Procedure Denied by My Insurance

Hi All, My pipeline stent procedure was scheduled for tomorrow. After all the pre-op testing and calling my Neurosurgeon's office daily for weeks, my insurance company denied the authorization of my procedure today. I have an unruptured 1.1 cm right carotid aneurysm near my optic nerve which was discovered incidentally when I tripped and hit my head, and fell (and fractured both my wrists) some months back. It's been a long journey through healing my wrists first, having surgery on one of them and through two excellent Neurosurgeon's consults, who recommended two different treatments. I also had a consult with a neurologist. I was in the process of deciding between clipping and craniotomy or pipeline embolization and was going to go through the angiogram before making a final decision, when the Neurosurgeon cancelled my angiogram and advised that they wouldn't accept my insurance plan (after they'd confirmed they would when I was purchasing it). It was very stressful and upsetting, as I'd done a lot of homework and had tried to make certain that both Drs would take the plan I purchased, so that that wouldn't be a consideration for me. I went back to my original Neurosurgeon who I also really liked and trusted, and he presented my case in a neurovascular conference, where the consensus was that I was a perfect candidate for pipeline. He had recommended pipeline from the start. After a lot of thought, reading and soul searching, and having my concerns addressed, I made the final decision to proceed with him and this procedure.

First it took 8 days for the insurance company to authorize the prescription that had been called in for plavix, so my treatment was delayed and procedure had to be re-scheduled right out of the gate. I purchased Empire Blue Cross Blue Shield, it's an HMO plan and I purchased it directly from them, not through the marketplace. When I was injured my position was terminated, and although Workman's Compensation took care of everything to do with my wrists, they finalized my case on January 31st and had made it clear to me from the start that because by all accounts my aneurysm pre-existed the injury, they wouldn't be able to cover anything to do with it. So as I dealt with the recovery of my wrists I dealt with getting myself insured as an individual. I have had what occurs to me like no end of delays and obstacles in dealing with this insurance plan ever since. It is expensive and more than I can afford, which only adds to the overall anxiety of the situation.

I called the Dr's office immediately when I finally got the prescription, as it was marked "no refills- Dr Auth required'. Basically I was told not to worry. As the days passed, I kept getting the same answer from my Dr's office about the authorization for the procedure- every version of "don't worry, don't stress, have patience, the insurance companies take time". Yesterday, at 48 hours out, I got impatient enough to say that I wanted an answer by day's end or a call from the Dr. Instead I got a call fI srom a nurse practitioner, apologizing but again pointing the finger at the insurance company, and another call this morning from an office manager, explaining yet again how the insurance company was dragging their feet but that I shouldn't worry. This afternoon the surgical co-ordinator calls to tell me that the insurance company is denying authorization, and that the Dr is getting involved, but in the meantime would I call the nurse at the insurance company and advocate on my own behalf as well? Of course I did, but the letter read to me by that nurse was ridiculous. It was explained to me that it was based on their policy that the procedure is considered "investigational". It also mentioned coil and stent procedure, which every specialist I have seen has recommended against, due to the fact that I have a wide necked aneurysm. I was surprised at how easy it was for me to speak to the other inaccuracies in the denial letter, but was left basically being told that I should let my family know it was unlikely that the procedure would happen tomorrow. Their Dr would call my Dr back for the peer consult call however she couldn't promise it would happen today. I literally begged this woman to do everything in her power to see to it that their Dr called my Dr back today as it was clear to me that this denial was not based on the facts as I understood them.

She would not give me their Dr's number and assured me that he had my Dr's cell and she would express all my concerns and let him know the urgency. Ultimately my own Dr called to let me know that he hadn't received the call and that they had left for the day at the insurance company side. He was definitely angry and still reassuring me that he would get this authorized asap.

I guess I'm wanting to know if anyone else has gone through this. While I'm not looking to point fingers and get into a he said she said situation, I do feel that my Dr's staff surgical co-ordinator didn't start early enough to push for the authorization so of course I can't help but be upset that I'm dealing with this the night before...however I'm far more upset with the insurance company. Investigational?? I am also left with the additional concern that once the procedure is authorized, I may continue to go through hell with each follow up angiogram and so on....

Any comments, info, experiences to share and or support would be greatly appreciated. Big thanks, Grace

So sorry to read about this nightmare that’s been thrown at you at a time when your sanity is about ready to turn into insanity!
Fortunate for me, I had excellent health coverage at the time my annies were discovered. This coming June, I will be three years post PED surgery. I was one of the first ones in the Philadelphia area to receive the PED just after FDA approval for use in 2011. If any insurance company had a reason to waiver on coverage it was mine! However, lucky for me no problems and a smooth surgery.
I believe someone told you, be your own advocate! No one can fight for your rights better than yourself! I totally agree with that!
I wish I had better info for you, but hopefully someone will respond who can point you in the right direction.
Best wishes and good luck! Hopefully you can get the surgery completed without a hitch!

Thanks so much for your reply, Linda!

I was sure that Empire BC/BS would be a good plan...Lord knows that I have been doing advocate as my main vocation since my injuries happened back on Labor Day. So very disappointing today...still waiting after calling several times; no one will be accountable to make any real time commitment as to when their medical director at the insurance company will actually call my Neurosurgeon back for the requested peer consult. Trying to just breathe and let go now; this week has been about as stressful as any I've had, and I really need to keep my sanity intact as you so rightly point sense of humor too....never thought I'd be on standby for a brain aneurysm! At any rate, so glad to hear that you're doing well and appreciate you as a trailblazer for all of us! All the best, Grace

Hi Again Linda, Would you mind telling me what insurance company you're covered by? The denial was upheld yesterday in the "peer consult" conversation between my insurance company's medical director and my Neurosurgeon. He's furious and fighting it, and has started an appeal process, but just for my knowledge it could be helpful to know. I haven't received any other responses so regrettably I don't know if this is something others have gone through. I'm stunned but not defeated, All the best, Grace

Grace my insurance company was Keystone health plan east which is a Blue Cross Blue Shield HMO for the Pennsylvania area. I have had this insurance for forever, through my husband’s work.
What is their actual denial being based on? And is there a local insurance commission in your area that you can bring into this fight? I know in Pennsylvania, where I was living at the time my aneurysms were found, we had an insurance commission in Philadelphia that would have been brought in to the fight. This may be a good route for you to explore next.
Also to get more responses, you might want to post a small directive to this page on the wall of our group (the first page you see when you come into the group) which is where more people tend to look first rather than inside these specific pages.
Thank God you have a doctor willing to go all the way with you through this. I’m sure there’s a lot of doctors out there that wouldn’t want to be bothered with the headache of trying to get through the administrative BS.
Also, you may want to try posting on the forum page of the site with a brief description of what is going on. There may be others that have gone through similar insurance issues, but just weren’t PED recipients.
Don’t give up girl, hopefully you will continue to find ways to get you what you need!
I’m here to lean on!
Best wishes,

Thanks again, Linda. Unbelievable...trying to take hope in the fact that my plan is also a Blue Cross / Blue Shield HMO...of course I know that these things may vary from state to state (I'm in NY). The denial is two-fold as I understood it, first that they're calling the procedure "investigational"; which as you well know is ridiculous, and 2nd that they're saying a coil and stent procedure is indicated (which is exactly the opposite of what I've been told by all of the top notch Neuros I've seen, as I have a wide necked aneurysm). I'm reluctant to call the insurance company back until I've spoken again directly with my Dr, as I want to make certain that I'm in alignment with him on all the talking points and am fully armed to support whatever arguments he's already making.

Believe me I am not giving up, I've only just begun to fight! And I also know I need to keep myself as calm as I can; all the righteous indignation, anger and upset are not going to help me in this battle but they sure keep coming up. I have started looking on line about the appeals process and yes, also looking into what kind of other help I can getm such as the kind of commision you seems that you need to exhaust internal appeal processes first before you can do an external process at the preauthorization stage. Also pouring over the section on this in my benefits book which is frankly minimally helpful. Regarding posting a small directive, would I do this via the "send message to group" link? I haven't posted on the forum page yet but I'll of course look to try that too. I definitely need and welcome all the help I can get. My friends and family are all so upset for me that it's tough to shake off the context of "this shouldn't be this way and I shouldn't have to go through all this"...I'm trying so hard to keep all the emotional charge at bay so I can stay focused, positive and empowered and not indulge in how screwed over I actually feel. Thanks so much for the support, I'm beyond grateful to have you and the other wonderful people on this site to lean on.

All the best, XOback atcha, Grace

Grace, you certainly can send a message to the group using the link that you indicated. However, what I was referring to is here: <<— which is the link to the wall page of the PED group. It’s a much more viewed page which is seen more often by the group members.
Also here’s a link to articles regarding the PED and it’s use:
You may want to pay special attention to the articles on the PUFS and PITA clinical studies which relate to wide neck and uncoilable ICA (internal carotid artery) annies, which up until the PED were inoperable.
Maybe you should also try googling coiling and stent versus flow diverters. Flow diverters do exactly that, divert flow away firm the annie “bulge” whereas coiling fills the annie bulge with coils and then a stent is put in to hold the coils and stop them from falling out! Why fill a bulge with more material, rather than divert material away? Seems like a no brainier to me!
Inundate your insurance company with as much info as you can learn about the PED and you can throw at them! Get the FDA articles and give them to them…get the government studies since FDA approval and throw them at them also! PED has been FDA approved since April, 2011! For them to throw investigational at you is total BS! You need to make them know you know different and that you will no give up so easily!
Anything else I can help with let me know!

God help you, I feel everything you feel, all over again. I was there - I have Group Health in WA state through my husband's employer (state college). They put up roadblocks at every turn for me, and it took two months from diagnosis to treatment (and I was the one who found the right doctor and the right treatment plan, not my primary doc, and I rightly declined the coil/stent procedure from another doc that could've killed me). Maybe two days before I was getting on a plane to AZ for surgery, the insurance denied my going there to see the doc, much less the procedure, despite the fact that the PED was the only chance for a meaningful life afterwards and wasn't yet available in my entire state! I went ahead with the surgery, and fought them later, and lost all of the internal and external appeals. I had all sorts of evidence, doctors letters, etc. and they just would not listen. They said it was out of network, and that I could've had another procedure in state (bypass was the only other option, but far riskier), and then that the PED wasn't standard care for aneurysms. It was a farce. It cost me dearly in the pocketbook to have zero coverage, and I am currently suing them (my denied coverage surgery took place March 1, 2012 - I filed suit that summer and as you can see suing takes time...). They ended up covering a second PED surgery in-state once it was available because I had a small leak that needed more PED's telescoped in to fix (not a common occurrence). I was baffled at that! They did cover all my angiograms, but since I see a neurosurgeon (on the other side of my state - the AZ neuro I've never been able to return to, but it's been fine this way) that is technically not in-network, there's always a process of dealing with referrals from my primary doc. I understand completely what you are dealing with emotionally - two months of being jostled around and getting little to no support from my insurance and basically directing all my own care and phone call circus, all while knowing in the back of my head (literally) was there was a 2.3cm wide necked annie in my basilar/vertebral artery area. Primary doc says "keep calm" and this menagerie goes on around me - yeah right! By God's good graces I survived, had the surgery, and am doing very well. Somehow we have figured out the money, we aren't destitute, and I know the lawyer will come through and it'll all be rectified in my favor. I can't see how it won't. Matter of fact I have faith it'll all be okay. If I can help you at all, please don't hesitate to ask. I'd be happy just to hear you rant and rave if that's what you need - I was there, and I didn't air it out on here, but I know if I had there'd be someone with a shoulder available. Keep us posted on your progress, please!

Awe Grace, This is unbelievable. There has to be a way. Politicians? I don't know. I work for New York State and have Empire; however it sounds like the issue is that you didn't have Empire when you were diagnosed? I hope someone can come up with an idea that will help you get the pipeline. I came to Mayo Clinic in is that your doc won't take the insurance or that the insurance outright refuses to pay? You are in my thoughts and prayers. Christine

I am sorry for the stress you must be feeling. I wouldnt know where to start?? could it be the doctor is not advocating for you? Perhaps call Mayo, or Hopkins and ask what they would do. I know it sounds odd, but they were the hospitals (I think) that first started the procedure in the US. I was #75 at Hopkins.They must have had to convince the insurance companies..?

I’m so sorry for all of the red tape you’ve had to go through! It’s ridiculous! The insurance companies are crooks. Keep pushing and calling!

Ah Linda, you are the best. Yes, I already told the insurance company most of what you advised here: the fda approval, the fact that my aneurysm is indeed wide neck AND ICA, why the coil and stent makes no sense for me. When I spoke to my Neurosurgeon after they upheld the denial after the "peer consult" call, he told me that in fact I'm more educated than the Dr. he had to deal with. He started an expedited appeal...and also told me that this was the first time he's had this issue with the pipeline procedure. Other things declined, but not this. I got quite anxious all over again as I was hoping to get some sense of the process only to discover there was no precedence in his experience. In the meantime I started to investigate all I could find in my benefits book and on the internet about appeals. I'm so very relieved to report that I got the call from his office this afternoon that they received an approval from the office of appeals at BC/BS. WHEW!!! I am re-scheduled for the day after tomorrow. Who would've guessed I'd be relieved and excited and celebrating going into this? Certainly not me, yet I am. Thanks a million again!! Hugs, Grace

Oh Sarah, what a nightmare you went through, and I am really sorry that my own triggered all those memories. I'm relieved tonight that thankfully and hopefully the worst part of it is over for me; I now have the approval as of this afternoon, and my procedure has been re-scheduled for Thursday, the day after tomorrow. I'm so grateful for your sharing your ordeal just the same, as I've been working hard to stay present to the fact that none of this is personal to's a crazy system and a fiasco. I'm so glad to hear that you're doing very well!!! In spite of the on-going struggle with the lawsuit and the on going hassle of referrals just to get your care. Of course at the end of the day, that's the most important and precious thing, that you're doing very well! I'm sure I'll be dealing with other battles down the road, but wow, am I ever relieved that this big one is over. I'm very grateful for your really makes such a difference to know that you have the support and understanding of people who've been there. I look forward to updating you all and to my recovery! Ciao for now, Grace

Thanks so much, Christine! Thank Heavens the appeal worked, and my Neurosurgeon's office got the pre-authorization this afternoon. They've re-scheduled me for the day after tomorrow. I'm so relieved...I've been too stressed to give in to my fears...I know that they'll be creeping up on me tomorrow but right now I'm actually so grateful to have some certainty that I'm all smiles. Thanks so much for your reply and support, it means so much! Keep me in your prayers, and I'll look forward to updating everyone with my progress. Ciao for now, all the best, Grace

Thanks, Denise, I really appreciate it and no, didn't sound odd at all. Thankfully the appeal worked and the pre-authorization came through for me this afternoon; I'm going in day after tomorrow. My Neurosurgeon totally advocated for me, bless his heart...I'm at New York Presbyterian Weill Cornell and my Dr has a lot of experience with the the pipeline. #75?? Wow!! Thanks for the courage to pave the way, and I hope that you're doing great now! Ciao for now, Grace

Grace! I’m so happppppppyyyyyyy for you girl! I’ve not been online today because I had surgery on my right hand (carpal tunnel) this morning and have been in and out of sleep all day. When I saw your post, it made my bad day so bright! I’m thrilled!

Now, try to relax, although I know that will be hard. Hopefully tomorrow will fly by and you PED will be done before you know it!

You are now going to be flooded with more emotions than you can shake a stick at. Try to remain as calm as possible. Now is the time to surround yourself with your family that is going to help you make it through this and the rest of your journey. That Journey will include your family here at BAF as well. As you can see, a couple of the girls have responded to your post above. I never would have made it through my journey without my family from BAF. We will all be praying and pulling for you and spiritually be right there in that OR with you!

Thank God for Siri or I would not be able to have this response to you! Siri is totally my right hand right now ha ha ha. (In case you don’t know who Siri is, she is voice assistant for iPads and iPhones.)

Hugs back at you and I cannot wait to hear how smooth sailing your surgery goes. In the meantime, I’m here for ya!

Thanks, Kelly! I'm relieved that the appeal worked and my pre-authorization came through late this afternoon; the Neurosurgeon re-scheduled me for day after tomorrow. Whew! So very grateful for your support and will keep you posted. Ciao for now, Grace

Thanks, Linda! Yes, I realize that all the fear is going to start creeping back...I am going to lean on everyone for sure, including my new BAF fam here. And thank you, it really means something to know that you're all here and pulling for me. And by the way, I had carpal tunnel release surgery last month, on January 6th. My recovery was a breeze and the result was near miraculous, so I wish you the same! And mine was after serious fracture had healed so my symptoms were pretty severe. I'm praying I come through this one near as well! I know Siri...I had both wrists badly fractured at the same time, so I even got to know voice command technology.;-) Heal fast and well, big hugs back to you! xooxGrace

I’m so happy you’ve gotten approval! Don’t be sorry your post reminded me of my own ordeal - this site is for support through all the steps of care and I’m happy to help. And like you said I’m doing well and that’s all that matters. :slight_smile: I can’t wait to hear how your surgery goes and hope you continue to find support here!

Grace, I have been thinking about you; please let us know how you made out with your procedure. Sending warm thoughts. Christine