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Eagle Syndrome - Online Support Group

At what point do you stop trying with a specific doctor?

Thanks again, @Isaiah_40_31. You’re absolutely right, I should call the folks who did the CT and have them get me another copy- so much simpler than trying to burn my own CD in 2020! I certainly don’t mind them requiring them, it’s just the efficiency of the thing that bothers me. You all know how it feels when you’ve been waiting and waiting and waiting for help and then the people who have the power to help you are dragging their feet.

Currently just waiting for Dr. Hepworth’s scheduling people to call me back- I never have the ringer on on my phone but it’s on today!

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Time to move on. Dont give this doc the time of day.

The radiology group that did the scan should have a “release of Records” form you will need to sign to have the CT disk sent to doctor. They normally do not charge to sent to docs. I would look on their website to find the patient form. Sign and fax in. I usually call the records dept and speak to someone and if they are nice, will promptly send out the scans. I also confirm they have received the signed document. They will not send without this.
I have learned unfortunately thru decades of MRI’s and scans, that rarely are docs office’s on top of telling you to have this done before a consultation. If the scans are done outside their “medical affiliation”, they dont often have digital access to the radiology scans. Good luck with future scheduling and getting the right doc to review.

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Thanks, Snapple! Turns out I’m going to have to drive across town to pick up a disc and take it to his office, which I’m going to do because I’m anticipating that I might need his “there’s nothing wrong with you I can’t help you” to convince my insurance that I need to switch plans. SO frustrating!

Curious if anyone here has info on this: I have an appointment with Dr. Hepworth for 8/25, but his scheduling person said that they might not be able to see me at all (even if I pay out of pocket) with the type of insurance I have. Has anyone heard of this happening before?

If you have medicaid or medicare, they may refuse to see you. Many dont want to deal with those plans or only limit the number of patients who are on it due to low reimbursement rates. I had a PCP schedule me and my daughter and I have good PPO insurance and they were network providers. My daughter also has medicaid (she is on SSI) as secondary. They then refused to see her as they dont take “Medicaid” patients. I had to fight with them our primary pays and I would pay the copay but they refused. I was furious. It may not be that but that but I dont think they can do that legally if you are paying out of pocket. It may be an “Office Practice or protocol” which is BS in my book.

What she told me (I am on Medicaid, but since I live in the Denver area they automatically enrolled me in a “managed care plan” that I cannot seem to escape from. Hepworth takes Colorado medicaid, but can’t take my specific plan) is that the managed care plan folks get upset with them if they see Denver Health patients, even if they pay out of pocket. I don’t understand this AT ALL and am hoping she’s wrong about it, but I guess I shouldn’t cross my fingers.

Best thing is to retract what you told them. Say you have no insurance anymore. YOu just want to pay out of pocket.
This all comes down to $$$. They cannot legally balance bill or charge for co-pays or co-insurance to medicaid patients so they either dont take it or limit the number of patients in their practice.
My son lives in Denver and also on medicaid however he is with Kaiser somehow but he too has problems seeing specialists. Are you in a HMO type plan? Where you have to get referrals from PCP?

You should be able to go outside to a specialist with a PCP referral. Depending on your doc, you may have to fight with them or request a new PCP.

My son also in Denver proper. I know he has had problems seeing specialist docs and very frustrated. Seems to get stuck in loop of going to managed care physicians in network that don’t have the expertise he needs for what is going on with him. He doesnt have the patience to fight with the system and has given up. It sounds like Colorado has a difficult medicaid system and you have to get tenacious and demanding. You have to figure out how the system works and work it to your needs. Sometimes have to jump thru stupid hoops to get there. It can be time consuming. The problems he has told me about just blow my mind. A close friend of mine has a good saying…“The system must be satisfied”. Patience and perseverance. I hope they let you in to see him. Good luck.

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@kittchenita

I wonder if Medicaid would even have to know you had an appt w/ Dr. Hepworth if you’re paying out-of-pocket? It seems silly that they would receive notification of an appointment they weren’t being asked to cover. Maybe it’s the law though that Medicaid has to be notified any time you have an appt.

Yeah, I’m going to do some research to see if anyone would even find out if I just pretended like I didn’t have insurance at all. His office was supposed to talk to billing and then call me back (they haven’t) but I’ll call them back today. I know I’ve heard other folks talk about Hepworth being amazing but having issues with scheduling/getting in touch with the office. If it seems like I’m going to need to be honest about my insurance, I’ll call them later and explain the situation and see what needs to be done.

Making so many phone calls when your voice is bad/painful sucks so bad. Not like I already had terrible social anxiety that made talking on the phone awful.

@Snapple2020, I’m so sorry to hear your son is also stuck in the medicaid system! I really think it is incredible for people who don’t have chronic health issues (or have more mainstream ones). It’s just us outliers that it sucks for! I’ll try to report back here as I find out more about “satisfying the system” so that maybe it can help him as well.

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It is a rule (via contract) that you cannot balance bill (co-pay or coinsurance) medicaid or medicare clients for services if you already accept them in your practice. If they only accept a small % of those patients (many limit how many patients they will take), even accepting them out of pocket in full (all cash) from a known medicaid insured patient can potentially have a liability risk and get them in trouble with the feds. some are willing to do it but those are usually smaller practices. That’s why it is best to tell them you have no insurance. What they don’t know wont hurt them. They can claim ignorance.

Unfortunately these are the hooks within the medicaid system that I think are designed to prevent or limit advanced care for those unable to get better health insurance. You can usually get around these hooks when you understand how the system works and where the loopholes are. Knowing what the rules and procedures are to jump to higher level or more specialty care in a managed care environment. I usually get the “Summary of Plan” document which is easy for most to read. Then I get the full “Plan Benefit” booklet which is not a light read and not always easy to obtain. You may have been mailed this when you were first approved for medicaid or any plan. (About 50-80 pages) If you refer to Table of Contents, you can usually go to area that applies. Sometimes these are posted on the plans website or you have to call in and request it be sent to you. The Plan Benefit booklet is your roadmap (or hoops) to get your care. Hidden in the fine print are the exclusions to care. I study it in depth so I know my rights to care and the process to follow to get it. The language in these booklets are sometimes legaleeze or double speak and confusing. Its designed to be that way as most people don’t know how to navigate the system. Many medical staff don’t know either so dont count on them to help…they are clueless too… much of the time. Too many plans and too many moving parts and rules. It has taken me years to learn how to decipher this language. Hang in there and have perseverence.

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Well, I just talked to the billing person at his office and she said that I can just tell them I’m self-pay, so that’s awesome! It’s actually only going to be like $200 which is much, much less than I thought, so I’m pretty excited about that! Now, just to wait for 8/25 to come around…

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Woo hoo. That is great :star_struck:

well, the next hurdle is if you need or want surgery…with this doc, is to get past the hurdles with insurance covering this doc to do your surgery. You wont be able to self-pay for that one…LOL

If you can prove no one else experienced in Denver area on your plan, you can appeal to get Hepworth. Usually you can go out of the managed care system with a PCP referral. Having the consult report from Hepworth will help. let me know if you need some help on that. Get the plan documents i suggested and I can research it for you.

I really appreciate this! That’s why I still brought my CT to the other doc- I suspect that if he says there’s nothing he can do/he doesn’t want to do surgery and Hepworth DOES, I can opt out of the managed care plan on the argument that there’s no one in the managed care plan that does what I need done. I would be totally fine being on regular Colorado medicaid, I think everything else I need medically would go from being free to being like $2-3 a visit or something which is totally fine with me, it’s just a matter of convincing them that I need to switch plans.

Also, my PCP doesn’t know a lot about ES so she hasn’t been a huge help, but I’m pretty sure she’d write me an out-of-network referral if I asked and she could.

I’ll poke around for those plan documents and see what I can find out! Thanks again!

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Hi @kittchenita I’m so sorry you’re going through hassles with insurance and this other doctor that is wasting your time. I am also in Denver and also on an ACA plan; it has been a real hassle trying to deal with this extremely painful issue and navigate my crappy insurance. I’m trying to get on my partner’s plan now to make things easier.

I am seeing Dr. Hepworth for very similar issues and I can assure you he is extremely caring and gifted at what he does. I am not sure I’ve ever seen a specialist with such a great bedside manner. He has told me repeatedly “I believe you,” that there is a scientific reason for my problems, it’s not “in my head” or “panic attacks” as I was previously diagnosed. He is very thorough. I still do not have a firm diagnosis as he is checking all of the peripheral things, but he has brought up Eagle syndrome as a possibility. He also has sent me to other doctors for various tests, mainly a CT scan, a vascular ultrasound, examination of my eyes for papilledema (optic nerve swelling). Last time I saw him he referred me for a cerebral angiogram. He said “look me in the eye: this is not a transition of care.” That meant a lot to me that he is not giving up on my case. I am supposed to see him roughly a week or two after this procedure but am still waiting to schedule. His scheduling people are not the greatest (they are gatekeepers, like most scheduling staff) but his nurses and PA are very professional and kind. I am confident he will tell you within the first appointment if this is a potential issue if he can see your CT and he will not waste your time! If you have any questions please reach out and message me. There are a few others here who see him and our journeys have been very very similar. Hang in there!

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Thank you, blossom! I’m pretty desperate for someone who will believe me and advocate for me (which is pretty ridiculous considering my main symptom is my voice… they can hear that I cannot y’all properly). Hopefully I’m nearing some answers here- I had another doctor diagnose me with ES but was wishy washy on whether surgery would help, so hopefully Hepworth will see it and will make quick moves to fix it. It makes me feel good to know though that he’ll make an effort to think even outside MY box. I know a lot of you are likely in the same boat, but I honestly don’t care if it’s ES as long as I can find a doctor who has an idea of what it could be and is interested in treating me.

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