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Posted 8/6/2013 2:04 AM (GMT 0)
I am new to the forum. My story is very similar to many others. I just had my fifth spinal surgery. This last one was an L4-S1 fusion. The surgeon used allografts, autografts and bone morphogenic protein. BMP is only FDA approved for a limited procedures. Mine was used in an "off label" way. Needless to say, my insurance has denied my entire surgery and any ancillary or follow up care having to do with my fusion. Just received a bill for $310,000.00 (so far) Has anyone had BMP used in their surgery? If yes, what was your outcome? Has anyone dealt with insurance and BMP? Needless to say, I am overwhelmed, hopeless and angry. I signed up for this site to be able to hopefully discuss issues with others who understand how helpless chronic illness and pain can make a person feel. Would appreciate any insight on how to keep going. I am feeling pretty much like I am at the edge of a cliff, hanging by one finger. I don't know if I can muster the strength to pull myself up anymore. It would be easier to let go. I am 46 and feel like a financial and emotional drain on my family because I can barely take care of myself, physically. And now this HUGE surgery bill threatens what little I do have left. Is there a point to all of this? Where does it end and is it really worth it? I am open to any advice on coping strategies. Feel like I have tried them all, though.
Posted 8/6/2013 2:26 AM (GMT 0)
Pandora,

First of all let me say I am so sorry. I am about to have a spinal fusion at the same area and hopefully I don't get a tab and if I do not that large. Let me ask you some questions about this. Did you doctor inform you that this is an 'off-label' method and that your insurance might not cover it? Did you contact your insurance prior to surgery and verify the amount you would pay before hand? What did the paperwork say that doctors have you sign before surgery?

I am in the same boat as you with when does it end and is it worth the wait. I am 24 years old and fought for a year to get my back pain acknowledged and after it all I have a malpractice suit in the works because of what the Army PA did. [didn't do any imaging before sending me straight to a chiropractor and a physical therapist causing a herniated disc to turn into modic type 2 at my l5-s1 and herniated, bulging, annular tearing, and dessication at my l4-l5] You can see my pain management issues in my other thread [don't want to thread jack you]

I know that it is difficult to see but life is worth living. We will get through this and eventually things will be looking up again. I would talk to your doctor when you go in next as a follow up to surgery about what you need to be doing on your own to heal up properly. We are here for you and if you ever need to talk to a live person go a head and email me I will be there to listen. I know this is frustrating and heartbreaking.

Lots of love and best wishes sent your way [LONG DISTANCE HUG <(^,^)>]
Morgan
Posted 8/6/2013 2:43 AM (GMT 0)
Thank you for your kind words. I hope your surgery goes well. Yes, I did get prior auth for surgery. I had never heard of BMP prior to this. The first I heard of it,was when I received an insurance denial based on an experimental procedure being used. My surgeon stated that he used it as a last resort based on the fact that I did not have enough bone left in that area of my spine. I have hired an attorney to appeal. However,that costs money too. I try to be appreciative of everything that I do have; however, I am just going through the motions of existence. I am at a loss on how to keep a positive mental attitude. I always always tell myself that things could be worse. But I am at that breaking point of desperation. To embarrassed to let my family know how bad I feel. I have always trudged forward and fought through. I need help, but that requires more money. It seems as if it is a vicious cycle that has no beginning and no end in sight. How does one get the help they need without having the resources to do so?
Posted 8/6/2013 3:02 AM (GMT 0)
Pandora,

You can add the cost of a lawyer to the appeal. You would only have to pay the initial retainer fee. Because the BMP was a last resort from lacking bone. Your insurance can not deny payment because of a last resort medical usage. [I would definitely go through your medical insurance coverage and see what their policies are on last resort experimental procedures {goggle it if you have to}]
In my opinion because you were unaware of BMP, that the doctor did not get prior authorization to use the BMP and used it as a last resort you are not liable. Call the doctor and see if there were any other options for lacking bone material he could have used effectively other than BMP. If there was then why didn't he use it? If he used it to see what what would happen and turned you into a guinea pig with out your consent then you might want to speak to a lawyer about that as well. You should not be liable for a last resort procedure you didn't authorize. So good news either the insurance company will be forced to pick up the tab or the doctor will depending on what information is provided to you.

Do you have your medical records from this procedure already in your possession?

What I do every morning is make a list of 10 things I am thankful for. I am working on putting together a good thing jar. Every time a good thing happens no matter how small write it on a piece of paper and stick it in the mason jar [your husband brings you dinner as a surprise, kids pick up their room with out asking, the sun is shining] You have to put one piece of paper in it a day minimum. In a couple months you won't even have to think about what good happened because you'll be in a much more positive mood. Try it and see if it works for you.

Morgan
Posted 8/6/2013 3:22 AM (GMT 0)
I really like your idea. It seems like it is a good place to start. I am very fortunate, despite everything. Why is it easier to reach out to complete strangers, than it is to family? I think I am at a crossroads in my life. I need to admit to myself that I cannot just put on a happy face just for the benefit of others. This is actually the first time I have actually admitted that I am sinking into the depths of depression and it scares me. I think I forgot that one needs to not only heal physically, but emotionally, as well. The physical part is easier for people to understand. They can see the physical scars dissipate with time. The emotional scars linger. People who have health problems find it difficult to understand the sense of loss one goes through.
Posted 8/6/2013 3:38 AM (GMT 0)
Pandora,

The anonymity of strangers through a computer put us at ease more then trying to share whats going on with those who love us. We don't want to burden our family with more issues then what they are already dealing with from us. Plus you are also on a forum where we all understand the pain, frustration, depression, anger, hurt, and quality of life issues which helps sharing more.

I just admitted that very thing last week. I keep hiding how I am feeling, the pain level, and the smiling despite the hollow, painful, hurt self inside. I need to let my doctors, husband, and family see what I am really feeling not the smiling forced cheer I was putting out there. I did it just before a really bad flare up and my husband & mother in law are both going What the Heck is going on with her. I kept snapping at them and really irritable from the pain. My mother in law thought I was pissed at her and I had to explain I was having really bad pain [I sat down on the floor to fix a drawer in my apothecary dresser and I couldn't get back up.] I had to call my husband and he took his time getting to me thinking I was just getting ready to chew him out for something in the bedroom [was mad earlier because after 5 days he still hadn't put the laundry away in the hard wood dresser {I can't manage the drawers without severe pain}] then he saw me laying on the floor and I couldn't get up. He felt really bad. I just hope that my new pain management doctor will be willing to help me manage my pain. Like I said earlier I am new to the chronic pain life.

Morgan
Posted 8/6/2013 8:43 AM (GMT 0)
Pandora, what an awful situation to be left in. I'm in the UK and BMP is used regularly. Certainly in my case I've never had my own bone used. I had to have a bone bract following a broken leg, they used BMP, following my spinal fusion they used BMP and after my SI joint fusions it was BMP my surgeon used. I've never had any issues with it at all and, although I am a slow healer, I did heal.

I find it hard to comprehend your health care system. At least with the NHS everything is free. I have private health insurance too which means I have access to more hospitals and treatment is faster. In Scotland all prescription meds are free too.

Did you have to get authorization prior to the surgery? Will your insurance not accept a letter from your surgeon stating that using BMP was his only option? I know everything seems bleak but I'm sure this can and will be resolved. I know I'm not familiar with your healthcare system but I would hope that common sense would prevail st some point. I'm sure your attorney will fight for you.

Depression after major surgery is common, your body has endured a lot. You are not alone, it happens to most people. And living with chronic pain causes depression too. The main thing is to admit it and seek help. There are treatments as well as meds that do help. It need not be a long term thing, you just need time to get over all that's going on just now.

Try to find something to help you relax, any distraction is good. Just remember you will get through this, it will sort itself out. In the meantime, you can vent here anytime, this is a supportive group who do understand.

Take care Pandora

Jane
Posted 8/6/2013 1:36 PM (GMT 0)
Hi Pandora.

I've not any advice to offer (though it sounds like Morgan and Jane are doing well at filling you in) but I just wanted to welcome you to the forum.

Laura
Posted 8/6/2013 4:14 PM (GMT 0)
Thanks to all of you. Jane, it is interesting that you has BMP too. From what I understand, it is not commonly used here in the States. Mostly, because it is not FDA approved for most applications. Our healthcare system is pretty crazy. I have to pay COBRA insurance ($800 per month). It is the only insurance that I currently have access to and it is not good coverage. It is frustrating that I do not have the financial ability to obtain the help that I need. I feel pretty trapped and hopeless. You reach a point where it seems that you have exhausted all options and there is no where else to go. Even if there was an answer, it would only be a temporary fix. The end does not seem to justify the means.

Pandora
Posted 8/6/2013 4:35 PM (GMT 0)
Our insurance feels that (with doctors) or lives are worth any amount to extend them. So that huge bill they sent you that you will be spending the rest of one's life posting is worth it. I don't think we should be forced to pay such high costs for procedures. It's mostly fluff costs anyway. The cost of soap, iodine, the room fees, ect. Get an itemized list out to see what they are charging you for. I know when I had my heart surgery they charged me for a bunch of random stuff totaling over 200k. Insurance covered it all but it was interesting seeing all the add on charges
Posted 8/7/2013 6:58 PM (GMT 0)
Hi Pandora and welcome to the chronic pain forum. Every person that comes to this forum has a story to tell. The stories are all different except we all suffer with chronic pain of some kind.

That is pretty tough what has happened with the insurance refusing to pay the bill. However, I have had some issues with my private insurance, had some procedures done that is pretty common. Went through the pre-cert/authorization with no problems, when they were billed the insurance it was denied. When I called the insurance company to ask why it was denied when they were given authorization that is when I was told that even though I was given a pre-cert, in the fine print it states that is not a guarantee of payment.

I honestly feel the drs office has some role in this, at least the person that contacts the insurance companies for approval. If this product is not FDA approved for the off label use and is being used off label then I am betting you are not the only one getting a letter of denial. Keep us posted...Susie
Posted 8/8/2013 12:43 AM (GMT 0)
Whoah.

Wow.

Okay, Pandora. This is the first time I've read this thread, even though you and I have written posts back and forth on various other threads. Wow. Just wow.

I had L1 through L5 spinal fusion and decompression in December. I had spondylolisthesis, stenosis, ddd, organic fusing of two vertebrae, and a litany of other goodies going on. At that time I required bone marrow grafts and bone grafts and my surgeon took all of that from my pelvis. My grafting sites sometimes flare up still, it's weird.

Before my surgery, it was the surgeon's office who got the authorizations. I know ultimately we all sign papers acknowledging we are responsible "in the event" our insurance doesn't pay, but they usually leave no room for error with surgeries as big as what we've had. My surgery took over 8-1/2 hours and a team of surgeons to complete,....they want to get paid.

When I got my total hip replacement in June, I signed on for an "experimental medication" that is used in some hospitals regularly, but not the one I went to, and I agreed. The medication was to reduce the amount of blood loss. It is not unusual for me to require four blood transfusions after surgery, so this med, used regularly at Mayo Clinic but usually for severe trauma patients who are bleeding profusely, isn't entirely "untested," but for using "prophylactically" for my surgery was a bit off label as well, and I had to sign three papers acknowledging this participation.

I had all sorts of complications, don't think from that drug, but other stuff, but never got a bill....

I'm dumbfounded hearing about your bill after this surgery, especially given it sounds like your surgeon had no alternative. That's a whole different ball game, meaning this was NOT "elective," and that should be power in your court.

Fight it toots, fight it. Power to you. Be prepared to fight as insurance companies are notoriously tight fisted with endless funds to their legal teams, but getting a good lawyer, preferably one working on a contingency case, (there's plenty of those around, nationally), will be helpful.

Good luck to you.

Sookie

PS: I keep wanting to call you "Pandy" because my good friend who lived in NC used to call me Pandora....that was his nickname for me. (Probably because if I was around, trouble would follow).
Posted 8/8/2013 1:14 AM (GMT 0)
Thanks Sookie. I am strong willed and can be pretty feisty: So I am told. I am fighting it with all I've got. I just had a nice 2 hour meeting with the Illinois State Senator about this. He was flabbergasted. I have hired attorneys and have a super supportive family. I was devastated at first. Cried for days, thought life was over. Thought I would end up homeless because of the bill. Then, after my complete break down, I just got plain mad. Win or lose, it is now a matter of principle. I am so tired of being mowed over by big bad insurance companies. I followed all of their rules with authorizations and such. And now they want to change the rules?

" ahhhh".......deep breath... Sorry for the rant. I absolutely think I am so fortunate to have found this forum. The people here seem so cool and smart. I can't believe how much better I feel, to have somewhere to vent. So many of us with CP, suffer in silence because it is hard for others to understand. It is hard for people to understand that our lives revolve around pain. Thank you so much for the encouragement.

P.S. if you want to call me Pandy, it's fine with me. Everyone who knows me calls me Pandora or Calamity Jane. Trouble definitely follows me everywhere...lol
Posted 8/8/2013 1:39 AM (GMT 0)
Ha, ha, I love both names, love the Calamity Jane too, lol. So glad to hear fight on your post, I am sure it was devastating when you first found out. Let the lawyers do your worrying for you, that is what they will get paid for. One of my favorite sayings is they can't eat me. Even my kids will say this when they get aggravated about something. Come here & vent any time, better tol et it out than build up....Susie
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