. BCBS stands for Blue Cross/Blue Shield which are two prominent medical insurance companies in the US that seem to have recently merged or are now working together.
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Oh wow! I have BCBS and they arent wanting to cover Dr Hepworth in Denver because it’s out of network . Thank you so much for sharing this🙏
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Would you suggest to download this waiver and put my own info and Dr info? Then send to BCBS?
Or would I request a waiver from my BCBS case manager? Sorry for all the messages. I’m on a tight time crunch. Surgery date for right styloidectomy and jugular decompression is August 18th 
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My husband called the customer service number and was transferred to prior auth. On the phone he initiated the waiver. We would advised this because its recorded and they have 5 days to make a decision so it starts the process. They will collect the needed info like the NPI numbers and fax numbers to dr and surgical facility along with diagnosis and procedure codes. They will also need the dates of the surgery and how many follow ups will be needed. Once the requests are completed you will get a case number, 1 for the doctor and the other for the facility. They will fax along the conformation number and made us submit our write up. The write up was shown, we also included imagining and a basic letter from from the doctor that they should have. ( show your doctor the copy of Osborne if they don’t have one). Make sure to make a note in your write up how “rare” the condition is. Recall the 5 day turn around, day 2/3 call again. “Just calling to make sure you got it”, stress the dates of surgery and ask if it can be " expedited" The more you follow up, the more notes, the more sense of urgency. This documentation will be reviewed by a nurse practitioner. FIGHT FIGHT FIGHT! Insurance works for us, shame its gotten to this point.
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I just burst into tears. These are very detailed step by step instructions. I have already started the write up thanks to you. and chatgpt of course. It helped me put it into my own words and all of my tests and what not. I truly appreciate you posting this, it will definitely help people, it already has. 
I will call them tomorrow. I have already been sending letters from doctors that arent qualified that the insurance wanted me to send referrals too so this will help so much on top of those letters. How are you feeling after your bilateral surgery?
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I have been so touched by everyone in this forum who has shared their story, I was inspired to give back anyway I could. This forum is nothing but survivors and and hero’s including yourself! I am a medical professional specialized in Optometry, with my own practice. I am currently focusing on passing along my story and information to better help theses providers understand this condition. The only way we can save people is by spreading awareness and educating.
I am 1 week post op left side, and 2 weeks post op right side. I feel so driven and energetic! I started my documentation to my providers the same day! The symptoms flared the day of op. but by the next day vanished. My heart rate has drastically stabilized since the “head bra” removal", I am quick to loose weight and lost a good 7 pounds so its taken some time for my stomach to re-adapt to food but its ready. Aside from mild jaw pain from bruising I can feel my body re-normalizing. Tinnitus also flared post op, its since gotten quieter, fingers crossed she disappears!
Please keep me posted on your insurance and your surgery. Keeping you in my prayers.
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Thank you Jules, I will keep everyone posted.
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What a rough road for everyone here right!? Wow, i truly feel for everyone here and would also like to give back in any way I can. The people on here are wonderful to take time out of there day to help people, even if they are feeling better. I will keep everyone posted. I’m praying this works. I’m so happy to hear you’re feeling so driven and energetic and your heart rate has stablized. I will send healing vibes your way for a quick recovery. 
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Ugh… BCBS of Utah said there is no Prior Auth, that the doctor needs to send in letters deeming it medically necessary then they transferred me to the case manager that hasn’t really been able to help me. I’ll contact Hepworths office and see if they have done this before. I’ll Keep everyone posted
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That’s not true, they told us the same thing. Keep calling, don’t give up! Half the battle is finding the right person that actually knows what they are talking about. Document time and date and the name of everyone you speak to. Be prepared to be transferred 100 times. Use there letter from Dr. Osborne and take it directly to Hepworths office and this is all I need. I’m sorry, nothing seems to come easy these days. One lady declined it on our and saying it wasn’t a thing, our response was really because I’m on your website looking at it now… 
then alll of a sudden she understood…
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Oh dang. Ok thank you! I’ll call again. Is it my wording maybe? Ugh.. so frustrating
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Does anyone know how I can make my United Healthcare Bronze focus copay work? Says no referral needed on card. Or can anyone point me to a doctor with knowledge within st louis or surrounding states.
@Leonel1195 - You’ll need to call your insurance company to ask how it works. There are medical insurances, especially PPOs, that don’t require referrals, however, some doctors do require them even if insurance doesn’t.
Unfortunately we don’t currently have any doctors on our list for MO. The couple we had quit doing ES surgeries. You can try calling some local ENTs, maxillofacial or head & neck surgeons to see if any of them know about ES & if someone does, you can make an appt to be seen. We have experienced doctors on our list in surrounding states if you can travel.
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I don’t know if this helps, we’re not aware of any members who’ve seen this doctor:
Joshua W. Osbun, MD - WashU Medicine Physicians
But @njess has posted a discussion here:
Update, finally seen at WashU - General / Eagle Syndrome Stories - Living with Eagle
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